osteosarcoma osteosarcoma osteosarcomaAdd to Technorati Favorites

            

I have been having periodic difficulties updating this site. If you do not see a recent update please check greendrakkoman.wordpress.com

On November 7th there will be a Community Work Day at Double H Ranch in Lake Luzerne. We would like to put together a work party to help out. If you are available please fill out and fax them the form at the link below and send us an email. Please write "Friend of Ben Stowell" some where on the form before faxing it.  

http://www.doublehranch.org/documents/upload/CommunityWorkDayForm_000.pdf     

Green Drakkoman Store - http://www.cafepress.com/greendrakkoman/ 

             

Ben's Photo Albums - http://picasaweb.google.com/greendrakkoman

Trip to Boston Album - http://picasaweb.google.com/greendrakkoman/Boston#/

  Twitter Account   http://www.twitter.com/greendrakkoman 

10/12/2009


  One of Ben's dreams and goals for the Green Drakkoman has always been to have a video game made and to found a toy company that would use it's profits to fund cancer research and help other kids and families facing life threatening issues. On Friday we met with some folks from Vicarious Visions in Menands for the boys to get a tour of the game developer and get to experience what a game idea pitch meeting is all about. They spent an hour working with Ben and James to get an understanding of the concepts that Ben had in mind. He helped map out a first level. Ben conducted himself like a true businessman. During the past few months he has spent many hours discussing and honing his ideas with me. He communicated them to the team at Vicarious Visions and they put together some good ideas and explained game industry lingo and concepts to him. They treated him like he was an equal instead of a 9 year old boy. It was wonderful to see him acting in such a professional manner and one more reason for us to be proud of him.

  On Saturday he was tired and took a relaxing day. He ate pretty well and had some quiet fun.

  On Sunday he stopped eating and was even more quiet.

   

   Earlier today he started to have difficulty breathing and we knew he was getting really tired when he stopped allowing visitors we knew he really enjoyed talking with. Stacey and I stayed in bed with him as much as possible all day today. We took turns holding his head and stroking his brow or rubbing his back. He would open his eyes and stare lovingly at his Mom. We continued to tell him how much he was loved and how much we knew he loved us. We shared the postings and emails of friends. We promised to take care of James and each other and told him not to worry about us. At 6:20 PM he quietly stopped breathing. Dr Pearce waited a little bit and listened for heart beats or breathing sounds. Ben left us. He reached the end of the journey that he was on. At the time of his last breath Stacey and I were holding him. We are so blessed that his passing was gentle. We called the funeral home that is owned by a good friend of mine from high school. While we waited for them to come Stacey gently washed Ben with the assistance of some close friends and family. We held him and acknowledged the gifts that he has brought to all of us. When Mike arrived from Bowan Parker Brothers with an assistant we wrapped Ben in quilt that had been made for him by a group of Girl Scouts and placed Caymus with him in the bag for him. They left it open so Ben was visible as they carried him downstairs and to the waiting stretcher. Friends, family and neighbors who were present stood outside holding candles as he was taken down the candlelit walk and to the waiting hearse. It was a beautiful impromptu ceremony. Caymus and the quilt are watching over him tonight. Tomorrow we will be making further arrangements. I will update the site with additional information about the plans for Ben's funeral. We never would have been able to get through this without you all standing behind us. There are so many people hurting over this loss and many of them are children. Please hug your kids and tell them that they were amazing friends. There is nothing they could have done to prevent this from happening and by being Ben's friend and treating him the way they did makes them very special. The North Colonie School District is prepared to help their students and please take advantage of that help. We are no longer concerned about Ben. We want to thank you for sharing your children with our family and our concerns now turn to them and to James.

10/5/2009

  On Friday evening Ben and James went to Webelos scout meeting at a friends house. I dropped them off and then left to go out to eat with a group of adult family and friends. Stacey and I had a great time. We knew that the boys were in very good hands and that one of the dads would bring them home. As expected the boys had a great time. They told us about the evening when we arrived home and put them to bed. They had managed to convince their grandmothers to let them stay up until we came home.
    
   Saturday morning we had difficulty waking Ben. He hadn’t produced much urine overnight. Hen we finally got him to wake up he complained of a headache and he whined, “I just want to go to sleep.” over and over again. It was the same all day and he was less and less responsive as the day went on. It was very scary. At one point Stacey, Miss Kathy and California Cousin Betty were sitting on the floor of his room just watching him trying not to cry as DoeDoe and GrammaMac sat downstairs worrying like crazy while acting very brave. I focused on James and reached out to the doctors. He had not eaten since Friday dinner time. We were asked what we should do about the Harvest Festival on Sunday. I replied, “The show goes on.” The doctors suggested that we make a change to the drugs Ben was receiving and increase his fluids dramatically. The doctors also gently reminded me that these changes could help him, but, that what we were seeing could also be the progression of the osteosarcoma. We know too many families who are on the same journey we are on so we know too well what Ben may be facing. We made the adjustments to the treatments and waited and prayed and waited. Saturday night we started to see improvement. He actually ate a little yogurt. During the overnight he started to pee a little more. On Sunday morning he ate some more yogurt and we saw a little more improvement. By the start of the Harvest Festival at 1 pm on Sunday he was back. He was weak and tired, but, he was acting like himself again. Ben is like a rubber ball that bounces back. He is weaker than he was last week at this time, but, he had a great time at the Harvest Festival. He came out and we pushed him around in his wheelchair. He loved seeing everyone and managed to draw some strength from their support. It was an afternoon that I don’t think the folks that were there will forget. I know I will remember it. The weather looked threatening up until a little while before it was to start. By 1 o’clock the sky was a beautiful blue and stayed that way until it was time to chase the folks away just before 4.
           
   There were stations to decorate pumpkins, do science experiments, face painting, spin art, cotton candy, a bouncy bounce and one for people to write wishes to Ben and our family. A company even donated port-o-potties for the event. Many of the kids were wearing their costumes as they ran from place to place and had a great time. We launch a water rocket several times. There was a professional karaoke DJ who played throughout the afternoon. The Siena College water polo team was there to do whatever was asked of them. Mostly they entertained everyone with their singing. One of the boys’ friends had his father bring a pumpkin that required a hand truck to be delivered so he could carve it for Ben. Towards the end of the event the Latham Fire Department showed up with one of their trucks. People were surrounding Ben with love and good wishes. His classmates were very well represented. One of the highlights was that the boys favorite radio personalities, the Morning Rush, from FLY 92.3 showed up to see Ben and wish him well.
At one point the crowd was getting a little overwhelming for Ben so he asked the woman who was his 2nd grade teacher to take him to see her new car. Miss Hock explained to him that her car was up and around the corner so they would be leaving the festival. E looked up her and said, “I know, I really want to see your new car.” She looked at me and I said to her, “If that’s what he wants to do and it’s okay with you go ahead. You love him as much as we do.” I watched as she pushed him up the street and away from the hubbub. She leaned down as she pushed the wheelchair so she could talk with him. I knew he just needed a break and she was the perfect person to be alone with. Ben stayed outside for close to 3 hours on Sunday. On Saturday at one point we didn’t know if he would even be aware of the festival. I told the crowd that we are so blessed to have all of the support that we have received. There are so many amazing people who have carried us and continue to carry us. Every little or big thing you have done keeps us going. On Saturday when I sent out the twitter messages about what was going on with Ben we know the heavens were bombarded with prayers and what a celebration Sunday turned out to be. Thank you all. 
 

10/3/2009

  I have a backlog of stories to put on here and they will show up. Today was going to be my day to catch up. We have all been looking forward to the Harvest Festival tomorrow. Everyone decided to keep this one a little more low key than the Lemonade Stand so there hasn't been much publicity. It is going to be a great time with all kinds of things happening. If you are in the area you should stop by for the festival taking place on the street in front of our house.

                 

  Ben is sleeping. He woke up this morning with a headache and was afraid the cancer had moved to his brain. We explained that we didn't think it had and gave him his meds. He cuddled with his mom for a while and went back to sleep. He has woken up a couple of times and tells us he just wants to sleep. He has had very little urine output since last night. He tells us he is not in pain. We have medication available to us if he is. We are hoping that this is a just a setback, but, we are really in the land of the unknown and are thankful that he is comfortable.

9/18/2009

 I am working on a larger update of the wonderful things that have been going on during the past week. I will hopefully be posting later on tonight. I have been having difficulty updating this site mostly because of technical issues. Here is a smaller update.

    

  Although I have been definitely showing the signs of the stresses of the past 3 years lately everyone else is doing remarkably well. Ben is receiving fluids during the night and sleeps most of the night with an oxygen tube in his nostrils. He usually pulls it out in his sleep at some point during the night. He also receives oxygen during the day as needed. We periodically check his pulse and oxygen levels with a pulse-ox machine. He terrified Gramma Mac the other day when he decided to see how high he could get his pulse to go. He was sitting in the chair and through altering his breathing patterns rapidly, laughing and wigling around in the chair he was able to get his pulse to 144. The machine started alarming and I put my foot down nd told him to "Knock it off." He replied with a chucle. "What, I was just trying to get a little exercise and test the machine?" I told whim that what he was really testing was his granmother. We have noticed that over the past week he has needed to rest more and is sleeping longer. Stairs have become tough for him. He needs to take them slow and sometimes needs his inhaler and oxygen after climbing them. He remains as happy as ever and we continue to stay positive.

   

  Ben will be judging the bandaoke contest this week at Savannah's in Albany. It starts at 8 pm and we are planning on arriving around 7:30. If Ben is up for it he may sing "Gives You Hell" again to start off the show.

   

  I have a requests for help to make of you. We really want to get the Green Drakkoman Foundation up and running. We need to find an attorney and/or accountant that is familiar with setting up 501(c)3 corporations to assist us. If you volunteered in the past please forgive me for not following through with you. We already have a couple projects to start working on. If you can help us please email me at greendrakkoman@hotmail.com

  

9/11/2009

I brought Ben to school today. Yesterday he insisted that he was going to walk to his classroom completely under his own power. I found myself 6 feet behind him pushing his wheelchair. I watched as he walked to the building and through the halls. Kids and adults greeted him with big smiles. I am sure I was beaming with pride. As he walked I could see his stride changing slightly and knew he was tiring. At the halfway point through the building I asked him if he want to ride the rest of the way and he simply said, “No, I am going to do this.” As we passed his 3rd grade classroom his teacher from last year took a moment to step away from her new charges and greet him. The little encouragement she gave him carried him down the hallway to his 4th grade classroom. His classmates are amazing. They greet him with such pleasure, but, it is not over the top. It is hard to describe. He doesn’t want to be special and singled out, but, at the same time he gets strength from his social interactions. These kids surround him with what I have decided to call loving normalcy. James is a different matter and I fear he gets a little lost in his brother’s shadow. There are a few kids who are definitely really there for him and we are very grateful. James rushes to the bus to ride with his friends. We think that choosing his own path to school is a great sign and very healthy for him. The boys absolutely love school and this year should be a good one. Last night I was asking them how everything was going and how they expected the year was going to go. Their friend Danny was over at the house. Danny and Ben are in the same class and they both really like their teacher and said that they thought it was going to be a good year. I turned to James and asked him about his teacher, “So, is Mrs Dorsett working out?” He turned to me and matter of factly replied, “She doesn’t have to.”

People are very concerned about our family as a whole and each of us individually. We are grateful for each and every one of you. It continues to be a long, scary journey that we are on and we know we are not alone. Life itself is often scary and we cannot let fear get in the way of living. After dropping Ben off and seeing James getting off the bus at school I stopped back home before heading to work. I glanced at the Times Union (newspaper) and a headline literally made my knees buckle and heart sink. An 8 year old beautiful, healthy girl passed away the night before her first day of the school year. She had a severe headache and was crying. Her parents called 911. One minute their child was crying and the next she was gone. I cannot fathom the depth of their grief. We do not know what is in store for Benjamin or any of us. There are no promises. Discontinuing Ben’s chemotherapy is not accepting an end to his journey…it is accepting that we no longer have a map and compass to guide us through the woods. We have plenty of food, water and good shelter so we may as well enjoy the journey and the wonderful views. We are not alone and there is always a chance that we may find another map and compass or that a search party will find us. It is most important that we do not panic or let fear paralyze us.

9/10/2009

  I think last night may have been the best night ever. The event at Savannah’s was put together in less than 24 hours. During Ben’s last surgery we had been talking in a group about Ben and I made a comment that he loved the All American Rejects and had heard on FLY 92.3 about an event called Bandaoke at Savannah’s in downtown Albany and wanted to give it a try. I think I even said something about looking into it and never getting around to seeing if kids could go. Our good friend Julie was there and said she knew who the owners were and would reach out to them. The other day she mentioned that one of the owners had called back and thought they could make something happen. On Tuesday around lunchtime she called me and said that she was going to a meeting at 2:30 to discuss it and that Savannah’s, FLY 92.3, and the Ruddy’s (The best House Band Ever) were on board and that she would call with the details. Last night it all came together in a wonderful evening of celebration and tomfoolery.

We arrived a little after 5 PM and the band was getting ready to play for a while to warm up the crowd. Ben and James were both wearing “cool” clothes and the crowd was abuzz and waiting for the boys like they were rock stars. Ben was feeling really good and had more energy than we have seen in him since the surgery. He had spent the previous 4 hours receiving a blood transfusion. I’m not sure whose blood it was, but, it must have been someone very energetic and entertaining. Brian and Crissy from the FLY Morning Rush were the host for the evening and they were wonderful. They are both huge Yankees fans and I don’t think they have ever showered more love and attention on a Red Sox fan before. I heard this morning that they actually had an opportunity to be at the Yankees game last night in NY. Savannah’s hosted the event with open arms. I kind of wish we had arranged for designated drivers, but, it is probably a good thing we didn’t. The crowd was a very eclectic group of folks with great energy. After The Ruddy’s did their opening set they took Ben, James and the boys’ friend Duncan behind the stage to practice the All American Rejects song “Give You Hell” on last time. The Bandaoke set started with Ben and The Boys and the night would end with them almost 2 hours later. Jess Ruddy introduced Ben and The Boys by saying that the reason they picked this song was because it gave them permission to say “Hell” at least 50 times. They were fantastic. We are working on getting a video up on YouTube. The night continued with performances that were all full of joy and spontaneity. It was all about and for Ben. My favorite acts to see were Ms. Hock and Ms. Satterlee showing the adults in the crowd that there was no shame in performing for Ben and the extremely welcoming crowd. A group of the Siena Water Polo team sang a love song to Ben that was great. For me the show stopper was when a group made up of some of the important women in Ben’s life stepped on the stage and sang “I Will Survive” at the top of their lungs with an energy that was so strong it could have powered the lights. I think the group consisted of California Cousin Betty, Aunt Janine, Ms Satterlee, Becky (1 of his nurses), Stacey, Ms Hock, Miss Kathy and Dr Jennifer Pearce. Dr DeCaprio’s daughters sang a beautiful song with Crissy from FLY 92. I could go on and on. Throughout the evening Ben, James and Duncan sat near the stage and Ben munched on assorted menu items that our friend Donny kept getting for him. Ben smile so much all night that he was beaming brighter than the stage lights. James and I sang Michael Jackson’s “Billie Jean.” It was a blast to be on stage with him. Of course I wasn’t listening to me sing. If you missed the night and really want to get a taste of “Ben”daoke you will get a chance next week. Ben will be back at Savannah’s with the FLY 92 crew as a judge for their bandaoke contest next Thursday 9/17. They are planning on doing some fundraising things that night. It will be a later night though. I will put more details on the site as they develop.

Today James took the bus to school. We brought Ben and when we arrived at the school he insisted on walking. He said, “I am not riding in the wheelchair on the first day of school. I AM walking into the building.” He did just that. He made it to the classroom, but, when he arrived there he was tired and very glad to find his desk. Mr Gubitz (sp?) was there to greet him and the other kids as they came in. His classmates were thrilled to see him. Stacey brought the oxygen tank to the nurse’s office in case he needed it. Ben and James are officially 4th Graders. The summer is over. Ben is in school and everything feels a little bit better. He was only there for ½ day because Stacey needed to take him to the hospital for more blood products and blood work. He spent the afternoon getting platelets.

9/8/2009

  Yesterday was a pretty amazing day. I am not sure how many people sacrificed their Labor Day to come to our house and clean, redecorate, pick up, hang shelves, clean carpets, build things and work in the yard. I ended up taking the boys to Firefighter Tony’s house with Mr and Miss Kathy. The chemicals and activity were a little overwhelming for Ben and very overwhelming for me. We had a great time checking out Tony’s new place, eating donuts and chatting with the Crudo’s. After we were there for a while we headed out to Crossgates Mall for some school shopping. James decided he didn’t want to go so we dropped him off with Stacey. It ended up being Miss Kathy, Ben, Miss Kathy’s daughter Steph and her friend. Steph’s friend brought along one of the cutest 2 ½ year olds I have seen in a while. Her daughter is beautiful, funny and at times a handful as only an active wonderful toddler can be. It was really fun to be with them for part of the day. Miss Kathy and I took Ben to pick out a new going to school ball cap. It’s not like we don’t have a ton of baseball caps. Ben wanted a new special one and boy did he get a bright hat. I’ll get a picture on here because I can’t describe it. After that we met up with the others and went for a bite to eat at Johnny Rockets. Ben was actually hungry so we jumped at the chance to feed him. Unfortunately it took forever to get a table and to get our food. I think he lost his appetite a little he ate anyway. After that we all headed to a store to pick up some “cool” clothes. He saw some pants and shirts he thought were neat when we were walking through the mall. After that we were going to head to a shoe store to get new sneakers for him. As we arrived at the store he hit a wall. His coloring got bad and he asked for his inhaler. He usually doesn’t ask. He described the feeling as tightness in the chest and difficult to breathe. He asked me to get him “out of there.” We headed to the car in a quick and prudent manner. As we left the mall he got sick a little. When we arrived at the car we put him back on oxygen and he laid down. By the time we were home his coloring was good and the episode had passed. Luckily everyone had pretty much finished up so he could relax on the couch. 30 minutes after we were home it was as if he had never had difficulties. I think Kathy was a little upset, but, she held it together with the skill of a professional. Ben was a little disappointed that he didn’t get a chance to pick out his new sneakers. Steph had asked what color he wanted and what size he needed. He didn’t know I, but, she went looking through the shoe stores at the mall looking for sneakers with yellow on them. She found a beautiful pair of white and black Nike running shoes with bright yellow accents. They were absolutely perfect and when she showed up at the house with them his smile was amazing. She found the perfect pair. When I talked with her mom later she told me that Steph said, “Mom, when I was a little kid the most important thing to me about going back to school was my sneakers. How could I not? I knew how disappointed he was.” Thank you Steph and thank you every one. You continue to make our family feel like the Bailey’s.

 

9/4/2009

   We started this web site almost 3 years ago. My intention has always been to share our experiences in an open and honest way. Tonight as I write this I am focusing on the positive. I have tried to come up with a way to tell you all about the happenings this past week without scaring and upsetting you as you read it. I will start by saying that Ben is doing well. He is resting and saving up his strength. He has plans to go to school when it starts on Septemeber 10th. He has plans to go snowboarding at Double H Ranch this winter. He has plans to have fun with his friends and family. Our goal is to help Ben accomplish as many of these things as possible.

          

  Ben was admitted to the hospital earlier this week because of the fluid that was in the area around his lungs. As the fluid was treated as an infection it seemed to clear up some and his breathing improved. In an effort to hasten the healing it was decided to use a radio-intervention technique that involved using ultrasound to identify the pockets of fluid and then use tools to drain the pockets. When the technician did the ultrasound on Wednesday it didn't look the way she expected it to look. She reached out to the doctor who was going to do the procedure. He also was confused by what he was seeing and since he was a "fellow" he brought in the Cheif doctor in that department. He also didn't like what he was seeing. He reached out to Dr Pearce to see what she wanted to do. He recommended a CT scan to get a better idea of what they were looking at. The whole time Stacey and I were involved in the discussion as we were with Ben in the procedure room. Dr Havier Sanchez was also with us. He is the head of PICU and he was there to help us. He made sure that we understood everything and was technically the doctor who ordered the procedure. He has turned up in several scenarios throughout these 3 years and in each one he was on Ben's side and looking out for Ben's best interests. He did the same in that room. It could have been terrifying for us, but, he helped us hold it together and protected Ben by guiding the conversation. The doctors were all great and asked Ben if he had any questions. The CT scan was ordered and Ben was moved to the CT suite for imaging. While we were waiting Dr Sanchez and one of the assistants were in the room with us. Ben started singing, "20, 20, 24 hours to go-o-o-o. I want to be sedated." I thought they were going to explode with laughter.  commented they must have heard others under sedation sing the song. The assistant replied, "Never from a 9 year old." After the CT scan it was decided that the fluid was loculated. Loculated means that it is in many small pockets. After discussing it with Dr Pearce and the surgeons Dr Whyte and Dr Georges it wasdecided that they would go in yesterday and remove the liquid using as small an incision or incisions as possible - kind of a mini-thorocotomy. It took a while and then they came out to talk with us. It seems they didn't find very much fluid.  When they opened Ben's right lung cavity  they found that his rght lungs were mostly filled with tumors. The tumors where not distinct on the images because of scar tissue. There are too many to remove and they are making it nearly impossible for Ben to use his right lungs. Ben is breathing well, but, only with his left lungs. 

          

  It is apparent that a chemotherapy which initially showed promise has once again not been able to control the evil alien within Ben's lungs. After consulting multiple doctors who we trust implicitly we have decided to discontinue the chemotherapy. It is not benefiting Ben and the side effects negatively impact his ability to live life to the fullest possible measure. We are continuing to give him medicines which lessen the impact of the osteosarcoma symptoms and control pain. As he recovers from the incision pain he will become more active. We are also keeping him on oxygen as needed and giving him fluids at night to keep him hydrated. We are also planning to have as much fun as possible with him and help him to acheive his plans and goals for the near future. As James said when this whole mess started, "Ben is still Ben and he always will be."

     

  We have no idea what is around the bend of this road we are on. We do know that we are not alone. We do know that although at times the landscape seems barren there are many waypoints along the way. We do know that when we fall there will be someone to help pick us up. I did not think that the words I put on here the other day would come back at me. I find my self focusing on this quote from my last post - The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they both may lead to the same destination. The road we are on continues to be paved with hope. I and many others are looking for a map, compass or star that will point the way. There could still be one around the next corner or hidden in a nearby bush. We love all of you and ask that you continue to remember that "Ben is still Ben."

     

  I also wanted to mention Mocha. As you know Ben has wanted Mocha to become a therapy dog. Ben and I have worked with her and she passed the therapy dog test a couple of weeks ago. I went to the Volunteer Department at Albany Med this week to take the necessary steps to have Mocha be able to work with Ben and I there as a therapy dog. The woman in charge took my paperwork and thanked me saying, "Great, we will review everything and invite you for an interview. We have a number of dogs ahead of you and ther person who conducts the interview is on vacation. It may take up to 6 weeks before the interview. I was crushed. Tears welled up in my eyes and my kneees wobbled a little. I told her of Ben's wish to see Mocha help others. She said she would see what she could do and because Mocha is a registered therapy dog made arrangements with the child life specialists and security for me to be able to bring Mocha into the hospital to be with Ben if he is inpatient. I thanked her. A little while later she caught me by an elevator and said, "Oh good, I found you. Here you need to come with me. I made a few calls and someone must be helping out somewhere. Everyone I called wants to help." She walked me through things and in 2 hours I had filled out tons of paperwork, given blood to be tested and recieved a flu shot. These amazing people at the hospital have made it possible so that on Tuesday when Ben goes to clinic he will get to see his dog Mocha do her first rounds at Albany Med as a therapy dog. Everything was done legitimately, just quickly.

                

9/1/2009

 

  Ben has been keeping a relatively low profile these days. Interferon is a really tough chemo and that coupled with this cold virus he is fighting are knocking him for a loop. All of the health care professionals we have talked with assure us that the breathing issues are related to the virus not his osteosarcoma. I asked him last night to describe how he was feeling and the best word we came up with was “Blllllllllllllllleeuuuuuuuuuuukkkkkkkk!!” I think I spelled it correctly. We have been feeding him mild chicken wings from Paesan’s in Latham every night this week. Last night was the first time he decided he wasn’t hungry after I brought them home. One of the things I have discovered is that if he is hungry for something there is a very short window to provide it or he loses his appetite by the time you get it to him. Climbing up or down stairs or walking very far winds him easily and tires him out. He is also a little cranky at times. Ben cranky can be very funny. He is the most polite cranky person I have ever seen.

      
  Today when Ben went in for Chemo they did an x-ray to see what is going on with his lungs and breathing. It seems that there is fluid building up around his lungs. The fluid isn’t in his lungs so it isn’t pneumonia. The fluid around his lungs is what is making it hard to breath for him. Ben has been admitted to the hospital and is already in a room – 726. It’s a private room and one of our favorites. Doesn’t that stink; being able to actually have a favorite hospital room. Dr Georges will be coming in to see Ben and do an evaluation. Ben will most likely be having surgery to put in a chest tube to drain the fluid. They will most likely culture the fluid to try to find out more about it. Ben knows that we have to do something to get the fluid out. We don’t know the timing of the surgery, but, I will use twitter to post it here on the web site. Ben is scared. We are focusing on the positive and looking to keep him motivated. We are very happy that California Cousin Betty asked to take James with her to Glens Falls this week. We spoke to James last night and he is doing well and having a good time. Although, the baby that is there is crying a great deal and he has had enough of that.

         
   As most of you know we follow an email list on ACOR.org for patients, caregivers, medical professionals and anyone with an interest in osteosarcoma treatments and car. We are in touch with folks all over the world. It is a great sounding board for things. Lately it seems that a number of folks on the list have been having a tough time. One of the Moms posted a story of being told to give up hope that almost broke my heart. She and her child are real fighters and she turned to the list for reinforcements. Here is the email I sent to the list in support of them:

          
I cannot reach across the distant miles and hug any of you with my arms. I
remember when we found this list almost 3 years ago I only expected to lurk
for a few months or maybe a year. I fear for the people coming onto this
list that they may not be able to see the light through their fear. 3 years
ago there was very little new being done to combat osteosarcoma. Thanks to
some of the folks on this list and many others today there is a great deal being
done to combat osteosarcoma. It may seem that many of us are struggling
right now to find something that works. The positive thing to focus on is
that we are doing just that. We are able to find options. We are able to
keep moving. We are able to share another year, month, day or even hour with
our loved ones. We are able to smile, laugh and even cry. We are able to be
there for someone else and we are able to allow someone else to be there for
us. Stay strong, be positive and no matter what there is always hope; if not
for ourselves for someone else.
         
When I was a young man I was asked to give the sermon during a Youth Sunday.
At the very beginning of the service I had pencils and paper handed out to
the congregation. Once everyone had their paper ready I asked them to quiet
their hearts and mind and just listen to my voice. I explained that I was
going to say a single word and that I wanted them to write down the first
thought that they had regarding the word. If it was a quote or bible passage
that included the word that would be fine. If it was a definition or
impression of the word that would be fine. There were no wrong answers. What
was important is that they write something. I then said a brief prayer
thanking god for everyone's presence and wisdom. After ending the prayer I
said the word "Hope." After a little while we collected the papers. The
sermon consisted entirely of me reading what the congregation had written.
It was incredibly moving. Since that time I have actually done the exercise
on my own using different words and the internet, the bible (with a
concordance), the library card catalog and books of quotes and wisdom I have
acquired. Here are some of my favorite sayings about hope for today. I have
added the sources where I know them and they may not be 100% accurate.
            
- Where there is breath there is hope. ~ Me - I think
- Hope is the name of the knot I tie when I am at the end of my rope. ~ Me too
- The Grand essentials of happiness are: something to do, something to love,
and something to hope for. ~ Allan Chalmers
- Hope is both the earliest and the most indispensable virtue inherent in the
state of being alive. If life is to be sustained hope must remain, even
where confidence is wounded, trust impaired. ~ Erik Erikson
- Hope is like a road in the country; there was never a road, but when many
people walk on it, the road comes into existence. ~Lin Yutang
- The road that is built in hope is more pleasant to the traveler than the
road built in despair, even though they both may lead to the same
destination. ~ Marion Bradley
- I still believe in Hope - mostly because there's no such place as Fingers
Crossed, Arkansas. ~ Molly Ivers
- When you say a situation or a person is hopeless, you're slamming the door
in the face of God. ~Charles L. Allen
- Hope never abandons you, you abandon it. ~George Weinberg
- Some see a hopeless end, while others see an endless hope. ~Author Unknown
- Hope is patience with the lamp lit. ~Tertullian
- Hope is the word which God has written on the brow of every man. ~Victor
Hugo
- Hope is the only bee that makes honey without flowers. ~Robert Ingersoll
- Lord save us all from... a hope tree that has lost the faculty of putting
out blossoms. ~Mark Twain
            
Love you guys

8/30/2009

  The other day Ben and James had an opportunity to see something that very few folks get to see. They both love planes and helicopters. We have had some small remote controlled planes that they have played with. We even flew one of the helicopters around the hospital during Ben’ stays when he was getting chemotherapy as an inpatient. The boys were able to go to the NY State Police Aviation facility at Albany Airport. The officers heard about Ben through a friend and invited Miss Kathy to bring the boys to the facility. The State Police have a number of vehicles and the boys had the opportunity to look at most of them and even see the insides of a couple of them. They also had the opportunity to see the inside of a SWAT Team transporter. One of the officers showed them one of their machine guns/rifles. They couldn’t touch it, but, he let them look closely at it. It was an incredible special time that the boys will never, ever forget. They have been talking about it almost non-stop. As they toured the facility one officer gave Ben a Boston Red Sox helicopter right off of his desk. Another handed the boys a football. They also received a State Police Aviation baseball cap right off of one of the officer’s heads. One of the things the boys are most proud of is that they have the business card of a member of the SWAT team, “In case they ever need it.” I don’t like to think why they would need to call him, but, they view it as having their own personal SWAT team member. It may not have been a great deal of time to an adult, but, to two 9 year old boys it was something that they will always remember.

Last night, for the first time in a while, Ben seemed to sleep a little better. California Cousin Betty was with us for the night. The two of them slept in Gramma Mac’s room and CCB thought he slept well. Ben has been fighting a virus that is putting additional stresses on his lungs. He has a runny nose that is putting gunk into his lungs. At night he is coughing quite a bit so I don’t think he is sleeping too well. He doesn’t complain about it. We have been giving him Sudafed to help with the runny nose and it seems to be working. He is supposed to get chemotherapy tomorrow and we are hoping that his counts are good enough for him to get it. He gets quite the cocktail He will be getting the interferon and etoposide along with the zolydronic acid. He will be there most of the day.

On Friday we stayed the night with our friends David and Pamela who live in Bolton. There house is beautiful and has a great view of Lake George overlooking the Sagamore and many islands. They are wonderful hosts and do everything they can to not only make us feel at home, but, the boys too. When we were leaving the house on Saturday James said, “I think they would let us live with them.” We chuckled a bit and then he added, “The only problem is there may not be enough space for our toys.” When we left we went with David and Pamela to the Ben & Jerry’s in Bolton. You see, they own the store. They let the boys scoop their own ice cream. As all of us sat down to eat our ice cream James turned to David and said, “Ben & Jerry’s ice cream is great, but, it’s even better when it is free.” David pointed out, “It usually is free for you. Your parents pay for it.” We had a great time although the weather didn’t cooperate so weren’t able to go out on Lake George in their boat. Depending on Ben’s chemo we are planning on heading up later this week. At least Stacey and the boys are planning on it. My attendance will depend on work.

8/25/2009

  Tuesday night was a pretty cool night. We brought Mocha to her first therapy dog working session with children. Previously she had been working at a nursing home in Troy. She is really good with the older folks, but, she was amazing with the kids. They couldn’t keep their hands off of her and she just relaxed and let them. It has been really been an eye opening experience. Even though I am her handler I was very skeptical of the whole therapy dog thing. I had watched Ben’s reaction when the dogs came around at the hospital. Most of the time he barely talked to the dogs that were brought in and would rarely pet them. He always smiled and he always welcomed them into his room. I talked to him a little about it and he said that when they came in sometimes it made him miss Mocha, but, it always made him feel a little better. I have watched as one older woman who could barely remember her name spent 10 minutes petting Mocha and talking about the dogs that she had throughout her life. I listened to gentleman laying in bed unable to sit up tell me about the chocolate lab he had after he came back from a war (I’m not sure what one) as he rested his hand on Mocha’s head and she let him. There was one nicely dressed lady who was strapped into a wheel chair in the hallway and she was speaking incoherently. Mocha pulled me over to here and sat down on her own next to the wheelchair. We asked if she liked dogs and she looked at Mocha like a little girl discovering a pony. She reached forward and cupped Mochas face in her hands and said, “Mocha, that’s such a pretty name.” Mocha’s tail moved a mile a minute and the two of them looked at each other for a little while. She stroked Mocha’s head and said a few sentences about how nice, beautiful and good Mocha was. She looked up at me and thanked me for bringing Mocha to her. As we walked away I heard her go back to mumbling. Mocha had done everything, even selected the woman to sit next too. I had not given a single command. I stood there and held the leash. The woman who was training Mocha and I turned to me and said, “See, the dogs get it. Mocha just gave that woman everything she needed. Mocha is already a great therapy dog. You can’t train the love that was just in that interaction.” I am now a believer and very grateful that Ben believed that Mocha would be great. I was also surprised at just how much the dogs at the hospital really benefitted him.

Master Keoshi (Russ) brought several of his students to Noogieland to do a karate demonstration and then a lesson for the kids. It was really nice and Ben was thrilled that he was coming. Ben has worked very hard with Master Keoshi at the hospital. Ben was singled out a few tmes to demonstrate different moves. One of the black belt students was holding the bag when it was Ben’s turn to kick. He surprised her and did 2 really hard great kicks that moved her backwards. Master Keoshi was watching a said, “You didn’t think he could kick that hard. Trust me; you have to be ready for him.” Ben did great. He takes karate very seriously and works hard during the lessons. He has asked us to get him a heavy bag to practice on. I think this is the week to make that happen. At the end of the lesson Master Keoshi surprised everyone. He brought Ben up and told of the hard work Ben has done over the past 2 years. Ben pointed out that it was really 2 ½ year…”Almost 3.” He spoke of meeting him and calling him his best student at the hospital. Ben was a little embarrassed, but, he enjoyed the notoriety. Master Keoshi then had Ben turn to him and with the two of them facing each other. He told Ben that during his last lesson at the hospital Master Keoshi was actually testing him. Upon review he was presenting Ben with his next belt. He removed Ben’s blue belt and put the new blue belt with black stripe on Ben. Ben stood proudly erect throughout the surprise ceremony and then they bowed to each other. The black belt student congratulated Ben. Afterwards I went up to Master Keoshi and choked up as I thanked him. He gave me a very strong handshake and with a look of strength and love in his eyes said, “He earned it.”

8/24/2009

 Ben's platelet count was too low on Monday for him to receive his chemotherapy this week. He will be waiting until next Monday to start his 5 day cycle. Just before he left for Camp Adventure I noticed he had a spot on his right wrist that was a little tender. I didn't feel a bump and it wasn't really painful for him. After we wpicked him up from the Camp Adventure trip I touched the spot and he really flinched. It is quite painful for him. On Monday we had it x-rayed and the images didn't show anything that required intervention. The films are being reviewed further. Today the spot is stillpainful. On Thirsday he will be going back to the hospital to have his blood counts done. We may ask for additional images if it isn't getting any better. He has been coughing a great deal this week and it is concerning him. He asked his Mom why he keeps coughing. His nose is running and the coughing goes away when we give him Sudafed. That is what we are doing. When we were at the hospital he talked a little about the pain in his wrist. He was concerned that the osteosarcoma had moved to his wrist and is what is causing him to cough. He doesn't talk about his fears very often. I told him today that I was very proud of him. He asked why and I told him, "You are brave, courageous, smart, funny and caring. You have a great memory and never forget a bribe, which, I might add are usually very creative. Did I mention good looking and talented, just, like your Dad?" After the chemotherapy next week we will be getting images, scans, blood tests and as much information as possible to see how he is doing with this latest treatment. e are planning on going to MD Anderson Cancer Center in Houston, Tx to see some of the leading osteosarcoma experts in person for another opinion on what we should be doing. Dr Pearce agrees that this is a good thing to be doing. She pointed out that our insurance will most likely not cover this visit at this point in Ben's treatment. Everytime Ben coughs a part of me screams. I know that if I am worrying what is he thinking. He trys to protect Stacey and I from things that make us cry. We hear so many stories from parents about their children protecting them and now we are really seeing it from Ben. I think we are all looking forward to school starting. Ben draws an incredible amount of strength from the Blue Creek School and community. We were supposed to go to the Red Sox game on Monday and instead decided that we needed to take it easy and not push ourselves. The boys had a great time at Noogieland tonight. The folks at Gilda's Club allowed us to bring Mocha in to be with the kids. She did an amazing job. She really is going to be a great therapy dog. She allowed the kids to pet her and just oozed love towards them. One very little girl just sat next to her and gently played with her ears. At one point the girl wanted to see how soft the hair on the inside of Macha's ears was and leaned really close and gently brushed Mocha's ear agains her cheek. Mocha just lay very still and let this little girl check her out. I am very glad that Ben insisted that Mocha become a therapy dog and I am very happy that the boys are so proud of her.

We are stayiong strong and staying positive. he summer is almost over and school wil be starting on September 10th. Another summer of fun and memories is coming to a close.

8/20/2009

  We are heading to Hofstra tomorrow to pick up the boys. We have called twice since Ben returned to camp to see how everything was going. The boys have been having a fantastic time. Obviously they have made themselves known to the camp staff and administration. We have not actually talked to the boys. The kitchen staff has been going above and beyond to keep en eating. They have been making all of his favorites to keep eating whether or not it was actually on the menu. The boys are definitely looking out for each other. e heard that James went up to the kitchen staff and asked for another grilled cheese sandwich for Ben. A member of the staff pointed out that Ben had just received one and was in fact eating it at that moment. James replied to her, "I know, but, he should really eat another one to keep up his strength." She laughed and made another one. Ben has not used his wheelchair since returning to Camo Adventure from the hospital. They have also asked him if he wanted to ride on the golf carts between events and he hasn't really taken them up on the offer very often. The boys have been touching base with each other as they move between parts of the camp. Sometimes they are together for things and other times they go their seperate ways. Benn has also been making sure that James is comfortable at night. Last night they had the camp prom. The camp arranged for ball gowns for the girls and tuxedoes for the boys. They also had 8 limos that picked up the kids and drove them around the camp before depositing them at the hall where the dance was taking place. The woman that Stacey spoke with said the boys were adorable. After the prom the kids were given treats, trinkets and stuff. James was having a difficult time carrying it all and holding up his pants at the same time. His tuxedo pants were a little large for him. He asked the woman walking with him to either help him carry the stuff or hold his pants up. She volunteered to carry his treasures. We can't wait to see the pictures and hear the stories.

8/16/2009

  On Friday night we all went to a gala fundraiser for the Double H Ranch that was held at The Great Escape in Lake George. As part of the fundraiser Ben and I spoke to the attendees. We started with me interviewing Ben and asking questions about Double H Ranch. After that he left the stage and I stepped up to the podium. I explained to the attendees how important Double H has been to all of us. During the speech I told everyone that when everything started Stacey and I promised Ben he would never be alone in the hospital. One of us would always be there or at least a relative or close friend and then it would only be for short time. I said, "and we have managed to keep that promise." Yesterday we brought Ben and James to Hofstra niversity on Long Island to meet the busses to take them to the American Cancer Society's Camp Adventure on Shelter Island. They were very excited and couldn't wait for the bus to take off. We were a little nervous about sending them off on their own. They were very cute. Ben told us that if James was scared and needed cuddling he would cuddle with him. James told me he would keep an eye on Ben for us. Around 1 pm I received a call on my cell phone from the lead Doctor at the Camp. They had been trying to reach us and where very relieved to have me answer the phone. Last night our power went off here and apparently our telephone wasn't working. Stacey's cell phone had dead battery. The doctor explained to me that Ben had a niose bleed and it wasn't stopping. It had been bleeding for almost 2 hours. They had called Ben docotrs here and they told them to bring Ben to hospital and get CBC (blood count) performed if it continued to bleed for more than an hour. They were on the way to the hospital. They had to take a ferry from Shelter Island to a hospital on Long Island. He was travelling with a nurse from the camp and the camp director. We talked to Ben a couple of times and the women with him. We know he is in good hands, but, today our promise was broken. It turns out that Ben's platelet count is up to 20 from 8 on Friday. His white blood count is low, but, he hasn't had a fever. They are heading back to the camp now. When we told Joe, our neighbor, about Ben he asked how we were able to stay so calm. He said, "You guys are rocks." I replied, "We may look like we are on the outside, but, inside we were both wrecks." Even though I have talked to Ben twice and he sounds fine I can't help feeling I have let him down. When he talked to Stacey a couple of minutes ago he asked her to send Caymus to him. He had decided he didn't want to take Caymus to camp because he was afraid something would happen to him. Not only did my little boy spend the day in hospital without his parents he didn't have his favorite stuffed animal that has been by his side throughout the treatments. We are going to see about getting it to him. All is well and we know they are having fun. Boy do we miss them.

8/12/2009

Today we were expecting Ben to get transfusions of red blood and platelets. Stacey packed him up and headed to the hospital. I called around 11 to see how it was going. She told me they were home and that his counts had rebounded since Monday. They are still low, but, close to what is considered normal. He is taking it a little easy. He is eating a little better. We are half force feeding him and half giving him whatever he wants. The other day I was at the market and reading the packages of the food I was buying to see which items had the MOST calories. As I was doing that in front of a frozen food freezer looking at the calories on ice cream sandwiches I noticed a woman about 20’ away doing the same thing. I couldn’t help smiling and wondering how many people were looking for high calorie items. I ended up buying both packages of ice cream sandwiches. The 1 with 250 calories per ice cream sandwich was for Ben. The 1 with 150 calories per ice cream sandwich was for the rest of the household.

When everyone, except me, was at Giants training camp something really cool happened. After Eli Manning came over a woman standing outside the fence called Patricia Olsen over and asked if that was Ben Stowell in the wheelchair. Patricia replied that it was and the woman introduced herself to Stacey and the boys. It turned out to be Lin Burgess. As you know there are many people on the same path that we are. Lin’s 17 year old son had osteosarcoma in his femur. It was removed and he was declared NED. Like Ben, he had several months of feeling the monster had been vanquished. Unfortunately, like Ben the osteosarcoma has metastasized to his lungs. We have been following Nathan’s journey for some time now and it was really nice to get to meet her in person. She had come all the way from Seattle and was in town visiting her family. She grew up around here. She and Nathan have an apartment in Seattle near the children’s hospital where he is getting his treatments. The 2 of them moved there from Alaska; leaving Dad back at the house to work, take care of the dog and commute to Seattle every time he is able to. Her father is a huge Giants fan and wanted to go to the training camp. They had decided to go to the camp and then she received a tweet on her cell phone. It was my twitter message saying that Ben and the rest were heading to the Giants training camp. She knew then that there was no way they weren’t going to see the Giants…and Ben. Stacey and Lin decided that we would get together before she headed back to be with Nathan in Seattle today.

Last night we made arrangements for the boys to get to and from Noogieland without us. We invited Lin and her family here in Albany out to dinner at one of our favorite restaurants – Creo. Stacey an I pulled into the parking lot at Stuyvesant Plaza right at 6:30. We were exactly on time. As I pulled up to the doors at Creo to let Stacey out before parking the car we saw a familiar face coming out of the restaurant . It was my sister Janine. On a whim she and a friend had decided to go to Creo for the evening. To make things even cooler she had been inside the vestibule talking to 2 women who were waiting for the rest of their party to arrive. As you have probably already guessed it was us they were waiting for. Lin and her sister had been talking with her. It was really cool. We invited Janine and her friend to eat with us, but, she refused. Lin’s father and mother showed up a little after we sat down. It was an amazing dinner. The food was fantastic. We talked about so many things. We talked about treatments. We talked about hope. We laughed. We had teary eyes a couple times. We laughed. Our bond was instant and we laughed at things that anyone over hearing us would think we were nuts. Stacey and I were so thrilled to get to meet someone we only knew from the ACOR osteosarcoma list serv and checking out each of our children’s web sites. We pray for Nathan and family everyday and I know that Lin and her family are doing the same for ours. I don’t think any of us wanted to say good-bye. There was a great deal of hugging. During the night Lin and I had talked about updating our child’s web sites. I had commented about how I had to stop writing for a bit. She told me that she understood. When we were leaving Lin gave me a great hug and as our embrace ended she looked at me and said, “You have to keep writing. You make it real.”

As we were driving home I had the top down and noticed it was 9:48. The night air was beautiful and the wind felt good blowing through our hair. We could even see stars in the sky. Stacey looked at me and said, “Isn’t it wonderful having a convertible on a night like tonight.” I agreed. The radio was off and I didn’t feel the need to turn it on. We talked for a bit. All of a sudden I realized that I was doing all of the talking. I looked over and Stacey was quietly crying. I reached over and put my hand on her leg. She knew I understood her tears. Her tears are not easily explained. They are tears that contain great joy and great sadness at the same time. There is no other way I can think to describe them.

8/10/2009

Be prepared for a long post today. A great deal has been going on this week. Ben started the Interferon/Etoposide therapy on Monday. He has tolerated it amazingly well. The doctors and nurses can’t believe he has handled it without any major side effects. We have talked to a couple people and read about it on the internet and the side effects can be very scary. Your prayers and kind thoughts continue to give him strength.

Mocha passed her therapy dog test on Wednesday. The person who conducted the test and evaluated Mocha has submitted the paperwork and we should be getting the IDs and other certification documents soon. It takes a little time to work through the official channels of the organization – Share-a-Pet. After we have everything from them we have to get paperwork completed through the Volunteer Office at Albany Medical so she can go into the hospital to visit patients. Ben is really looking forward to it. He can’t be her handler because he isn’t 18, but, he can go along with her. We can also bring her to school and to Noogieland. She really is good at it. The testing was done at a nursing home and she did everything well. I think I need more training then she does. We will still be receiving training to improve our skills. The subtleties of the work is very interesting. Teaching her to hold her head in just the right place so the patient can reach her, being able to back up out of a tight space and to not lick are the things we are working on. She does the first 2 very well. The hardest thing we have to teach her is not to lick.

Last night Ben was alone with his Mom in the boys’ bedroom. They were moving things around in the room and talking about some of the cool things and experiences that we have had over the last 3 years or so. The boys have always wanted bunk beds and we kept telling them they were too young. 9 years old is a fine age to get bunk beds. There was little discussion about who would be on the top bunk. They figured that out a long time ago. Ben is in the top bunk. The beds are up and everyone has been happy with them. So the boys are redecorating their room. The change is good and that is how Ben and Stacey ended up alone in the room moving his trinkets to his new set of shelves. James had already moved most of his things to his set of shelves. As they were doing it they reminisced. They ended up sitting together on the floor just talking. Ben said, “I’ve had cancer a really long time, haven’t I?” She replied, “Yes you have. You were 6 when we found it.” “So, I’ve had cancer for 3 years.” There was a pause and he added, “That’s a really long time when you are 9.””Yes it is Ben, but, we are doing everything we can to get it out of you.””I know. I am really getting tired of all of this. I really want it out of me. I want it to be over.” “We all do.””Mommy, why are you crying? Please don’t cry.””Oh Ben, I am just crying because of all of the memories that we have talked about. They mean a great deal to me and I am very sentimental. You know I cry at commercials.””I know, I just wanted to make sure they weren’t sad tears because of me.”She somehow choked back the tears and said, “No honey they are good tears. Because I am happy about everything, all of the memories we have been talking about.” It was at that point that I entered the room and everything stopped. It was very obvious that Stacey had been crying. I asked why Mommy was crying and Ben said, “Don’t tell Daddy what we were talking about.””She looked up at me and said, “Everything is okay. We were just talking about the things we have done together. You know me, sentimental, softy”. At that moment I knew that been was protecting me once again. He doesn’t like us to worry about him.

     
Today we all woke up early and then went back to sleep. We woke up again and quickly dressed. The boys were wearing their blue Eli Manning football jerseys. I had also picked up white ones and half sized, autograph footballs for the boys to get Eli’s autograph and maybe some of the other players. We were getting the chance to be in the bleachers 20 feet from the practice field with no fences between us and the players. I had to go to work so after we wheeled Ben to the bleachers I stayed a little while and then left. The air was very thick with moisture and a few clouds dropped rain here and there. At one point James asked with exasperation, “How long does this practice go on?” It was very warm and then the sun came out for a period of time before the rain sprinkled some more. Sitting in wheel chair Ben was visibly wilting. Patricia Olsen, the person who helped make the visit happen, went over to a lady who had an umbrella. Of course we hadn’t brought one. She asked the woman if she could borrow her umbrella for Ben. The woman told her that she was a cancer survivor and would be happy to let Ben use it. Patricia asked her if there was anything she wanted to get signed by Eli Manning. She gave Patricia a hat to have him sign. The Olsen’s have been an amazing part of our support. The entire family has reached out to us and their son Ben has become a great friend of the boys. As soon as practice ended a very tall, good looking man in a gray Giants t-shirt came walking towards Ben. It was only when one of the people with them said, “It’s Eli.” to her. At that point many people starting imploring Eli to come to them. Eli was totally focused on Ben. As he approached the wheelchair he reach out his hand and asked, “Are you Ben? I’ve been looking forward to meeting you.” Ben was stupefied. He couldn’t get a word out. Eli also turned to James and said, “You must be James.” The 3 of them talked for a while and posed for pictures. He asked the boys who were their favorite players. James replied, “You.” Ben said, “Well I do like the Giants and the Colts. The Giants and you are my favorite, but, my second favorite would have to be the Colts and Peyton Manning.” He said it with emphasis on Peyton. Eli looked at him and said, “I guess that’s okay – keep it all in the Manning family.” He talked with everyone and signed everything we and the Olsen’s had brought with us. He then turned and walked across the field to go back inside. He was truly there for Ben and James. I guess I am now a Giants fan and an Eli Manning fan too. At the same time I find myself looking at the fences holding people back and thinking about what it would be like to be on the other side of the fence – taking 2 very disappointed little boys home.

http://www.facebook.com/album.php?aid=96315&id=590332309&l=b9552e63e1

Ben is exhausted and is sleeping soundly after getting a platelet transfusion today. He will be having transfusions of blood and platelets on Wednesday and Friday. We will also be giving him a neulasta shot that should stimulate his blood production. He is losing weight. He is down to 82 pounds. We are trying to get him to eat anything. We are also putting butter on anything we can. Stacey stopped on the way home from the hospital to get him wings. He ate a few and then went to sleep.

8/5/2009

 We had a great time last night at the Valley Cats game at The Joe in East Greenbush. Ben was a real trooper and some nice parking attendants allowed us to park in the season ticket holders lot. It was close to the ballpark. We had a feast of hot dogs, hamburgers, soda and water. Ben really didn't eat anything. His appetite is practically non-existent. We are putting him on an appetite enhancer called Marinol. His energy level was not real great at the beginning of the game and continued to drop. James checked on him several times. He would lean forward and look over at Ben. I was sitting in the midle of them. I had my arm around Ben and he was resting his head on my arm and shoulder. Ben kept insisting that he wanted to stay. James whispered to me,' It's okay, we can leave." I told him that Ben wanted to stay at least until the 5th inning. James then said, "It's okay to blame it on me let's go." He then leaned forward and said to Ben, "Ben, come on, let's go home. I'm bored. You are too." We ended up leaving during the 4th inning. Ben is a real trooper and I could see the relief on his face when James and I insisted that we leave. Although he wouldn't admit that he was happy to be going home.

     

  He had his chemotherapy today and is tolerating it well. He hasn't had any more fevers. His energy level is really low though and he isn't eating well. I find myself listening to his breathing and wondering if he is breathing more shallow or rapidly than he was before. We are beating the bushes trying to get access to one of 2 promising treatments for him. The main one we would like to get for him is called Rexin-G. I sent an email to the ACOR.org osteosarcoma email list and within a few minutes I started to get emails from folks on it offering what ever information they had on it and who to contact to help us.  

         

   I am taking Mocha tonight to be tested to become a therapy dog. If she passes the test tonight she will be a certified therapy dog. Once she is certified we can register with Albany Medical Center and get her into a visitation program there. If Ben is inpatient again Mocha will be able to visit him. Ben really likes the idea of Mocha being able to see him and also to share Mocha with the other patients. He wants to walk through the halls with Mocha by his side. She sleeps at the foot of the ladder to his bunk most nights. I think she is really disappointed that she can't get into his bed any more.

    

 

8/3/2009

Today was the first day of Ben’s new chemotherapy treatment plan. We have changed it because the results of last week’s CT scans were less than positive. The 3 tumors we knew about soon after Ben’s last surgery had indeed grown slightly even with the chemotherapy he was receiving. In addition to the growth there are additional tumors on both sides. So we decided to scrap the Nexavar and have moved on to Interferon with Etoposide. On the ride to the hospital I talked with him about the new treatment. I explained that I had exchanged emails with the mom of a young man who is also fighting osteosarcoma. I said, “His mom said in the email that the Interferon had worked for her son. He didn’t receive the etoposide so you are getting more than he did.” Ben replied, “That’s good to know. That’s really good to know.” She told me that he had been on it for 9 months and it held the tumors at bay during that time.

When we arrived at the hospital Ben had his counts done and then it was time to give him the Interferon. It is given through a subcutaneous shot. Ben hates shots/needles. Even little ones like this one. It uses a very fine needle and is given into the triceps muscle. He would have none of it and as you can imagine Dad caved and offered a bribe. I ordered him a set of 6 glow-in-the-dark Uglydoll Ice-bat action figures for him. They aren’t even out yet – it was a preorder. The shot is painful when it is injected. The nurse who gave it to him massaged his arm until it stopped hurting.

Around 10:30 Master Yoshi was in the playroom at the clinic for the “Brave Belts” program. He teaches karate every Monday to the kids that wish to learn some moves. He calls Ben his prize student. I was amazed as he put Ben through his paces. Ben remembered the moves and exercises like he had been practicing them every day. He went through all of the moves from the most basic up to a series of moves that are necessary to master to attain a blue belt. He executed them beautifully. The whole time he was doing these movements he was attached to an IV pole that was delivering fluids and the etoposide. As he moved across the floor, Toshiko, the clinic’s child life specialist maneuvered the pole alongside him. She watched every move and as he took steps across the floor throwing punches and blocks she wheeled the pole keeping it close enough to not pull, but, far enough away that he had the freedom of movement to do the moves. After he finished the lesson he went back to the treatment room and fell asleep within the next 30 minutes. The nurses came in periodically to check his blood pressure to make sure it wasn’t dangerously low. One of the main reasons he was so sleepy was that one of the support drugs they gave him was Benadryl. The other is that the interferon stimulates his immune system so it causes him to develop fevers, feel achy and other responses. I read somewhere that it can make you feel like you have the worst flu you have ever had, Soon after getting home Ben feel asleep on the couch. True to form he developed a fever of 101.6. We gave him some Tylenol and the fever broke. We spoke with Dr Pearce and it was not unexpected. He will be in the clinic in the morning for day 2. He is a real trooper and this is not going to be easy for him. We have managed to have some laughs today.

Overall it has been a good day filled with hope, joy and activity.

8/1/2009

   I woke up this morning and after getting dressed I sat down at the computer to check our email accounts. Someone sent us a really great article about a new drug trial that will be starting soon. In my Google alerts there was also an interesting article about activating natural killer cells in the body to attack the cancer. I looked at both articles. After I finished I opened up Ben's web site. I realized as I hit the news link and was watching the page come up that I was looking for an update. I found myself chuckling. As you can imagine there was no new news on the site. I guess after 2 1/2 years I am expecting expecting to be writing updates in my sleep. Laughing at yourself is always a good thing and is a talent that I need to work on.

Last night the boys and one of their classmates went to Chuck E Cheese with his younger brother. I didn't go because I wasn't feeling up to it. I am not the biggest fan of that place. It can be very over stimulating. All 4 boys had a great time. They are really good friends to each other. Afterwards Ben and James went over to their house for a sleepover. We half expected to get a call last night and have them delivered half asleep to our doorstep. The last time James ended up coming home. As Stacey and I were talking about we remembered that on that night it was just James that was sleeping over. Obviously the 2 of them are having a great time. They haven't come home yet.

Ben will be going to the clinic early Monday morning to start the new chemo. The Interferon will be delivered by a shot in the butt. Ben doesn't do well with shots. Come at him with 1 1/2 inch needle to stick in his chest and he is fine. Put a 1/2 inch needle that is baby fine on a syringe to poke in his arm or butt and he flips out. Stacey and I have been joking about what we think he is going to ask us to get him for a bribe. I don't like needles either so I do understand his reaction. After he gets the Interferon they will watch him for a period of time to make sure there is no reaction and then he will get an IV with the Etoposide over 3 hours. After that they will watch him some more. There may also be some other support drugs they will give him to help with side effects.

We are in complete agreement that this treatment is what we need to do. We are still examining alternatives so we know what is out there. We have access to a great group of parents and caregivers of children and adults who are in the same fight we are. We share information regularly and even if the information we find out isn't applicable to Ben it may be something that helps another person. If you are reading this and know someone battling any form of cancer suggest that they look at the ACOR.org web site and sign up for the email list for that type of cancer. The lists are moderated. Some patients use it, but, most of the folks on it are caregivers and support for patients. It has definitely been one of the things that has helped us stay strong and find the courage we need.

7/30/2009

Ben spent the better part of today at the children’s oncology clinic at Albany Medical Center receiving some of his chemo. While we there we talked with Dr Pearce about our next steps with treatment. There is a study that looks interesting for a new drug, but, the study has not been published yet. We looked into a drug called Rexin-G, but, Ben is not eligible for the study because he is not 10 years old. We can look into getting it through compassionate access, but, it is hugely expensive and would not be covered by insurance. In my research the estimated cost is $500,000 per year. We have decided to keep that one in our back pocket for now. We are looking into a couple of drugs that we have learned about through an osteosarcoma email group we belong to on ACOR.org. One of them doesn’t even have a name yet. It is called MLN8237 and is in Phase 1 trials. Drug companies don’t usually name their drugs until they think the drug may make it to market. It has been helpful for one of the young women whose Mom emails regularly. Dr Pearce is looking into that one. It is an Aurora A Kinase Inhibitor. The complexity of the human body and the fight against cancer is amazing. I have learned about proteins, enzymes, genes, angiogenesis, apoptosis and other things that they never told us about in biology class. Based on the information that we have right now the plan is to stop the current chemotherapy regimen and start the new one as soon as possible. Unless we learn something new we are going to start Ben on a treatment plan that is centered on Interferon and Etoposide. Ben does not qualify for the study that is going on and the study recently closed to new patients anyway. Both of the drugs are commercially available for other uses so we should be able to get them. As always the question will be whether or not the insurance company pays for it or we do. Our insurance company has been great. We really have no complaints and in fact they have covered some things that surprised us. Dr Pearce also is looking into the best way for Ben to receive the drugs and the dosages. Interferon is an immune system stimulator and it can cause some side effects that include aching pain. He will receive large dosages and they will be given every day for five days with 2 weeks off in between. So he will have to spend 5 long days in a row at the clinic every 2 weeks. It will be outpatient though so that is great. We have heard of some folks who have responded well to this treatment. We are not ruling out any treatments, only choosing the one that makes the most sense to us for right now. One of the other treatments we would like to consider, but, seems unavailable for a number of reasons is an anti-IGFR antibody. I think if we had a way to get that one we would use it.

Last night at the birthday party everyone had a great time. James was disappointed and upset for the last 30 minutes or so because he didn’t get to choose the 3rd ball game they played. The kids played Dodgeball, Capture the Flag and Kickball. It seems James is not a kickball fan. It was wonderful to see the kids running around the indoor field laughing and having a great time. Ben had to sit down a few times and rest. At one point, while resting, he said, “Next time we have games that don’t make you run around so much.” After saying that he stood up from the chair he was sitting in and ran back onto the field to play dodgeball. Needless to say he is having a much more relaxed day today. After the party Ben O. came back to the house and the boys hung out for a while. They watched some TV and traded baseball cards with each other. One of the things we have seen is that given the chance kids look out for each other. Ben and James are there for each other and kids like Ben O. step up and try to help. At one point they were all playing a game that required you to reach up over everyone else and catch a tossed play ball. Ben couldn’t really do it so they kind of put him in front and if the ball was tossed over him somebody else caught it. I watched as Ben O. would jump up over the other kids and then hand it to Ben so he could get a turn throwing the ball. A few of the parents commented that Ben looked great. He does. His hair is coming back and is long enough to look like a short, summer hair cut. We have not told him that the tumors have grown and that there are more of them. We have decided to wait until we are sure that the Interferon treatment is what he will be receiving and then we will talk with him. If he asks us before then we will tell him the truth. We have never and will never lie to him or James.

We are so blessed to have a community around us that supports us the way they do. Thank you.

7/28/2009

  We have not told Ben or James yet about the scan results on Monday. Tomorrow evening we are having the birthday party for the boys at the All-Star Baseball Academy. The kids will have a great time playing games and using the baseball batting cages. They are so excited. Last week we put together bunk beds for the boys and they love them. Ben is sleeping in the top bunk. Last night I crawled into bed with him and when he woke up he was thrilled to see me next to him. I didn't really sleep much. I lay there listening to him breathe.We spoke with Dr Pearce today and she is consulting with several of the researchers on the treatments that are potentially available for Ben. There is a chemotherapy regime that uses interferon as a major component and that looks promising. There are several other trials, including Gleevac, that have shown some promise, but, we are hoping to find one that has demonstrated real successes. We have known that once the osteosarcoma metasticised the statistical odds were stacked against Ben. We have found hope from many places. The support we have received from you continues to give us strength, courage and hope. Tomorrow night will a night of great joy and fun. The boys will be running around and havi9ng a great time. Tonight at Noogieland the laughter of the children was music to my ears and gave me something positive to focus on.

7/27/2009

Yesterday Ben and I had a great time playing golf with Aunt Carol at the Fairways executive course that she lives on in Mechanicville. He played for 4 holes and the rested for 3 and then played the 8th hole. It was really humid out and that just sucked the energy out of him. He putts really well. He is eyeing my putter because his club is too small for him. In fact the Jr set that he has is too small. I may take him out to be sized for a starter set of clubs. He really enjoys being on the course and just swinging away at the ball. He needs to have someone who really knows golf work with him on adjusting his swing. He has limited mobility in his upper right arm so he is just chopping at the ball. Sometimes that is very frustrating for him. I have the number for someone who sent us a message the other week and I am planning on calling them in the next couple of days.

Ben had his scans today. They did a CT scan of his lungs and his sinuses. I don’t know what they said about his sinuses. I just hung up the phone after talking with Stacey. Janice, one of our favorite nurses at the clinic (love them all actually) called to tell us what the report stated. The tumors that we knew about have continued to grow. There are also additional tumors on both sides of his lungs. I do not have the exact numbers. One is too many. We will be talking to Dr Pearce at some point tomorrow about what the next steps will be.

When we were at the hospital today Ben stopped in to see his friends in the Radiation Therapy Department. They absolutely loved seeing him and marveled about how much he has grown since they treated him. It was a while ago and they have continued to keep track of him. They check this site regularly and whenever there is a new update they pass it around the office. It was an absolute joy seeing them celebrate Ben in the waiting room for the scans. Ben continues to amaze us and if we didn’t trust the hospital we would be a wondering if they were looking at the right scans. His hair is growing back and if I didn’t tell you he was fighting for his life and there was a monster attacking him from the inside you would think he was a healthy, fun loving 9 year old.

7/22/2009

As I am writing this the boys are rough housing in their bedroom. We gave them our gifts and they opened the gifts from Uncle Rick, Aunt Carol, Miss Kathy and GrammaMac. So far they have been thrilled with every gift. The other day Uncle Drew and Aunt Sandy gave James a Justice League of America comic book volume is ½” thick and it was a huge hit as were the books and Lego sets Uncle Rick brought today. GrammaMac gave the boys a giant red light saber. It is at least 6’ tall. They have already decided where it is going to hang in their room. Ben just walked into the room holding the giant light saber and using a creepy voice said, “Say hello to my little friend.” Ben of course received a Lego battleship that was a big hit. Aiva came over and we sang Happy Birthday to the boys and they blew out the candles. It was really low key. At one point after the cake I was standing by the sink and rinsing off the cake knife when Ben came along side me. He looked at me and joyfully said, “We’re 9 years old. I can’t believe it. Isn’t it great. This is really exciting.” I agreed and gave him a hug – after putting down the knife. The day is winding down. Thank you all for the birthday wishes. I have read them all to the boys.

7/21/2009 

  It has been nearly 1 month since I last provided you all with a full update. The Twitter updates are nice, but, as many of you have pointed out the full updates are missed. I am not exactly sure why, but, I have just not been able to bring myself to sit down and write. We have certainly had some pretty amazing experiences with the trip to Boston for Ben to be bat boy and the experiences at Double H. I am writing this to break the ice and get the words flowing again. After the last update I became keenly aware that it was only a year ago that we nearly lost Benjamin. At the same time several of the children and adults that we have come to know arrived at the end of their journeys on Earth. Writing about our experiences makes them so real for me that it can be very overwhelming. I think that not writing has only allowed me to slip deeper into a quagmire of negative feelings, thoughts and emotions. It may not have been noticeable on the outside, but, I have been struggling to function in this world. I am back, no excuses. I am focusing on the positive – focusing on Benjamin and James.

Ben is doing really well on his new chemotherapy. It does have the side effect of making him look like he has the goose bumps on his head. We have heard about worse side effects that can be very so we are thrilled that he is only having the mild one. His energy levels have improved, although we haven’t been pushing him too much. Last week he and James both attended a golf day camp at Mill Road Acres. The first day they allowed Ben to use a cart and he shot a 49 on 9 holes. He was thrilled and James was very proud of his brother. The following 2 days the cart was unavailable and Ben was not able to complete the 9 holes. He did participate in all of the lessons though. After the boys excitedly told me about Ben’s 49 on the first day I asked how James did. James looked a little sheepish and said, “Not so good.” Ben, with great enthusiasm, said, “What do you mean? Every time you hit the ball it really flew. He would step up to the ball and “WHACK.” The ball just took off. He hit is farther than anyone. “WHACK””WHACK”” James smiled and said, “That’s true I did it far.” They both continued to make assorted club hitting ball noises until we were laughing and I was telling them, “Okay, that’s enough.” It is really nice to see sport that James really likes. We are going to try and get both boys out onto a golf course soon. In the meantime we plan on taking them to the driving range near our house at least once a week. Ben has a set of Jr. golf clubs and James is using a set of clubs that had been cut down for Aunt Carol. Since I have a beautiful set of clubs there are no excuses not to play.

Tomorrow is the boys’ birthday. They will be 9 years old. It is wonderful and we are probably going to have as many parties as we can. We were going to have a party for family and some adult friends tomorrow, but, it looks like the weather is not going to cooperate. This morning Stacey said to me that she had “Made an executive decision - we’re going to move the party to Saturday.” The boys party for kids is going to be next week on Wednesday. We are planning on having it at the All-Star Baseball Academy in Latham. It should be a great deal of fun. We are just now getting the invitations out so it will be interesting to see who will be able to make it. There has been much discussion over whether or not girls will be invited. It turns out that some girls may not count as girls. We are doing the same thing with gifts that we did last year at the boys’ party. Instead of presents for the boys we are asking the kids to bring items that we can donate to the “Holiday Shop” at the AMC Children’s Hospital clinic - toys and things for adults too. Each year they set up a little shop in a conference room and allow the children to go through it and pick out presents for their family. The child life specialists help the kids make lists of their close relatives and help them pick things out. The gifts are all wrapped and then they bring them home to put under the Christmas tree or whatever gift giving celebration they participate in. We do allow the boys to each pick one toy before we bring everything to the clinic. Last year Dr Pearce ended up having to bring what we brought to them home to keep in her garage because they don’t have much storage at the hospital. Stacey loaded her car with 4 garbage bags filled with stuff. It turns out to be great re-gifting opportunity.

        

6/22/2009

I am woefully behind on updates to the site. I have at least 4 half finished ones to complete. I want to tell everyone about the Greatest Father’s Day weekend of my life. Last week we were given tickets at Gilda’s club during Noogieland for the “Walking with Dinosaurs: The Arena Spectacular” for the performance in Albany at 7 PM. We had wanted to take the boys, but, we have really been blowing our budget lately so we were thrilled. During the week the wonderful group of people I work with decided to do something nice for us and managed to get us tickets for the 3 PM show on Saturday. On Friday evening as she left our office the ring leader of the group who gave us the tickets said, “Don’t forget, tomorrow at 3. The tickets are at the will call window.” We weren’t sure what to do with the other tickets. We know so many wonderful folks to share them with. We talked about it and decided the Cameron’s family was the best choice. He goes to Gilda’s Club and Noogieland almost every week with the boys. I am sure the boys are all talking about the show today.

The 3 PM show was fantastic. It was amazing to see the life size dinosaur puppets walking around the Times Union Center. We were directly opposite the giant teeth that the dinosaurs entered through in the back row on the first level. The seats turned out to be perfect. The dinosaurs came directly towards us for a good deal of the show. It was cool to be at eye level with a 40 foot tall brachiosaurus. You could almost feel the breath of the T-Rex as it roared to the delight of the audience. It was a perfect mix of entertainment and paleontology. We were sitting near the platform that contained the puppeteers who were controlling the movements of the dinosaurs with the exception of the walking. Each dinosaur had a “driver” that was inside or beneath the dinosaurs. These puppeteers controlled all of the neck, tail and head movements and sounds. During the intermission the boys and I decided to give it a chance and went to the platform to see if they would talk with us. A very beautiful and kind young woman took the time to speak with us and explain their work. The boys really thought it was cool. They were still talking about it on Sunday. Kari explained to us that they controlled the larger neck and head movements with a device called a voodoo rig. She controls the smaller movements and the voice of the dinosaurs in her control. She uses a really cool, high end, tricked out joystick to control the mouth, eyes, eyelids and other movements of the head with one hand. She uses the other hand to play a keyboard that controls all of the sounds that the dinosaur can make. She talked to us about how she had worked at Disney World and the boys talked about their love of puppets, Lego League, robots and other things. James told her about Ben’s website and his page with jokes on it. Afterwards he reminded me that we needed to update his page. Something he hasn’t been interested in doing for a while. Later that night Kari posted a note to the guestbook. The boys did a happy dance when we showed it to them. They each had to read it for themselves. Kari you are a rock star.

On Sunday we headed out to Cooperstown, NY for the day. For those of you who keep track we didn’t miss breakfast at Circle Diner. We went there for breakfast on Saturday morning. Ben and I arrived first and sat at the table while we waited for Stacey and James to arrive. Ben couldn’t wait to tell the owner Frank and his favorite hostess about his upcoming trip to see the Boston Red Sox play on July 3rd. Frank is a big Yankees fan, but, tolerates Ben being a Boston Red Sox fan. Everyone was thrilled that Ben will be a Bat Boy that day in addition to going to batting practice with Jason Varitek. The other night they asked us to forward Ben’s clothing sizes to the Red Sox. A very good friend of ours has reached out through her business contacts and put this together. Of course we are never sure exactly how things will turn out, but, whatever happens this is really cool and Ben is shouting about it from the rooftops. We know that several people are already trying to get tickets for friends and family members to go to the game. I am sure there will be many DVRs recording the game in our area. James acquiesced the other day to not wearing Yankees gear to the game since the Yankees won’t be playing. While we were sitting at the Circle Diner a nice man sitting across the aisle talked to Ben about the Red Sox (big fan) and Fenway. He pointed out that the Red Sox would be playing Seattle and that Ken Griffey, Jr. would be playing. He told Ben that he knew him and his father. Ben loved hearing about it all and the nice gentleman wished him well and told him to enjoy the game as he left. Stacey and James arrived and we had our traditional breakfast at the Circle Diner.

The trip to Cooperstown was nice. We talked and laughed about a number of things. It took us about an hour and a half to get close enough to Cooperstown for the boys to consider us there. We ended up parking in the Yellow Lot just outside of town, near the Farmer’s Museum. We decided to bring the wheelchair with us because we knew it would be a long day and we wanted to preserve as much of Ben’s energy as possible. Stacey and I each thought the other had gone to the bank so neither of us had cash with us. The ride into downtown on the trolley was going to be $10. We looked at each other and checked for sign that the driver might be able to take a credit card, he couldn’t. Ben reached into his pocket, pulled out a $20 and stepped towards the door to the trolley turned to us and said, “Don’t worry, I’ve got this covered. It’s Father’s Day.” I brought up the rear carrying the wheelchair onto the trolley. We arrived in downtown Cooperstown and went to breakfast at a restaurant called TJ’s after I stopped at an ATM. The breakfast was great and the boys were thrilled because they gave them a packet of 10-15 baseball cards instead of crayons and paper. We talked with the family next to us. They were restarting a new tradition because the Hall of Fame game was changed this year. Everyone in the town just seemed to be in a good mood. We finished and then went out to Main St to stake out curb space for the parade that started at Noon. While we waited the boys and I went into a card shop. The boys poured over the cards. I told them they could each pick out 1 card. James found a Derek Jeter card that was “signed” and Ben found a reproduction Ted Williams card. Both boys were thrilled and it was only $8 for both cards. We had told them that they could each spend $25 on souvenirs for the day. The parade consisted of local dignitaries, celebrities, business folk, organizations and the graduating class of the local high school in trolleys. It also had 3 filled with the ball players that would be playing in the game that afternoon. As the parade went on we had to keep pushing Ben and James further into the street because many of the adults along the parade route seemed to think they were more important than the children around us. The guys on one side of us did a great job of picking up candy and passing it back to the children that didn’t want to go into the street to get it. As the trolleys containing the players went by us one of the players threw a baseball card to Ben. It landed right in front of his wheelchair. Ben reached down and picked it up. It was a Paul Molitor card. I looked back to the trolley and indeed Paul Molitor was sitting right there. I’m still not 100% sure who in the trolley actually tossed it. It was now Ben’s mission for the day to get Mr Molitor to sign the card. It would prove to be a tough thing to accomplish, but, Ben made it happen through a crush of adults along the fence with his brother backing him up. The game was great and I could write a small book about everything that happened while we were there. Most of the adults demonstrated great kindness towards us and the other children that were in attendance while some adults took advantage of the relaxed atmosphere and disorganization of the first time event coordinators to get signatures they could sell. We saw some dealers and adult collectors who were very gracious, but, it only takes a few to mess up a good thing. The day was great and Ben and James worked together to get Ben up to the fence along the 3rd base line through a crushing crowd of mostly adults. Ben reached his hand over the fence towards Paul Molitor holding a sharpie and the card in it. James was standing behind him shielding him from being smushed and encouraging him. I was squatting in the bleachers trying to keep an eye on them without blocking the game from the spectators around me. I couldn’t take watching the crowd of adults squish the children around them intent on getting their own items signed. I shouted, “Hey adults, get out of the way and let the kids get there things signed. Today should be all about the kids.” The people around me in the stand cheered in support of my words. One guy standing near the boys turned around and shouted, “Give me a break.” I then shouted, “Mr Molitor, when you’re reaching for items to sign only take items from the hands of children.” Ben keeping his hand held high over his head, on the tips of his toes, reached over the fence towards Paul Molitor and I watched as the next item he grabbed was the card in Ben’s hand. The boys bounded back to their seats with huge smiles on their faces – mission accomplished. I saw Paul Molitor reach past an adults hand and take the next item from a boy that was standing near Ben. The game was great and we all enjoyed our time at DoubleDay Field.

James and I went to the Cooperstown Wax Museum while Stacey and Ben ate a little lunch. James really wanted to go to the Wax Museum. We tried to talk him out of it, but, he really wanted to do it. I told him that in the past when I have gone to these “Wax Museum” type places they were very disappointing, cheesy and not worth the money. I jokingly said, “Do you want to go badly enough to use your souvenir money to pay for it yourself?” He immediately replied, “Yes.” The two of us enjoyed walking quietly through the displays. For the most part it was better than I expected. James agreed that the Babe Ruth display was indeed cheesy. It was overpriced for the wax figures, but, not a waste of money because I was spending time with James.

After the Wax Museum we headed to the Baseball Hall of Fame. The boys participated in a scavenger hunt that took us throughout the entire facility. They absolutely loved it. We looked at the displays for minute details. We took pictures in front of their favorite displays. We talked about the history of Baseball. Ben had a religious experience in front of Babe Ruth’s original contract with the Red Sox. It was really a godsend that we decided to bring the wheelchair for Ben. He never would have lasted all day. He would go from walking with great energy to just dropping into the chair to recharge his batteries.

After the Hall of Fame we headed back to our car on the Trolley. I carried the wheelchair onto it and sat in the back with Ben while everyone else was towards the front. As we sat there going through the city Ben put his arm around me and asked in a smiling, hopeful tone, “Did you have a good Father’s Day Daddy?” I looked at Stacey and James sitting next to each other four rows ahead of us smiling and laughing. I thought about all of the wonderful things that had happened that day and looked at him. I found myself choking up as I said, “Ben, this was the best Father’s Day ever.” He asked pointedly, “Are you crying?” I said, “No, I am just choking up.” “Is it a good choking up?” “Yes, Ben, it is a good choking up. It has been such a great day that I wish it could never end. I am just really happy.” “Good, than it is okay. I love you Daddy. Happy Father’s Day.” I hugged him and turned to watch the trees go by.

6/16/2009

I watched this morning as Ben happily ran across the front lawn and up the street towards the bus stop to catch the school bus. He was still pulling on his Red Sox field jacket as he ran. I could tell he had a big smile on his face even though I couldn’t see it. As we sat in church on Sunday before the service I explained ot him that he was going to be receiving a drug called Sorafenib. He was confused and a little taken aback when he asked, “What about the Gleevac?” I told him that the drugs were related and that we had decided to start with the Sorafenib first. He doesn’t like it when we change plans. I must admit I’m not a big fan of it either. I like to come up with a plan and stick with it until we know we need to change. The worst time psychologically for both Ben and me is not having a plan or having to wait for information to help form a plan. We are all happy that we know what we are doing to battle the osteosarcoma.

6/17/2009

Yesterday Stacey spent hours on the phone with doctors, dentists, a specialty pharmacy, the health insurance company and a hospital. She was trying to get the new drug Nexovar (Sorafenib) delivered and paid for as well as the details regarding Ben’s surgery tomorrow. Ben is having his baby teeth removed tomorrow at Samaritan hospital in Troy, NY. His permanent teeth are all coming in, but, for whatever reason they are not pushing out his baby teeth correctly. It places him at an increase for infection and other issues. The Reclast (Zolodronyc Acid) he is on can cause jaw bone issues as a side effect and having the teeth issue could compound the problem. It also may prevent us from having to give him braces on his teeth when he is 16. All of the doctors, his regular dentist and the oral surgeon we spoke with agreed that it was necessary and should happen now during the chemo side effect lull when his counts are all good.

Originally we thought the insurance was not going to cover any of the dental procedure or the hospital. Our dental insurance really stinks. The health insurance decided to cover the hospital portion of the surgery so we only have to pay for the oral surgeon out of pocket. The Sorafenib is another matter. Our health insurance declined to pay for it. The case worker has been wonderful. He immediately suggested that we appeal. Stacey talked with the pharmacy and the manufacturer at length. We have submitted my W-2s and paperwork for the manufacturer’s reduced or free drug program. Our out of pocket costs for the Sorafenib is $550 for a 10 day supply. When we told Dr Pearce she was very surprised that it wasn’t more expensive. Stacey and I were also pleasantly surprised. We found out why the price seemed so low. It is really a 5 day supply that we received. Stacey is working with the pharmacy to get additional supply. They were trying to be nice and just send enough to get us through until the insurance kicked in. We originally thought this was going to be a $12000 week, but, it looks like it will end up only being a $5000 week. We are so blessed to have the Ben fund. Thank you for everything you have all done to help us take care of Ben.

6/12/2009

  We have discussed the options with Dr Pearce and she has researched the trials and drugs that are available for Ben. The Gleevac(Imatinib) study that is going on in Syracuse is unavailable for Ben. It is closed. In looking at the other studies and the information that was sent to us after Stacey spoke with Dr Kim at the NCI(National Cancer Institute) we have decided to give Ben a drug called Nexavar(Sorafenib). It is similar to the Gleevac I mentioned earlier. They are both tyrosene kinase inhibitors. I know that is like saying that we are using a flux capacitor and interacitor, but, that is the language we find ourselves speaking these days. We are finding that trials we thought were open or available are closed or not accepting new patients. One promising drug is only available in a doble blind study and we are not ready to give Ben something that could be a placebo. We asked Dr Pearce what she would give him if we did not have to worry about availability or cost. Nexavar it is and we will keep the Gleevac in our back pocket. It turns out that we can only get the drug through a specialty pharmacy and that the manufacturer has to give us permission. Stacey spent a couple of hours yesterday and today dealing with the manufacturer and Albany Med to make it available. The woman at the manufacturer was very nice and the documents were ultimately faxed to Albany Med and we confirmed that Dr Pearce has them to fill out and fax back. Hopefully they will have the documents by Monday. After the company formally agrees to make the drug available to Ben we will see if our health insurance will cover the costs of the pills. It is our understanding that he will receive it orally in pill form twice a day. We don't know the dosage or the cost yet. Based on what we have found on the internet and with Stacey's discussions with the manufacturer it averages about $3500 a month.

         

  Enough medicine talk. Last night at baseball practice we had a great time with the boys playing against the adults in a pick up game inside the gym. Ben actually pitched to me. I scared everyone in the room, including myself, when I hit a screaming line drive straight back at him. He ducked just enough to have it skim across the top of his head. All I saw was the ball heading towards his face and the shocked look on the adult on 2nd base behind him. Tony thought it was going to hit Ben for sure and then at the last minute he saw the ball heading for him so he ducked too. Everyone had a great laugh after the play was over.

      

  We went to a birthday party tonight for one of the boys on the team. Everyone is very excited about their playoff game tomorrow at 10:30 AM. The boys will be getting their early so we can take pictures in front of the Green Drakkoman sign. The game is at the Boght Baseball Complex on Field 7 off of Rt 9 north of Guptills in Latham. The team we are facing has some of the boys friends on it. I am anticipating that it will be a good game. We played the other team early in the season and they scored most of their runs when during the coach pitch innings. There are no more coach pitch innings. The kids pitch the entire game with the exception of a couple of special situations. The Green Drakkoman vs Price Chopper - two teams, two different shades of green. The other coach is a great coach and focuses on fun and being positive too.

6/10/2009 Part 2

 On Tuesday he went for his bone and CT scans. He has 2 tumors on 1 side and 1 on the other. We are stopping the current treatments of MTP, Gemcitibine, Taxotere and Reclast (Zoledronic acid). Ben will be entering a trial for Gleevac (Imatinib Mesylate) next Tuesday. He will be taking 1 pill twice a day. We are all very upbeat and positive about this. The osteosarcoma that Ben has seemed to be very aggressive from the beginning. Gleevac holds a special place in my heart. I had run 3 marathons before Ben's diagnosis as part of the Team in Training program for the Leukemia and Lymphoma Society. Gleevac is a drug that was championed by the LLS and they contributed significantly towards the research. At one of the marathons a Mom told about her daughter in the hospital dying. They had been told she probably had 24 hours to live, she was comatose and being Catholic she received the last rites. The doctors told the Mom that there was a new drug that had just started to be given to humans and they could give it to her daughter, but, there was very little hope. She approved them giving it to her daughter. When she stopped at that point in the story, choking back a tear the Mom looked to the audience and said, "I would like to introduce you to my daughter." as a beautiful 12 year old girl walked onto the stage. Gleevac is now being tested for osteosarcoma.

As an aside I keep a list of names next to my computer monitor at work of the children and adults we have met along this road. Many of the names are folks on here. Today one of my colleagues looked at the list and asked me about it. He said he didn't recognize any of the names as coworkers. I told him who they were and then I pointed at a couple of them. I pointed out Bryan who wanted to teach Ben how to snowboard, but, passed away before he had the chance. I pointed to another little angel and then I pointed to Kelly and Todd. I told them how these two brave adults faced their battles with courage and strength. I pointed to a gentleman who had inspired Ben with music and funny videos. I pointed to Brendan's name and told of him going to Siena and befriending Ben. I stopped and said these are my heroes and inspiration. They have taught me and continue to teach me to be concerned about the things that really matter. I pointed to the little
squiggles next to some of the names and said those represented angels wings. He looked at me and quietly said, "Wow, you really have a rich life."

6/10/2009 Part 1

  We just heard from Dr Pearce about Ben's scans. He has 2 tumors on 1 side and 1 tumor on the other. Dr Pearce found out last night and didn't want to disturb or evening. I am sure she had a rough night. She has already found another clinical trial for us to enter Benjamin into. It is based out of Syracuse and involves taking a pill everyday. She told us that it shouldn't have too many side effects and that it would not interupt summer too much. She also said that we should have as much fun as possible this summer. She also said, "There is always hope."

6/8/2009

The regular season for The Green Drakkoman baseball team ended on Saturday with a win. Ben came up to bat twice and went down swinging. Ben's blood counts were very low and I think his energy level was suffering. He just had surgery on May 11th that involved going into his chest between his ribs and here he is swinging a bat. He wears lacrosse rib armor when he steps up to the plate. James made it to 1st base on a walk and stole 2nd base in a close play. He also ended up making it home on an RBI. We are incredibly proud of them and all of the members of the team. We finished with a record of 3-8-1. The playoffs will be starting after all of the other teams finish their seasons. I will keep you all posted.

Yesterday Ben, James and I went to a local driving range and hit a couple of buckets of balls. I just showed the boys how to hold the clubs and let them swing away. Ben amazed me at how well he was doing. He did one really amazing swing in particular and then pooped out for a while. I wasn’t so sure he didn’t hurt himself. I talked to him for a while and he wasn’t in pain when I touched his ribs and he was breathing normally so I let it go. After we were home for a while I asked James about hitting the balls and he said, “I enjoyed it a lot more than I thought I was going to. It was really fun.”

Today was counts day for Ben. On Thursday his ANC was 10 and we thought he might end up with a neutropenic fever over the weekend, but, he didn’t. As you know we let Ben pretty much regulate himself and watch him for signs that he is having troubles. We also try to limit his exposure to sick kids as best we can. Ben and his mom went down to the hematology/oncology clinic at the Children’s Hospital at Albany Medical Center. I helped them gather the light sabers that we have at the house. We managed to find 4 of them. I wasn’t quite sure why Ben was so adamant about bringing them. I guessed that he wanted to show them to one of the doctors, nurses or residents. I was wrong. I found out later that Ben had decided the clinic needed a Light Saber Academy. His mother went along with it and I think Dr Pearce had agreed to it last week when his heart rate was breaking 200 not knowing what would happen. On the ride to the clinic Ben asked his mom, “Should I ask the students to call me Master?” She replied, “Are you going to call them Padewan?” They finally agreed that he would be just Ben. I guess it was quite the sight at the clinic today. Ben had a bunch of kids in the hospital hallway taking light saber dueling lessons and having friendly light saber battles - one hand holding a light saber, the other moving their IV poles around making the adults nervous. The kids were laughing and having a great time. It was all Ben’s idea and he made it happen. I am not sure if this will be a regular program, but, if it is we may need more light sabers in order to arm the doctors and nurses. I smile thinking of Dr Pearce dressed as Obi Wan.

6/4/2009

Today was a tough day of chemo for Ben. He reacted badly to the MTP. He had the rigors and his heart rate went up to a little over 200 beats per minute. He had quite the workout. The actually called Dr Pearce off of the floor down to the clinic to check on him. He is very tired right now, but, who wouldn't after the exertion he went through. We are going to go out to dinner at Applebee's. It's Ben's choice tonight. We are all looking forward to tomorrow.

Stacey read my last update and started to cry a little. I asked her what was wrong because I thought it was all good news. It turns out I did some selective hearing. I heard that they showed necrosis and apparently focused on Ben saying "Dead, dead, dead...." when the sentence about them showing some necrosis. It was really that most of the rest showed NO necrosis. I am so sorry to have misinformed you all. I guess I was hearing what I wanted to hear. We are focusing on the positive and that is that the chemotherapy did kill a good number of the tumors. So it is working - just not to the level I lead you all, and myself, to believe.

6/3/2009

We have really great and positive news to share with everyone. We heard back from the doctors regarding the pathology of the 16 nodes/tumors that were removed from Ben’s left lung. I am paraphrasing and the numbers are approximate. It looks like 1/3 of the nodes/tumors removed were not tumors. They were artifacts/scar tissue from previous surgeries and other non-cancerous nodules that any of us might have at any given time. The rest unfortunately were osteosarcoma tumors. Of those about half were completely necrotic or dead. The other half of the tumors all showed signs of necrosis (dead tissue) of varying levels. In other words all of the cancerous tumors removed were either dead or dying. As Ben said cheerfully when his mother told me the good news – “Dead, dead, dead…They were all dead.” What this means is that the current treatment plan is working. He will continue to undergo chemotherapy for the foreseeable future and into 2010. We will probably not adjust his current chemo cocktail unless it is necessary. Next week, on Tuesday, Ben will receive a chest CT scan and a whole body bone scan. The scans will give us a great picture of where he stands and will determine NED status. For those of you who don’t know NED is an acronym that means – No Evidence of Disease. I have really come to love the name NED.

Last week Ben and James both had an opportunity to meet James Preller. He is a local author of children’s books. Some of his titles are very popular among the spooky, mystery fans. After Ben’s diagnosis I did a search on osteosarcoma books and found one called “Six Innings: a game in the life.” I was curious and immediately went out and bought the book at our local bookstore. The central character of the story has osteosarcoma and is confined to a wheelchair so he has to call the play-by-play instead of participating in baseball. It is a story of friendship, baseball and life that takes place around a championship little league game. At the time I didn’t think Ben was old enough for it. Recently we read the book to him and he has almost finished it himself. The book is dedicated to Dr Jennifer Pearce - the same Jennifer Pearce who is Ben’s oncologist. Ben asked Mr. Preller about it and he told Ben that Dr Pearce was his son’s doctor. His son had leukemia when he had the idea for the story. He also told Ben that his son recently turned 16 and had just passed the tests to get his driver’s license. When Ben told me the story of their conversation Ben said with a big grin, “Now he really has something to worry about.”

On the topic of baseball The Green Drakkoman team is doing really well. We won on Monday night. It was our 2nd win. The team is a really amazing group of kids. Every one of them supports each other in ways that are genuine and beautiful. They cheer for each other. They encourage one another and console them when things don’t go well. One of the kids hit a home run during the game on Monday. The boys were so thrilled in the dugout they could barely contain themselves. They celebrated together like each of them had hit it themselves. I heard 2 of them tell Jeremy they were proud of him. I almost fell over. Our next game is tonight at 6 pm and our last regular season game is at 12 Noon on Saturday.

We are all looking forward to the golf tournament on Friday. I was talking to Dave Donlon last night and the attendance is going to be great. It was almost a sellout – only 20 slots away. It is going to start with 5 kids hitting tee shots simultaneously to kick it off sometime between 8:30 and 9 am. Ben and James will be there for the start and then they will be taken to school. They will return for the awards dinner as soon as school gets out.

5/24/2009

  Today was an absolutely great day. The day started with Ben making sure that I was awake so we wouldn’t be late for church. Even Gramma Mac was ready before me. We made it to church with plenty of time to spare. Ben was a little disappointed because today there was no Sunday school so he had to stay in the sanctuary for the whole service. Everyone was thrilled to see him and his presence was noted by the minister in the announcements and in the main prayer. At the end of the service one of the members of the congregation was so thrilled to see him that he came over shook Ben’s hand and kissed him on his bald head. I could just tell that he was so happy the moment just came over him.

After the service the 3 of us headed to Circle Diner for breakfast. Just as they say us my phone rang and it was Stacey saying that she and James were heading over to join us. We switched tables with no fanfare. I absolutely love that place. They treat Ben really well and manage to pull of what I think is almost impossible. They make him feel welcome and special because he is a regular, not, because he is bald. If you happen to go there for a meal tell them “Ben sent you.” and thank them. Ben actually ordered the big breakfast today and did a great job on it.

After breakfast we finished making the overhead soda bottle water rocket launcher project we started on Saturday. If you check out youtube.com you can see some other folks making them - http://www.youtube.com/watch?v=icQhLT4QCO8. We have talked about doing this since last summer and it was a blast – pun intended. We fired it off 6 or 7 times and we had a great deal of fun. I think if we make another one I will make some changes to the design. If you have kids this is a cheap way to have a great time and it is even a science project. We also used it to launch a water balloon into the air. It went so high I think it would really hurt to get hit by it. The fun ended with Ben going inside because he was tired while James, Aiva and I had a water gun fight with some neat water guns Stacey bought of the boys this year.

After dinner James, Ben and I went to see Star Trek. The boys thoroughly enjoyed the movie. I did jokingly cover Ben’s eyes (I couldn’t reach James) when there were a couple of scenes that were a little too sexy. It didn’t really matter because if there was kissing they both closed their eyes anyway. When we arrived the theater is doing a “Stars of Hope” promotion to raise money for childhood cancer research. Ben suggested we donate so we did. We also waited in line after the movie to play a game they had set up. The boys didn’t win any prizes. Ben turned to me as we walked away and said, “Hey, we made a donation to a good cause.” James added, “And it was fun.”

As we drive home we passed Hoffman’s Playland. We stopped and found out it was open until 10 PM. Since it was just before 9 we headed in for fun. James and I went on the bumper cars. Ben decided bumper cars were not the best ride to go on 2 weeks after lung surgery so he watched as James and I bumped each other. Ben decided he wanted to go on the Tilt-A-Whirl ride. I asked him if he was sure and he said yes. Ben absolutely loves that ride for some reason. He has headed to it right after nasty chemotherapy. The girl at the ride kept an eye on him and I don’t think she would have taken his ticket if he hadn’t offered it to her. James ran off to go on a different ride and I kept an eye on both of them with my feet planted firmly on the ground. Ben ended up going on the Tilt-A-Whirl twice and we all went a couple other very tame rides. As we were heading to the car to head home Ben turned to me and said, “I don’t think the surgeons would be really thrilled if they knew I went on that ride tonight.” I told him I thought he was probably right and that they would probably find out by reading this site. He had a big smile on his face the whole time he was on the ride. Well almost the whole time.

5/23/2009

  Ben is sleeping right now. He tires very easily. His lungs are getting stronger each day. On Thursday he went to the hospital and had standing chest x-rays taken from the front and the side. He is doing well. He has a little air pocket in his chest. It is called a pneumothorax. They can be very painful, but, he is not complaining. He does say that his back is hurting when he stands for a while. It hasn’t grown and eventually the air will be absorbed into his body. The Physicians Assistant at the clinic told Ben that he is absolutely amazing. Dr Porter told him he is the energizer bunny. The PA said that Ben needed to write a book to tell other patients how to be strong and get through this with the style, grace and good humor that he has witnessed. I am so in awe of this little boy. Today he came to see The Green Drakkoman baseball team play. He actually contemplated taking a turn at bat. I will not be surprised if he steps up to the plate in the next game – Wednesday at 6. Tonight after the game all the players gathered in a circle and we put our hands into the center and discussed what to shout after counting 1-2-3. One of the boys suggested “sportsmanship” and many other suggestions came pouring out of them. One of the 7 year olds who normally is very quiet said, “Why don’t we say something for Ben?” Several other boys agreed immediately. I asked what they thought they should say and they were unsure. One of them said, “Let’s just say ‘Green Drakkoman.’” Ben thought that was wonderful so I counted 1-2-3 and the cheer went up to the skies. I truly love these boys. Each game they become more and more of a team. They are so compassionate towards one another that you can’t help but enjoy watching them. The Green Drakkoman sign is in center field and it clearly says “Focus on the Positive.” Next game we will take a new team photo in front of it. After the game one of the dads from the other team came over and shook my hand, looked me straight in the eyes and said, “We are pulling for your boy every step of the way. He looks great.”

  Earlier this week we had a meeting with the school about the plan for Ben next year. Unfortunately, I could not get away from work for it. Stacey broke down and started crying during the meeting at one point. The school district is working so hard to make Ben feel like a normal kid at school. His main teacher for next year has been spending his own time to learn about chemotherapy and its effects on teaching children. I cannot imagine ever finding a more supportive place to have Ben. They are fully prepared to have Ben attend when he can and provide tutoring in school, at home, in hospital. Stacey and I are so scared sometimes and I know that I have been practically losing my mind lately. The other day I was in a not so good frame of mind and a simple conversation with someone I went to high school with turned my outlook around. The conversation had little to do with our situation directly. I found it somehow comforting though. I think these small miracle interactions are what get as all through what ever we are facing.

5/20/2009

  On Monday I spoke at a major fundraiser for the Double H Ranch in Lake Luzerne, NY at the Saratoga National Golf Course. As many of you know Double H has become very special for our family. It has really become a place of great joy, renewal and inspiration for us. I was asked to explain to an audience of a couple of hundred people what Double H Ranch means to us. I was surprised at how difficult it was to deliver this speech. I didn’t really know anyone in the room. Here is the speech: 

  In September of 2006 my, then 6 year old, son Benjamin was diagnosed with a rare cancer called osteosarcoma in his right upper humerus. He had limb salvage surgery that removed the tumor and replaced 80% of his upper arm bone with a donor bone in February of 2007.

  At the recommendation of his doctors and nurses we signed him up to attend one of the summer sessions at Double H. I will never forget that first time as we pulled up to the parking lot. The counselors were cheering for the children. As we parked 2 of them came over to the car. They introduced themselves to Ben, his twin brother James and the rest of us. One of them took Ben’s hand as he was a little bit afraid. He had never stayed overnight by himself any where before. The other ran on ahead shouting, “Hey everyone. This is Ben Stowell. It is his first time at Double H.” You would have thought he was a rock star. They welcomed him and us with a wave of love that overwhelms me to this day. Any fear or trepidation he, or any of us, had disappeared. The love continued as we entered the main building to sign him in. Everyone, even the parents, campers and families who were signing in cheered for the next folks walking in the door. I cannot drive onto the property without shedding a tear…of joy.

  We turned over our most precious wounded bird to the loving care of strangers and they returned him to us shining brighter than I ever could have imagined. One of the hardest things for us to do throughout this journey has been to preserve Ben’s childhood. Double H has been key to grounding his childhood. Ben was able to find a community of people who understand what he is going through in a way his family can’t. Double H has literally been a lifeline for him. The summer program allowed Ben to be independent. To experience unfettered life. To ride a horse. To push himself up into the trees on a ropes course and ride a zip line back to the earth. To Laugh. To celebrate all that is good in the universe of a child. Ben, like many of the children, participated in every activity offered to him with a joy and zest that is contagious. The children’s lives at camp are not interrupted by meds or IVs. The nurses bring any medication they need to the kids. If the child is out riding a horse, playing ball or making art the nurses find them and give them their medicine with as little interruption as possible. I could speak for an hour about just one of Ben’s days at camp. He is the quintessential Double H camper and Double H is the quintessential camp for kids like him and families like ours. We have participated in family weekends. The winter adaptive program has taught Ben to snowboard and me too. 46 years old, never on a snowboard in my life. Ben and I raced down the mountain. He won. If they can teach me they can teach anyone.

  I was up at Double H yesterday to pick Ben's twin brother up from a weekend that was hosted at Double H for the siblings and children of those facing life threatening diseases. Another piece of the magic of Double H.

  In March of 2008 we found out that the osteosarcoma had metastasized to his lungs. We were told that it was inoperable. He started on the highest dose of a chemotherapy drug called ifosfomide that was possible. Ifosfomide is a drug that has a lifetime max that can be given to someone. It has a side effect called neurotoxicity. It can cause the patient to exhibit symptoms of manic-depression and schizophrenia. In this …last ditch…..effort he was given doses at levels that caused our precious little boy to become someone we had never met before. The infusion rates were adjusted and he returned. We spent 5 days at a time watching for changes so the medicine could be adjusted. We did not know what was going to happen so we arranged for Ben’s Make A Wish trip to happen as soon as the treatments were over. We also Double H to fit Ben into camp a week after we were to return from the trip. We headed to San Diego and LegoLand. The day after our arrival in San Diego Ben’s immune system dropped through the floor. The good bacteria in his body turned on him and over the course of a week his body began destroying itself. He was hospitalized and at one point while I was taking care of James my wife was asked to sign a DNR. I called Double H to tell them what was going on and that Ben would not be able to make it to camp. The amazing young woman on the other side of the phone said words in such a positive, loving, caring tone that I will never forget – “Oh Mr Stowell. Don’t worry Ben will make it to camp this year. You just get him home and we will have a place for him no matter what.” I immediately went to the hospital and told Ben what she had said. His smile lit up the room. He had not smiled since entering the hospital. I saw a spark ignite in his eyes. Within 24 hours he had stabilized. Within 48 hours of that conversation we were seeing improvement. There was also a San Diego fireman who was a lymphoma survivor who showed up with a showed up with his Ladder crew. Ben wants to be a fireman and is an honorary member of the Latham Fire Department. He told Ben that he was never alone and that fireman always stick together, support each other and never give up. I am convinced that without Double H and that fireman our trip back from San Diego might have been a very different one than it turned out to be.

  The ifosfamide worked and subsequently it was determined that the tumors had been shrunk enough for him to be operated on and they were removed. Chemotherapy has continued.

  We got Ben back to Albany Med and then home. A few days after he was home 6 counselors from Double H showed up on our doorstep. They said, “Even though Ben is scheduled to come to camp before summer’s end they wanted to make sure camp came to him.” That day the boys had a blast and a little bit of Double H magic was in our home. Ben made it to camp and had an amazing time. He is doing well. He is looking forward to 5 very special days at camp this summer.

  The osteosarcoma has returned 2 additional times. On Monday May 11th Ben had an operation to remove 16 tumors from his left lung. He was discharged today and technically is considered NED – No Evidence of Disease. I was informed as your rounds of golf were ending that he had arrived home. You may think I am a little crazy to be here right now. Our family can think of no better place for me to be then to be here speaking with you about Double H. I asked Ben this morning for 3 words to describe Double H. He immediately said – FUN. He thought for a little while and then added Special and GREAT!. I also asked him if there was anything he would say to a group of people who helped make Double H possible by volunteering or giving money. He immediately replied with a loving and earnest, “Thank you.” As Ben’s dad and a man who is more used to being on that side of this podium I can only echo my son – “Thank you!” It is my hope that none of you ever have to really know how wonderful the Double H Ranch truly is.”

5/7/2009

Last night I took Ben and James to the circus. Stacey and Cousin Betty decided not to go so we invited 2 of the boys friends to go. It was just me and the boys. 1 adult and 4 8 year old boys navigating through a very crowded circus show could have been disastrous. Not with these kids. They were fantastic. I asked them to always stay focused on each other and make sure they new where I was at all times. They followed through beautifully and we had a blast. As an adult any of the acts were not very new to me, but, watching the kids explode with laughter or “oooo” and “aahhh” was a great experience. We laughed the whole way home as I asked each of them what their favorite acts were. It was wonderful watching these 4 friends make a memory. I think they will remember laughing together at the clown that popped bubbles that made a fart noise when they exploded for a very long time; not to mention the giant elephant poops that made them laugh hysterically. They were also impressed by the 7 guys on motorcycles speeding around inside a spherical cage that was so small it was amazing they could even fit inside it standing still. The aerialists were cool as were the “bendy people” who were amazingly flexible and strong. I know I will remember the night for the rest of my life because of the joy of these boys. I felt selfish because I was the only one of their parents that had the chance to spend the evening with them.

Tomorrow night there is a fundraiser for the Ben Fund and to celebrate the release of their “Recipes of Love” cookbook at the Blue Creek Elementary school. It will run from 4-7pm. A local pizza place – Little Bites & More – will have pizza “to go” for the people who preordered it. The 3rd grade class will be distributing and selling the cookbooks. In addition to the cookbooks 3 NFL players have volunteered their time to sign autographs throughout the evening:
                    George “Butch” Byrd: 5x All Pro Running Back, Buffalo Bills
                    Derick Brown: 1st Round Draft pick Tight End, NY Giants
                    Tim Sherwin: Hall of Fame Watervliet HS and Boston College, Tight End, Baltimore/Indianapolis Colts and the NY Giants

               
They are also going to raffle off a number of items that include: autographed NFL memorabilia, gift certificates from local businesses and other items. I know that the Giants sent an autographed photo of Justin Tuck that he autographed specifically for this event. There are also gift certificates from one of Ben’s favorite restaurants – the Circle Diner.

Ben received his L-MTP-PE chemotherapy today. It made him really cold and gave him the rigors. The first time I saw Ben get the rigors it was a little frightening and then Stacey told me it wasn’t even close the first time he had them when they were in NYC. Hold your hands out in front of you and tighten every muscle in your arms and hands. Imagine having your whole body do that and not have any control over it. If he has it really bad he receives a medicine that is a muscle relaxer. It knocks him out so we try not to give it to him unless he really needs it. When I spoke with Stacey she said he was comfortable and watching TV and just recovering from the side effects. The rigors is exhausting so he may not go to baseball practice tonight. It will be up to him and how he feels at 6 PM. The really big and great news is that Ben’s hair is growing back. We aren’t sure how long it will last or what it will look like this time. It is definitely growing back though.

5/6/2009

The game last night was amazing. Kris, our assistant coach, and I drafted a team of the most wonderful boys. They are supportive of each other and at the same time the beautiful, slightly imperfect 7 and 8 year olds they should be. I am watching as they become a true team and last night they really showed their strengths developing. Two spectators who have watched the 3 games so far told me after the game they have seen improvement. Ben is our lead off hitter and he came up to bat 3 times last night in 5 innings. We scored 3 runs but only 2 counted because the game was called because of darkness in the middle of the 5th inning. James actually scored the 3rd run and Ben made it to 2nd base. The team managed to load the bases 3 times. Our biggest issue is with the coach’s ability to pitch during the first inning. The boys pitch after that. Every team we have played against scores their runs when the coach is pitching. Last night we tied 2-2. One of the kids actually said, “Both teams won.” He quickly added, “But we scored the most runs.”

After Ben struck out for the 2nd time he walked back to the dugout with a big smile on his face and spring in his step. He had a full count against him. He had foul tipped 1 pitch and had 3 swinging strikes. He put his bat away and turned to his Mom and said with a grin of pride and satisfaction, “That’s the longest it has ever taken them to strike me out. I did great.” The entire team is picking up on his example and we point out to each other to always, “Focus on the positive.” Ben and James were both walked in their next at bats. Almost every player managed to get on base one way or another last night.

Fly 92.3, a local radio station, has a morning show team that has 2 members who are diehard Yankees fans and they have decided to look for a new team to throw their hearts into. Chrissy and Brian are still Yankee’s fans, but, they are not giving them their hearts any more. They are looking for a new team to love and support. Ben and James listen to their show every morning on the way to school. They are asking people to email suggesting local teams for them to love. I have sent them an email telling them about “The Green Drakkoman” team of NCYBA. I explained the story of Ben and the Green Drakkoman and told them the boys are a great team. I am not sure if they need to be bombarded with emails, but, here is the email address for the show – morningrush@fly92.com. Chrissy actually contributed a recipe to the Recipes of Love Cookbook the 3rd grade put together for Ben.

5/4/2009

    I will give you all the big news first and then talk about this past weekend. We spoke with the doctors today and Ben will be going in for his surgery next Monday - 1 week from today. He will be going in on 5/11 to have the tumors removed from his left side. On the last scans he had 5 tumors on that side. If you recall the surgery on his right side resulted in the removal of 11 tumors. We are all really glad to get the tumors out of him. Technically on Monday night he will be NED once again. The chemotherapy cocktail he has been on seems to be effective on the tumors. Ben is scared, but, amazingly brave as always. He will be having chemotherapy on Thursday as he normally would and we anticipate that he will receive his scheduled chemotherapy on the Thursday after the surgery. I will post more details as we get closer.
    
   On Saturday the Green Drakkoman NCYBA baseball team had a game. The boys were all excited and we were waiting to take the field and dugout as the previous game ended. As the team went out to the outfield one of the adults from the previous game asked me about the Green Drakkoman name. Ben was standing right there and he hesitated to hear what I had to say. I told the gentleman that, "My son Benjamin had been diagnosed with a rare cancer called osteosarcoma and the Green Drakkoman is a super hero that he created. The Green Drakkoman is helping him defeat the cancer along with a strong team. A group of friends and family decided to sponsor the team and name it after the Green Drakkoman." Ben smiled, said, "I'm Ben and I created the Green Drakkoman." and ran out into the outfield to warm up. The man followed me into the dugout. As I was hanging the boys batting bags and bats in the dugout the man quietly asked, "Is it terminal?" Trust me that is not the smartest question to ask a man about his son when he has a bat in his hand. I have no idea how long I stood there looking at the bats formulating my answer. I know he didn't mean anything bad. In fact he genuinely cared. I could see in his face that he was trying to imagine himself in my shoes. I had seen the way he looked at Ben and it was a look of love and caring, not, gawking. I also know that question well becuase in my heart I have asked the question many times. My first thought was how to fit in to my response that everyone was terminal. Instead I turned to him and said, "We don't think so. He is responding well to the chemotherapy and will be having surgery soon to remove the tumors in his lungs." I could see him relax a little as he thanked me, said he would pray for Ben and left the dugout and field. Words are amazing things and I am still realizing just how much power they have. I know many of you have mentioned that using twitter is nice, but, you like the longer posts. I do too. 
                
   On Sunday Ben and I had breakfast at the Circle Diner. I love that place. When we walked in half the staff greeted Ben by name. A group of the employees had been asking me about the golf tournament and they are excited to put together a foursome. The Circle Diner also donated some gift certificates to the NFL fundraiser this Friday. Ben and I were in the car. Actually he was getting into the car and I was standing next to the car. He mentioned the web site. He said, "We have to put more Green Drakkoman stories up on the site." I agreed and said, "We do need to put more stories up. You need to write some more of them too." He then looked up at me, straight into my eyes and said, "You need to keep the site going you know. No matter what happens you need to make sure that the site keeps updated. Even if the cancer comes back again." I promised him that I would always keep it going until he could take it over. He also talked about the Green Drakkoman Foundation during breakfast. He wants to make sure we are helping other people and kids with cancer.

4/26/2009

   Today was pretty amazing and i think it was really tough on Ben. It was incredibly warm today and we are just not used to it yet. I am not sure how hot it really was, but, I am pretty sure it was well into the 80s and there were almost no clouds in the sky. If it was in the middle of the summer it would have been perfect amd we all would have thought it was a cool day. The day started out well and we enjoyed the opening ceremonies. We went back home for a while and returned to the ballpark facility around 1:30 for pictures at 2. I could tell the sun and heat was really sapping Ben's energy and unfortunately we were far from any air conditioning and there wasn't any shade where we were waiting for the pictures. Parking was tough and it took a long time for the team to arrive. We ended up shooting the pictures around 2:15 and finishing by 2:30ish. At one point I put Ben into one of the dugouts on a nearby ballfield to get him out of the sun. After the pics I bought him a hot dog and both of them drinks at the concession stand as we headed to the car.

           

   Once back home everyone rested and I cranked up the air conditioning. We arrived back at the ballfields around 5:30 for the 6 o'clock game. Stacey had waited back at the house for Cousin Betty to return. They arrived at the fields around 6:30. Unfortunately, they missed Ben's at bat. We were the home team so the other team batted first. The first inning was coach pitch and the opposing team's coach pitched beautifully gentle throws that their team connected with repeatedly. They ended up scoring 5 runs in that inning and batted through 9 of their hitters. While they were up the heat was getting to Ben. I sent him to our car to cool off with his 2nd grade teacher who was their to cheer on Ben and several of her other former students. The AC in the car helped rejuvenate him. She brought him to the dugout in time for his at bat. I walked with him towards the batting box. As we were walking he had his batting gloves in his hands and started to tuck his bat under his right arm so he could put them on. I saw as he winced in pain. I asked, "Are you all right?" He looked up at me and said, "Yes, I just smacked the place were my incision is under my arm. It realy hurt." The incision he is talking about is 6-8" long and is between his ribs. They had to spread his ribs to get into the lung cavitiy. He also has a smaller incision adjacent to it where the chest tube was in. He was released from the hospital less than 2 weeks ago. I asked him if he wanted to sit back down and I would have him bat later. He said, "No, I am here to bat and to lead my team." I couldn't bear to pitch to him so I asked one of the parents to pitch. He is our pitching coach. I watch as Ben stepped into the batting box and raised his bat. Earlier he and I had practiced at home and he was swinging with great strength. I saw that he was no raising the bat as high as he had earlier. The first pitch came and his swing was good, but, slower than earlier. He was being cautious and I new why. I reminded him how to swing without hurting his arm and side. I have taught him to let go with his right arm if he feels pain or his muscles tighten. It has worked well for him. On the next pitch the ball hit him in the leg. I heard the crowd gasp and poor Chris wanted to crawl under a rock. I joked loudly with him and the crowd by shouting, "Hey, your only supposed to hit your own kid." Ben bounced around a little bit, but, returned to the batting box. His swing at the next ball was a little better, but, it was strike 2. On the next pitch he tipped the ball and it hit the dirt hard just behind the plate. He was starting to get his swing back a little. As Chris pitched the next ball I think I stopped breathing. I could litterally feel the crowd behind me wishing for the bat to connect solidly with the ball. I even had one of those quick movie flash forwards happen in my head as started to swing. You know the one where the kid swings, hits the ball, and it goes to the fence. Unfortunately it was a swing and a miss - strike three. It didn't even have a nice "thunk" into the catchers glove. Ben was shaken and visibly disappointed as I walked him back to the dugout. I told him I was proud of him. I cannot imagine myself coming even close to the heart and courage he demonstrated and I don't know many adults who could have been so graceful and brave. He just had chemotherapy on Thursday and it was the one that is really tough.

   

  At 6:45 Stacey took Ben and James over to the ballfield that the high school team was playing on to get them ready to throw out the first pitch. I stayed with The Green Drakkoman as put a few of the kids on base. Alas, we did not score. If any one is really great at pitching to kids and having them hit let me know. The high school team had signed balls for both boys and Ben did a wonderful job going out on the field and throwing the ball. The young men on the team took the time to talk with both of them and wish Ben well. Several of the boys already have scholarships to good baseball colleges and it is our understanding that at least one of them has been scouted by major league teams. The boys were very proud of the signed balls that we now have esconced in plastic cases right next to their David Ortiz baseballs. Ben did not get ack up to bat in the game. James did get up to bat. He did a great job. Last year when he came up to bat he would slowly swing at the first 3 pitches no matter how wild and stike out. Tonight he waited and only took swings at pitches that actually looked good. He tipped one foul and ended up with a full count - 3 balls, 2 strikes.The next pitch was not really good and I could see that he wanted to swing. In fact his bat started to move. He returned it to his shoulder and the pitch was called a ball. The umpire did a great job and James earned his walk. The beautiful part about James is that he was just as thrilled to get to the base by a walk as he would be if he had hit the ball or it had hit him. He just likes to get on base. I was so impressed by the maturity that he showed and I made sure he knew how proud we were of him. The Green Drakkoman ended up losing their first game. The Green Drakkoman played their best and never, never gave up. These kids are amazing. We lost by the runs that were scored when their coach was pitching. The kids played multiple positions and had a great time. I watched carefully and we will practice this week and work on the things that we need to work on. Tomorrow is another day and the kids were happy at the end of the game.

             

   Everyone here is excited about going to see the Red Sox play the Yankees. Ben fell asleep almost as soon as his head hit his pillow. We will be bringing the wheelchair we have with us in case we need it. He was tired tonight, but, in a healthy way.

            

  We received a copy of the cookbook that the 3rd graders put together to raise money for the Ben Fund. As Stacey was driving us home I started thumbing through it. I looked at many of the recipes and started reading through the ads and dedications in the back of it. Stacey asked if I was alright as I held back tears. I have never had a cookbook make me cry before. The love that is in that book shows through beautifully. There are recipes in there that are family "secret" recipes and "secret" or personal recipes from professional Chefs from as far away as Rome, Italy. I love the quote that the school librarians from Blue Creek put in their ad - "Outside of a dog, a book is man's best friend. Inside of a dog, it's too dark to read." The cookbook is titled "Recipes of Love" and it is true to its' title. In the dedication of the cookbook it mentions that the cookbook is partially dedicated to the Green Drakkoman - "With the support of family, friends, and the community, the Green Drakkoman will continue to inspire each and every person to live each day to the fullest." We are members of an osteosarcoma international support email list and just before I started writing this I read an email from one of the leading osteosarcoma experts. In that email he talked about one of his most important prescriptions for his patients - "Live life with wild abandon and enjoy the beauty." Today and this weekend seem to be hammering home the message.

4/24/2009

 Ben is feeling well today. He is a little tired, but, everything seems to be functioning well. I will be giving him a shot later tonight that will boost his white blood count and immune system. We will be keeping a close eye on him tomorrow. It is going to be a very busy day for us. The whole weekend is focused on baseball. We need to make sure the camera batteries are charged and we have enough room for digital pictures. Saturday will be focused on the kids playing baseball. It is opening day for North Colonie Youth Baseball and the boys are excited. In the morning they will have opening day festivities and then in the afternoon the boys will have their Team and individual photos taken. At 6 PM The Green Drakkoman will take the field for their first game. The entire team is very excited and everyone is happy to be playing together. I think they have already bonded as a team I only have to make sure it continues. At 7 PM Ben and James will be throwing out the first pitch at the High School's first (I think) baseball game of the season under the lights. Our game will probably still be going on so Stacey and Cousin Betty will make sure they get to the field the High School is playing on. They are both in the same baseball field complex so it isn't a really big deal. On Sunday we will be heading to Boston to see the Red Sox play the Yankees at Fenway. We will be sitting in section 19, behind home plate. California Cousin Betty reached out to someone she knows who had a connection with someone at the Red Sox. She told him that Ben was feeling well and would probably be able to go and asked if he could help work a miracle and get the boys to one of the games this weekend. She knows that not only does Ben loves the Red Sox and James loves the Yankees. James is a rare Yankee fan because he isn't a Boston hater. I hadn't really thought about it until now, but, it may be an interesting night after the game. We are not sure exactly how the tickets became available. We do know that Betty has made this possible and we are incredibly grateful. I know that no matter what this weekend will be one that will be remembered.
        
  There are also a couple of other groups of people who continue to give our family incredible support. The North Colonie school district community has wrapped Ben up in their arms and continue do everything they can to help him beat osteosarcoma and to support us in this battle. The High School baseball team having the boys throw out the first pitch tomorrow is just 1 small example. The track team is working out the details of having a running event. An elementary school in the district has adopted Ben and they held a day of giving back to the community dedicated to him. Not only was it a magical day they even had a professional magic show. The 3rd grade classes from our elementary school has put together a cookbook and have been taking orders for some time now. They are having a "Cookbook Party" on May 8th at the school. 3 NFL players will be there signing autographs and auctioning memorabilia. A local pizzeria will have pizza there for people to pick up to take home. They have pre-sold over 600 cookbooks and have ordered several hundred additional books to sell. My understanding is that they have been getting a great response from people who didn't preorder and they are sure they will sell all of them. I think they are bringing some of them that have arrived to the baseball game tomorrow.
         
   Another amazing group of folks that keep turning up every time I turn around are old friends from my grade school and high school days. At every fundraiser we have had I come across people I haven't seen in almost 30 years. It amazes me that the number could be so great. Are we really that old? We all seem to look like it should only be 10. I was in math classes with one of the NFL players that will be there on the 8th - Tim Sherwin. Dave and Sarah Donlon have stepped up to help my family twice. The first time was when Stacey and I had a fine craft store in Watervliet and someone tried to burn down the building. The woke up to see weird flickering orange light coming into their bedroom and called the fire dept. There was only very minor smoke damage to our store. The fire investigator told us that if the fireman had arrived 5 minutes later we probably would have lost everything. Now they have come to help us again. They formed the Elise Donlan Foundation in memory of their beautiful little daughter who was accepted into heaven in angels arms after a lengthy battle with a rare disease. They have contributed to the Ben fund and now the Elise Donlon foundation is dedicating their 7th Golfing "Fore" a Cure golf tournament to Ben. On Friday June 5th at the Fairways of Halfmoon the tournament will take place. Ben and James both get a kick out of the fact that Dave and I were in Cub Scouts together and his Mom was my favorite Den mother. Now she would be a Den leader. I sold my golf clubs last year at our garage sale so I will have to get new clubs. Stacey laughs because I have been trying to justify new golf clubs since the boys were born.
                   
   We find ourselves in a very scary place. It may be scary, but, we are never alone. We have an army behind us that lifts us and carries us onward when we think we can go no further. After the last relapse Ben asked me , "Why does it keep coming back? Can't we make it go away for good?" I told him that I didn't know why it kept coming back. I also told him that what we have to do is keep removing it and try different chemotherapy and other treatments until we find the right ones. I told him that we would never stop. I also pointed out that we had a whole army of people that were helping us. I watched him contemplate my words and then he quietly acknowledged that we would keep going until the battle was over. I can tell you that when he goes to the fundraisers and events it gives him such a great lift. The fact that the High School is having him participate tomorrow has lifted his spirits greatly. In fact we usually don't tell him about things like this until we know that he can actually participate. He gets upset when he misses something. He was very upset last weekend that he couldn't go to the Siena Women's Water Polo games. The one thing that gave him solace was that they had come to visit him in the hospital. Now The Green Drakkoman baseball team and the events of this weekend are carrying him through this latest round of chemo. We will be bringing a wheelchair with us to Boston, just in case.


4/6/2009

  We arrived at the hospital and he went into the pre-op area to get ready. He was very comfortable as we saw familiar faces in the preparation area. The nurse who did his interview was very kind and jovial. After we discussed the surgery with her and Ben answered her questions she brought him a hospital gown, robe and slipper socks. He and I went into the bathroom to get him changed. He put on the gown and robe as I collected his clothes in a plastic bag. He asked me to help him with the slipper socks and I agreed. As I bent down he balanced with his hand on my head. I held out the slipper sock and told him to lift his foot higher. Neither of us was really paying attention to where his knee was. He lifted it quickly. Bam! His knee slammed into my face and right eye like we were in a professional wrestling match. It literally stood me up. I saw stars and staggered back a little. The first thought I had as Ben called out, ”Are you okay? Daddy are you okay?” was that at least I was already at the hospital. The world stopped spinning and Ben and I ended up laughing as we finished putting on his slipper socks. As we walked back to the seating area and Stacey I took off my glasses to adjust them. I think they saved me from a black eye. As I fixed them I looked at the right lens and there was a perfect print of my closed eye. You could even count my eyelashes.

    

  Ben decided not to take the cocktail that would make him loopy before going into the operating room. He was very relaxed and comfortable and had Caymus, his first stuffed animal, with him. He knew that once he was on the operating table they would put a mask over his face and he would go to sleep. He decided his Mom would go in with him to the OR. I said my “I love you”s, gave him a kiss and went out to the waiting room. Miss Kathy had already found us a place to wait. While I was sitting with her the rest of our entourage showed up. Stacey came out and told us what had happened after I left. The OR nurse came out to get him. The 3 of them walked down the long corridor to the operating room. They walked past several ORs and other people on gurneys. Ben was holding onto his mothers hand and gripped it tightly. She could see that he was a little scared as he turned to her and said, “Caymus usually likes to ride instead of walk like this.” She encouraged him and the nurse told him how brave he was. He walked into the OR and climbed onto the operating table. As they positioned him the anesthetist placed the mask over his face. Stacey gave him a kiss on his forehead and told him she loved him and that we would all be waiting for him. He nodded bravely and then closed his eyes.

             

  We anticipated that the surgery would only take 2-5 hours. The time clicked by and the waiting room attendant came over to tell us that after they positioned him correctly the actual first incision took place around 2 pm. We occupied ourselves as best we could and asked for updates several times. We watched as there were fewer and fewer people waiting for loved ones to come out of surgery. We heard at 6:30 pm that they had started to close. The surgeon came out to talk to us around 7:30 pm. He explained the whole surgery to us and told us that they would be sending up to PICU soon. The surgery took a great deal of time because hi lings had a great deal of scar tissue and adhesions to his chest wall from his previous surgeries. He also told us that he was able to be very thorough when he examined/palpated Ben’s lungs. They removed 11 tumors from his right lung. They took out 5 tumors with a wedge resection that removed about 1 ½ inches of lung tissue. We have subsequently found out that all 11 nodules were osteosarcoma tumors. Ben finally arrived at the PICU around 9 pm. Stacey and I watched as the nurses lovingly positioned him in the room.

       

   The anesthesiologist talked to us and told us that they wanted to keep him heavily sedated for most of the night. He was on a respirator that was breathing for him. His eyes were taped closed he looked a little pale and puffy. They told us that he had received a great deal of fluids and a unit of blood during the surgery because he lost a lot of blood. He looked comfortable as they took the tape off of his eyes. I went out to the hall and one by one DoeDoe(Stacey’s mom), Miss Kathy and Aunt Janine came in to give him a kiss and say goodnight.

4/5/2009

Ben and I went to breakfast early this morning at the Circle Diner. Today we decided to go before church because there was a baseball clinic at the local high school for players in the baseball league. As usual breakfast was great and he told me how much he enjoys our Sunday morning breakfasts. While we were at breakfast he did a magic trick for our waitress. He emptied a sugar packet into my coffee and then crumpled it up and pushed it into his closed fist. A filled packet fell out onto the table and he showed her that his fist was empty. He pulled it off. After church I was talking with someone and she told me that thinking about Ben had helped her be there for someone else. The person was contemplating participating in a clinical trial for a drug to help with his cancer. He asked her what she thought he should do. She thought of Ben and everything he has gone through and immediately replied, “You should do it. If not for you for the people it may help later.” She told me that Ben had opened her eyes to things she hadn’t really thought about before. It always makes us feel good when people tell us how Ben and James have affected their lives in positive ways.

Ben sat on the stairs today and told us that he is afraid. We told him we understood and asked him if it was just nervousness or was it real fear. He said real fear, but, that he was under control and ready for the surgery. The fear is not controlling him. He is in charge. I have heard police officers, FBI agents, pilots, soldiers and a Navy SEAL speak of fear as they prepared to go into a life threatening situation and say that if there was no fear they would be concerned. The key is to be aware of it, control it and know that you are prepared. Ben is in a place where he is doing all 3 of those things. We have been playing games all day. At one point he said, “I won’t be able to play the Wii for a while so let’s play.” A few of our young neighbors (Cameron and Elizabeth) stopped by with a beautiful card they made for him with words and pictures that made him think of him. Aiva brought him an amazing rock she had painted. In addition to a smiling face the rock had the words strong - caring – brave – helpful – friend – Love.

Ben will be arriving at the hospital by 9:30 tomorrow morning and his surgery is scheduled to start at 10:30. Based on our previous experience the operation should take a couple of hours. We will provide updates on Twitter throughout the day and I will provide a larger update some time after we are settled in the PICU. Thank you all for your thoughts and prayers.

4/4/2009

 This morning Ben came into our room and woke me up. After we exchanged good mornings Ben said, “Two days until my surgery.” His tone was almost that of someone saying it was two days until a holiday or the start of a school vacation. He has obviously resolved most of his fears or accepted them. He is playing with Uncle Drew right now on the Wii. I went to the baseball fields this morning for field work and a mandatory coaches meeting. Before I left Ben asked me what the General Manager of a baseball team does. I explained that he was more of a team owner. He is really psyched to be a team sponsor. I think The Green Drakkoman are going to have a wonderful season. I still have to get the league the design for the outfield sign.

Last night Stacey and I were able to go out to show at a local theater – Proctor’s. It was a great show. Colin Mochrie and Brad Sherwood performed an improvisational comedy show. We have not laughed that hard in a long time. We really needed to be there. Even though the skies are gray today everything was a little brighter this morning. It was also nice because we ran into a few of our friends there as well. I reread my last post and I think it was the first time I really sounded negative. It wasn’t my intent I just meant to say that sometimes the situation someone is in can really stink. We remain steadfast in focusing on the positive and moving forward. I found myself wondering as we were driving home if Colin and Brad ever think about the true value of their show to specific members of the audience. Laughter is the best medicine and last night Stacey and I received the correct dosage. I wonder if they ever think about the true impact their show can have on any given night. It is somehow easier for me to focus on the positive today.

Ben’s surgery is scheduled for Monday morning at 10:30. We need to get him there by 9:30. We know that we don’t even have to ask because you are all already praying for him and giving us such wonderful support. I will update using Twitter every time we get some news on Monday. If you aren’t following GreenDrakkoman on twitter you will see the latest update on this web site in the green twitter box above these posts.

4/1/2009

 Monday night the boys showed Cousin Betty and their Mom several magic tricks we have been working on. Of course Daddy ends up being their lovely assistant. It was really fun to watch them try to get everything to work right. Very few of the tricks actually ended up working as planned, but, the entertainment value was very high. Their best trick is the bag that makes thing disappear. They both performed this trick. Ben used a Lego SpongeBob figurine that he made disappear and then return. James on the other hand asks for a dollar bill from the audience and upn making it disappear said, "Thank you very much for attending the show." and ran away without returning the money. It was very cute.

After the show I was talking with Ben while we watched "The Masters of Magic" on TV. I told them it was time to go to bed after the next trick. Ben replied, "But Daddy I can't sleep at night." I asked him why and he told me he was worried about the surgery. He is afraid it is going to hurt. I have no idea what it feels like so I could only respond, "Ben you've had the surgery before and this time they are only going to be doing 1 side at a time." "Yeah, but, I am afraid it is going to hurt more this time." "What part do you think is going to hurt?" He just pointed at his penis. "I know last time the catheter really bothered you. This time we know what to look out for and we won't let them take it out too soon." If you remember after the last surgery he had to be re-catheterized. He went on to say that the chest tubes really creeped him out. I explained that we would do everything we could to minimize pain and that he had every reason to be nervous and a little afraid. He is also a little upset that because of the 2 surgeries he is going to have that he won't be able to play baseball. He wants me to make him a Green Drakkoman mascot costume to wear at the games. I'll have to see what I can do. I have a couple of ideas. After we talked for a bit his mood seemed to change and when he went to bed he fell asleep pretty quickly.

I wrote the previous paragraphs yesterday and was going to post them when I returned home after work. It seems that my talking with Ben really didn’t quell his fears. I found out that he had talked with his teacher about it during the school day. I do not know the details because I didn’t talk to her. Stacey told me about it. I am sure she did a great job communicating with him in a very supportive fashion. She is a really great teacher and has been wonderful throughout the year.

After I managed to get the boys in bed I went downstairs to watch a little TV before going to bed myself. California Cousin Betty went into the boys’ room to say good night to them. She gave them each a little kiss and Ben told her he couldn’t sleep. She ended up crawling into bed with him as he told her that he was really scared of the surgery on Monday. She told him that she understood and that it was ok. She also reinforced the need for the surgery and that we all felt he was in good hands with the doctor. He agreed and on an intellectual level he obviously knows the surgery is necessary. Our little Ben is growing up and the blind trust he has had up until now his eroded. He trusts, but, is no longer blind. I cannot imagine what it would be like to be facing a 3rd and 4th surgery at the age of 8 ½ knowing that the surgery was being done to save my life. Little kids should be worrying about whether or not they are going to hit a ball. We can’t take his fears away and he is so brave. This just sucks.

3/29/2009

   Today has been a great day. Ben and I went to church and afterwards we followed our tradition and had breakfast at the Circle Diner. He loves it when they recognize him as a regular. He took California Cousin Betty there earlier in the week and one of the waitstaff came over to them and said, "Hey, today isn't Sunday. We usually don't get to see you until the weekend." He thought it was really cool that she ended up being our waitress today. He ate 2 eggs over medium, 2 big pancakes, 2 slices of toast, and 2 big glasses of orange juice. It was nice to see him eat so much.
      
   When Ben was first diagnosed I searched the internet and every source I could find for information on osteosarcoma and potential treatments. I could find very little and what I could find seemed to be at least a year old. I did find a couple of drugs that seemed to show promise, but, the research and trials for them had been discontinued because of a lack of funding and interest on the part of the government and pharmaceutical companies. There were also a couple of items that had entered trials, but, it looked like it would be a couple of years before there would be any real information on them. It was very depressing to see so little being done and that the information and treatment for osteosarcoma was stale. We hung our hope on the fact that the treatment Ben was receiving had been in place and had a reasonably good survival rate. The biggest indicator of survival was how early the diagnosis was made. We were hopeful that because of our miraculous discovery of his primary tumor that he would breeze through it. All indications were positive until the day we found out it had metasticized to his lungs. It was unexpected and surprising that it would happen so fast. He is on his 3rd relapse and will be having thoracotomy surgery on Monday April 6th to remove the tumors from his lungs on one side. The CT scans show 5 tumors on each side. He has been on 3 drugs that have seemed to stopped the growth of additional tumors. On Thursday we added another drug that has been showing progress in recent Phase III trials. 2 of the Drugs he is receiving are brand new. One of the L-MTP-PE has been approved for treatment of osteosarcoma in EUrope and the FDA may be approving it here. It is the first new drug developed for treating osteosarcoma in 20 years. The other drug that he started on Thursday is Zoledronic Acid and the studies that have shown good results were just published in March. That is right March of 2009. I checked one of my sources for osteosarcoma research this morning and there were 49 articles on Phase II and Phase III trials. I could only find 2 in September of 2006. I am bringing this to your attention because I have had a few people ask how we stay so positive all the time. My first reason is that we aren't positive all the time and have had to search for the positive to focus on at times. My second reason is that Ben continues to give us inspiration and examples of what is really important in life and refuses to let osteosarcoma prevent him from being the child he chooses to be. The 3rd reason that we are able to be positive is that we know that there is research being done. There are doctors and researchers working diligently to find solutions. A great deal of the research is being done in Europe and Asia in addition to the US. I have even found myself working at a company that is doing research on a potential treatment that has entered into Phase I trials.

3/28/2009

  This morning Ben and I had an interesting conversation. He was in a very serious mood so I asked him what was going on. We sat face to face he in a chair and I on the edge of the bed. He said, "I am the longest living person with cancer." I was slightly taken aback and asked him what he meant and he replied, "I have been living longer with cancer than anyone else." My first thought was of the young man we met on our first visit to the hospital who had been in treatment for a little over 9 years. I thought quickly and said, "Ben it does seem like you have had it for a long time, but, we know people who have had it just as long and even longer and they are fine and healthy now." He agreed and then I added, "We are working to get it out of you. You will be having the operations soon to remove it and then you will be cancer free again. We are using some new drugs to keep the cancer from coming back." He said, "I know, but, it keeps coming back." I looked him straight in the eyes and said, "Ben, we have great doctors and whole bunch of people helping us. We just have to find the right drug or treatment to keep it from coming back. We will keep trying until we find it. We won't give up, just like the Green Drakkoman." He turned to go play on the computer as he smiled and said, "I know Daddy. I love you." I just kissed him on the top of his little bald head and said, "I love you too Ben." He seemed to have moved on to another activity. I hope I handled it correctly. I have been asking myself that throughout the day.

3/26/2009

  Ben did very well with chemo today and he received platelets as well. We delayed bringing him to the hospital. Today was a very nice day. One of the elementary schools in our school district decided to adopt Ben. They have an annual "Give Back Day" where they try to teach the kids about giving back to their community and others. As part of that celebration the kids decided to help their friend Ben. Ben knows quite a few of the kids even though he doesn't go to the school. They had an assembly this morning and had a magic show. Ben drew the winning ticket for the big raffle. When we arrived they called down several of the kids who knew him to sit with him. He had his own posse made of kids from church, baseball and other places. While I was sitting there taking it all in a mom of one of the kids came up and quickly crouched next to me. I used to work with her. She reached out and I thought she was going to shake my hand. When she took my hand I could feel that she was slipping money into my hands. I thanked her and she disappeared into the gym. We had greeted each other as she dropped of her child and we were coming in. She probably had to rush off to work or other obligations. I quietly slipped the money into my pocket and held back tears. Stacey leaned over and quietly asked me if I was ok. I had no idea how much she handed me until after we left and I reached into my pocket. When we were at the school they presented Ben with an envelope containing a check for the money that all of the children had raised to help pay for Ben's medical care. I am not sure how Stacey and I held back the tears as the kids cheered for Ben, said hello and waved as the assembly broke up. The kids who were sitting with him were disappointed that he couldn't stay all day with them as they did the planned activities. When we told a few of the adults that he was going straight from this assembly to the hospital to get chemotherapy and then most likely a blood infusion you could see the look of concern and the reality of Ben's situation hit them. Even though he is bald it is hard to believe he is sick. I absolutely love this communtiy and the people here. If it takes a village to save a child this village is doing everything they can to save Ben and it really is the children who are leading the charge to help one of their own.

3/21/2009

Ben has been doing pretty well since his chemotherapy on Thursday. He is still on a schedule of chemotherapy every week on Thursdays. On any given Thursday he is receiving between 1 and 3 different drugs. We have talked with Dr Pearce about adding a 4th drug to the protocol. We have also been talking with Dr Pearce about removing the metastatic osteosarcoma tumors that are in Ben’s lungs. We also met with the surgeon who will be performing the surgeries. He will do each lung separately instead of both at once. We think it will be better for Ben to do it in 2 surgeries. We decided not to do the Cyber Knife yet because everything I can find states that a good surgeon can feel tumors that don’t show up in the images and we want to make sure we get everything. If we get to a point where Ben can’t handle another surgery or I find different studies we will use the Cyber Knife.

Tomorrow is the St Baldrick’s benefit for Albany Medical Center at the Pump Station in Albany. It starts around 1 and it will be a great time. Stacey, California Cousin Betty and the boys will be heading down around 2 if Ben is still feeling well. The folks who are getting their heads shaved in Ben’s honor are scheduled to sit in the shave chairs around 3. Unfortunately I will not be able to be there this year. North Colonie Youth Baseball is having tryouts tomorrow from Noon until 4 pm and as one of the coaches I have to be there. I’ll have to shave my own head or maybe I’ll let the boys do it.

The other day we received an email from North Colonie Youth Baseball asking for sponsors for a few more teams. It costs $400 to sponsor a team for the year. I jokingly called to Stacey in the other room and asked her if she wanted to sponsor a team. A couple of minutes later Ben came over to me and said, “I have $300 in my bank account. I’d like to sponsor a team. They need more sponsors. How much does it cost?” I said, “Oh honey that’s a nice idea, but, it is $400.” California Cousin Betty overheard Ben and shouted, “I’ll throw in $200.” I responded to the email and offered to sponsor a team. Gramma Mac caught wind of it and said she would send money to keep Ben from using his savings. I have a feeling a few other relatives will be chipping in too. Ben is probably one of the first little league players to sponsor his own team. The team is going to be called “The Green Drakkoman” and we have asked that the team shirts be green. I have to get them the artwork for the sign. NCYBA has been very good to our family and this seems like a great opportunity to pay them back. Ben really wanted to do it so how could we say no.

3/9/2009

   All I can say is what a weekend. The website was silent with updates and I couldn’t send tweets(twitter updates) because there was no connectivity at Double H. We were in one of the newer cabins along with 3 other families. All together I think there were 9 families there this weekend and whole host of volunteers. Each family had their own volunteer councilor assigned to them that was there to help out with whatever they could. Our volunteer was an amazing young woman named Kaitlyn. She came up for the weekend from NYC. She is an incredibly busy young woman who is in college, acting in plays and working besides. She found the time in her very busy life to come to Double H. She took James under her wing and really focused a great deal of attention on him. She spent hours playing with him in the snow and building snowmen, snow penguins and having snowball battles and throwing contests. She and several other councilors went with James and other siblings on a snowshoe hike yesterday and James loved it. James didn’t really want to participate in the snowboarding so it was good for him to find other things he could do.

           
   Ben on the other hand hit the slopes. He threw himself into snowboarding with a vengeance. On Saturday morning he went down the mountain 3 times in 2 hours. During the afternoon session he nearly doubled that. On Sunday his instructor lost count of how many times he made it down the mountain. He would go down a couple of times and then rest at the bottom for a little bit. It was amazing to see him at work and marvel at the fact that on Tuesday he was too weak to walk into the hospital for his transfusion and needed a wheelchair. I think loading up on red blood and platelets on Friday helped some, but, a good portion of it is him pushing himself to have a great time. He genuinely wants to be able to call himself a snowboarder. His determination to snowboard and the boys wanting me to participate as well caused me to decide to take it up as well. On Saturday afternoon I was fitted for a snowboard, boots and helmet. Ben wanted to be my instructor, but, we found someone more qualified; although Ben continued to give me pointers between his own runs. I must admit I was watching him and trying to do the things I saw him doing. My instructor would work with me for a little bit and then give me some things to practice and go work with somebody else that could make it up the chair lift. Pushing myself with one foot attached to the snowboard up the small practice hill at the bottom and then sliding back down was really hard work. I think he thought I was going to have a heart attack at one point. Ultimately, I managed to make it up the chairlift and down the mountain once by the end of Saturday. Yesterday Ben challenged me to a race by the end of the day and I worked really hard to be able to do it. He ended up winning. He has progressed so much this year. The folks who have taught him tell me he inspires them. After the race I went up to the woman who is in charge of the Winter Program itself and all I could say was, “Thank you.” There was a large group of people watching the race and cheering Ben and me on. That is the amazing thing about this program. Everyone celebrates each other and spontaneous cheers and applause are common. Everywhere you turn there is something wonderful happening; a young woman with cerebral palsy skiing down the mountain completely on her own, a young man who is confined to a wheelchair guiding himself completely autonomously down the ski slope in a chair on skis and poles with little skis on the tips in his hands, a little boy with autism who is normally non-communicative laughing and shouting “me ski, big mountain” as he arrives at the bottom of the mountain between 2 instructors. Double H overwhelms me with its successes. The program keeps growing to fill a need that grows faster than they can catch up. Their biggest problem with the winter program is finding qualified instructors. They provide all of the training for people who are experienced skiers and snowboarders. Ben and I are making plans to learn how to snowboard so we can become instructors at Double H. By the way, I am very sore today and I have a totally new found respect for both of my sons.

       
   On Friday we received the results of Ben’s latest CT scans. There has been no sign of progression. In other words he still has 10 tumors in his lungs, but, they have not increased in size or number. We are continuing the chemotherapy and still discussing and seeking out options for his next treatments while we continue to monitor the status of his disease.

3/6/2009

  The other night Stacey was cuddling with Ben while he was falling asleep. It is normal for conversation to take place during this quite time. Ben asked his mother, “Did God let me get cancer?” Of all of the people I have met in my life Ben has had one of the simplest and strongest faiths in the existence of God. I remember a conversation he once had with David, the minister of our church, about God. David listened as Ben explained to him that God was inside each of us and everywhere. Stacey replied, “God doesn’t let children get cancer. Sometimes it just happens and nobody knows why.” He told her that he didn’t want to have cancer anymore and that he didn’t want to die. She told him that she understood and that we are doing everything we can to get rid of the osteosarcoma. They talked some more and eventually he fell asleep.

  We had a conversation with James the next day and he outlined his plans for the future. He wants to becomes a scientist and live with Ben and his family. He doesn’t plan on getting married and having children. Ben is going to do that. He also told us that he and Ben were going to share the same bedroom forever. We asked him what he thought Ben’s wife would think about it and he replied, “Okay, she can sleep in our room, with Ben.” The amazing thing is that Ben seems to think most of James’ ideas for the future make sense. They have sound plans.

  Ben has asked if he could learn how to shoot a bow and arrow. He wants to try archery. He has also asked about fencing. He remembers that a couple of years ago a brother and sister team did a demonstration of fencing at our church. He and I had a great talk about how they fences in the Harry Potter movies using their wands and spells. The boys are looking forward to going to Double H for a family weekend tonight. I must admit I am too. We’ll be heading out right after their batting lesson. Everyone is excited about baseball this season. I will be coaching once again. I have to find a new assistant/book coach this year. Zach’s dad will be moving up to the next level with him. Zach is already 9 years old.

  The St Baldrick’s Day celebration at the Albany Pump House on 3/22 is coming along nicely. We already have some folks signed up under Ben’s Team – Green Drakkoman’s Warriors. It is nice to have an opportunity to help others in their struggle with childhood cancers and to contribute to the work at Albany Med. If you haven’t made plans come to the event and see grown men cry and women go bald. I will be shaving my head, but, that isn’t much of a sacrifice.

  On the 1st Friday of June at the Fairways of Halfmoon the Elise Donlon Foundation will be holding a golf tournament with Ben as the beneficiary. Elise was a beautiful little girl with a fantastic family that has continued helping others in her honor and memory. I have known her dad, Dave, since I was the boys’ age. Among other things we were in Cub Scouts together. They have been watching over our family throughout this journey and this tournament is a way for them to celebrate Elise and help Ben. If you are interested in participating send us an email and I will forward it onto them – greendrakkoman@hotmail.com and you will receive more details. 

3/3/2009

Ben is very tired today. He didn’t sleep much because he kept waking up thinking he had to pee and it’s really pressure on his bladder. I never quite know where to draw the line when I’m writing this blog. Bathroom talk coming – skip down 2 lines if you are squeamish. He is having troubles with his bowels. We can’t seem to get things right for him. He goes from being terribly constipated straight to diarrhea. Do not pass go. He is also a bit weak. When they went to the clinic today Stacey actually put him in a wheelchair to go through the halls of the hospital. His red blood count was fine, but, his platelets are low. He will be going to the hospital tomorrow to receive platelets. In the afternoon he will be having a CT scan and we will find out how the drugs are working. He is doing a pretty good job of eating. We are giving him whatever he will eat to keep his calories up. We are lucky because he eats eggs so we know we are getting good, easily digested proteins into him. We talked to Dr Pearce about his ups and downs lately and she said that we are really beating his body up with the drugs that we are giving him.

I think that is the one thing that has bothered me throughout the past 2 ½ years. The pain, being sick, losing his hair and all of the other crappy things he has endured have been inflicted by us. I know we are doing it to save his life, but, when the lights are off and I look at him sleeping there I think, “My God, what this kid has gone through. I don’t think I could do it.” Osteosarcoma has stolen so much from his life, our lives, and his friends lives; last year 1200 other kids joined the same fraternity. He is amazingly strong and he always has been. His strength and courage is what has carried and continues to carry us. I was flipping through the channels the other night and the military drama “The Unit” was on. I hesitated for a second and caught this amazing quote. It was like the TV was talking to me. Don’t worry I haven’t snapped yet. A young couple, he is a member of the Unit, is embracing and she says to him in a weak voice, “I’m not strong, what do you do when you’re not strong enough.” He replies in a loving monotone, “Pretend to be strong.”


3/1/2009

  We didn't make it to Double H this morning. Ben came in and woke me up really early. He said,"Daddy, I was thinking that we shouldn't go to Double H today." I asked why and he replied, "Because I thought it was family weekend and James can't go. It will make him feel bad." Earlier this week James asked Stacey if we loved him as much as Ben. We didn't think Ben had heard anything, but, maybe he did. I asked him how he was feeling. He said, "Okay." I told him that his intentions were very sweet and admirable and I suggested that we ask James what he thought. I knew that he and Stacey were planning on doing something together and just having Mommy and James time. He coyly said that he didn't think we needed to talk to him. I was starting to smell something fishy. I asked him again how he was feeling. I thought he was looking a little pale. He then admitted to not feeling well. We finally came up with the term after talking with one of the people at Double H. Ben feels really icky. He has spent most of the day so far just laying in bed. We think his counts are dropping. We have taken his temperature several times and it is fine. So we are having a restful day and using it to do some projects around the house. Stacey is going to bring him to the hospital in the morning to have his counts checked unless he spikes a fever between now and the morning.

           

  Last night Ben asked if he could have a Twitter account. I asked why and he said that he wanted to be able to communicate with President Obama. "I have some things I need to talk to him about." I pointed out that it was really unlikely that President Obama would have a Twitter account. I also told him that we did indeed have a Twitter account. I had created one for Greendrakkoman to make sure nobody else could. He was thrilled so we will start using it. For those of you who don't know what Twitter is you can check out http://www.twitter.com It is a free service that allows people to post brief messages and have them sent to their "followers." Followers are other people who have twitter accounts who have chosen to follow some one and they receive the messages either via email or text message to their phones. We can post updates from our mobile phone so we won't need to rely on an internet connection and the website fto get brief updates to all of you. I will also use it to send out a message when I update the web site. You can check out Ben's latest tweet without being a member by going to http://twitter.com/Greendrakkoman  If you want the Tweets(Twitter messages) to go to your phone or email you need to sign up for an account. I have it set so people have to be approved to become Ben's followers. By the way if you sign up for an account I would suggest making it private and not using your real name.

2/28/2009

   Last night the Cub Scout Pinewood Derby took place at the boys’ elementary school. The boys had designed really cool cars. Ben had a design with deep ridges on top. 2 years ago he did well with a car that had ridges. Last year I talked them into wedge shaped cars and they didn’t do as well as the year before. Ben brought back the ridges. James did a great deal of shaping on his car. It was fun teaching him how to use a Dremel tool. He did a great job of shaping it. It was very hard for me not to redo it or polish it off. My job in their pit crew is to spray paint them and put on the wheels. I also do the gluing of anything they want on the cars. We use super glue and I usually end up gluing something to my fingers. If I let them use the glue it would be disastrous. That’s right we let our kids use power tools that have sharp, hurty, pointy things spinning very rapidly and we won’t let them use glue. Each year they do more and more of it.

  Okay, enough fluff, it’s time to tell you about the racing. I will be putting together a little video after I get time to take it off the camera and editing it a little bit. Ben was in the second group to race. He was so excited. He was determined to go. Between the chemo on Thursday and the bowel trouble he had spent Friday in bed. He must have been saving up his energy. Every time he was racing he was so excited. Both of the boys get very excited if they actually win. In the first round Ben’s car won every race so he moved up the bracket. The crowd was wonderfully supportive of each; families cheering on their scouts, the scouts cheering for others. Except when Ben’s car was on the track. When the announcer would announce the names of the boys in the next race a huge group would start cheering when they heard Ben’s name. While the cars were being placed on the track the crowd was chanting, “Go Ben, Go Ben, Go Ben” and they usually didn’t stop chanting until he won. Ben’s golden car moved up through the brackets as he proceeded to win every race. He arrived at the finals and there was only one car between him and the big trophy. The silver car that his car had to race belonged to his twin brother James. James had also moved up through the brackets without the cheers. The cars were placed at the start. This time, I think out of respect for James, there wasn’t as much chanting for Ben. Brother against brother. I wasn’t sure if this was going to be a good situation or a bad one. I had watched James’ car and it was really fast. I had no idea what was about to happen. The race started and they both sped down the ramp picking up speed. They were side by side. As they headed towards the finish line Ben’s car took the lead. He won the big trophy. The whole place erupted with cheers. James was conflicted on the one hand he lost. On the other his brother had won and he had taken 2nd. Ben showed great sportsmanship and has given James his props. Mommy pointed out that Daddy had made mistake when he put on one of the wheels on James’ car. So don’t be surprised if James tells you it was my fault that he lost. I didn’t argue because I saw that it gave him a little ego boost. Who knows maybe that little flaw really was what cost him the race. The gold car took first place and the silver car took second. I can only guess what color James will want to use next year. Ben is already thinking about his car for next year and holding on to the championship. One of the dads turned to me just after the race and said “This couldn’t have been a better derby. You couldn’t script this.” I must say I agree. It was like a Hallmark made for TV movie.

              

                        

 

2/26/2009

On Tuesday I had my laptop open and was doing some homework. I had just closed the programs when James came walking by. He looked at the picture on my desktop and said quietly with a shocked expression, "Ben used to have hair?" I wasn't sure what he said so I asked him to repeat himself. When he said the words again I could hear the concern and almost sadness in his voice. "Ben used to have hair. I forgot what he looked like with hair. I can't remember him with hair." I showed him a couple of pictures and we talked about it. I let him know that sometimes we remember the moments, events and actions and who was there, but, most people forget the details about the people. I told him that was the reason I was always taking pictures of them. Because I always want to be reminded what they looked like when they were 8 and 6 and 5. After talking for a while (What's a while?) he was ok and we went upstairs and he told his Mom that he couldn't remember Ben with hair and she pointed out that Ben’s hair is growing back now. He may be seeing Ben with hair soon.

We are still talking with Dr Pearce about which would be better for Ben right now - the Cyber Knife or traditional thoracotomy. The big question for us is which will leave him with the most healthy lung tissue. I didn't sleep to well last night. I keep thinking about what we can do to make this all go away. I know that we are turning over every stone. I daydream about giving him my lungs, maybe even switching them. We know that we have been making the right decisions with the best information. Dr Pearce is continually amazed at the resources we come up with. I tell her I just put out the questions to the universe and the internet and see what comes back. Ben is tolerating the chemotherapy very well. The drugs have been wreaking a little havoc with his bowels. He seems to go from one extreme to the other. He has had a couple of accidents. He had one at school and what could have been a traumatizing and embarrassing event was handled brilliantly. It's a good thing the school nurse keeps a fresh supply of clothes in her office. He now carries extra clothes in his backpack.

The cookbook creation and sale seems to be going along beautifully. The kids have done a great job of getting recipes and the teachers have been proofing the recipes as fast as possible. The price is going to be between $10 and $15. I still don't know what the final price will be. If you want to reserve a copy the address is above. I am asked almost daily how people can order the cookbook.

On another note, we have been truly blessed by the outpouring of support and love we have been receiving. We have tried to teach the boys that it is important to give back and share with others. So we are participating in this years St. Baldrick's Day celebration at the Albany Pump House and Brewery on March 22. Ben was asked to be one of the honorees this year so he is featured on the web site and will be used in some of the promotional materials. St Baldrick's is an event where people get their heads shaved to show solidarity with the kids and young adults fighting pediatric cancers. They raise money by asking their friends, "How much money would you give to have my head shaved?" The money is then given to the St Baldrick's Foundation. Because the event is actually sponsored by the pediatric hem/onc group at Albany Med all of the money stays here. Of course I am already follicly challenged so it isn't much of a stretch for me to shave my head. Stacey and James are thinking about doing it. The boys are really funny every time she brings it up. They keep telling her she can't shave her head. It isn't shaped right. James has done it twice now. In the past he decided to shave his head on the day of the event. He even made it onto the front page of the Times Union one year. If you would like to donate here is the link - http://budurl.com/wv33 If you would like to participate in the event as a shavee, shaver or volunteer go to - http://budurl.com/3v8v In order to be a shaver you must be licensed with the state of NY. If you decide to be a shavee make sure you join Ben's Team by selecting Join a Team and the selecting his team - Green Drakkoman's Warriors. You can also join the Green Drakkoman's Warriors by donating at - http://budurl.com/rugk

On March 22nd go to the Albany Pump House and celebrate. It is truly a joyous celebration of solidarity that may leave you bald. By the way they aren't allowed to use razors so it's really just a very, very, very short haircut.

Ben is going snowboarding at Double H on Sunday and we all get to go up there next weekend for a family weekend.




2/20/2009

  There really isn't much to report about Ben right now. His chemotherapy is once a week on Thursday and it is done as an outpatient. It still means that the day is pretty much shot for Stacey and Ben. In fact either I have to come home for James or what is more likely is that one of our wonderful neighbors picks James up at the bus stop. In fact last week I didn't make it to the bus stop because of a late start from work and unexpected traffic. My cell phone rang and it was a relief to see their number on my phone and hear Jess's voice telling me, "We have your son at our house. He's fine, take your time." On Thursday this week James had the good fortune to have Uncle Rick come and stay with him. They had a great time together. I stopped in for lunch. Stacey took the boys to the movies a couple of time, but, overall it was a quiet week. I am not sure what we will be doing over the weekend.

                  

   The blood drive on Tuesday was a big success in our eyes. We asked and they had a great deal more donors than they normally do. I know of at least 3 people who donated for the very first time. I heard a story about one who was very scared about doing it. A couple of folks were really supportive and she, "Did it for Ben." and afterwards commented, "It wasn't so bad." Stacey managed to get Ben and James there for a little while and they thought it was really neat. There were teachers telling folks about the cookbook. I think the biggest hit was the Girl Scout's and Brownie's there that were giving out bookmark's that they made and helping with the cookies.

          

  Today Stacey took the boys to their hitting lessons. The boys want to play baseball so badly. They also want me to be their coach, but, I am still debating a little about it. I have been asked to coach again so we'll see. We decided that if they were going to play this year they needed some outside lessons on hitting. We may throw in catching as well. I realized that although I seem to be able to have great patience with other people kids sometimes I cannot work with my own. They get nervous because they want to please me so much and then give up too quickly. I don't know how to deal with it and then get frustrated myself. The lessons are going well and today they were both excited to show me what they learned. I will be helping them with their homework. Once they are past the initial stages and have a little bit of confidence we will be back to working together.

                  

  Last week I went to the wake of a little boy. He and his family started their journey last July and we talked in the hallways and at the clinic many times. I met them on an elevator ride I will never forget. He looked so sweet in his stroller and he was having a good day. They were taking him outside for some fresh air for the first time in months. It was a ride of celebration just to spend a little bit of time outside Albany Med. There are bonds that are made with other families that can be both very fleating yet very strong. Sometimes we may only see them for a single visit other times we will see them regularly and really get to know them. I have heard it being equated to being thrown in to a foxhole with someone. I usually say that ,"We have all pledged a fraternity that we never wanted to join." It sure feels like the longest, hardest hell week I've been through. At the wake their family was more concerned about us and Ben. They have been very supportive of us and we talked a little about how throughout this journey that is so dark there are so many bright lights along the way; so many joys to celebrate and fantastics acts of love. 

2/15/2009

  Ben is home now. His x-ray was still showing some gunk in his lungs. He hasn't had a fever in over 24 hours. His counts have been improving although he has had several minor nose bleeds. None of his blood or urine cultures showed anything growing. He will be going into the hospital tomorrow for a clinic appointment. They will check his counts and listen to his lungs. They may or may not order another x-ray. He is still receiving an antibiotic. We switched him from the IV to a pill. I didn't get around to putting in the update because we were having a good time with everyone home. The boys and I watched America's Funniest Home videos together and the 3 of us laughed a great deal. It really is nice to have everyone under the same roof.

             

  Tomorrow James wants to go with me to work so I will probably bring him while Stacey and Ben are at the clinic. He told me to make sure I bring enough snacks and drinks for him. He also suggested I bring a TV for my office. When I pointed out that we would be at my place of work Ben started laughin and we all ended up laughing again.

             

  Last Sunday during church school Ben wrote a poem about prayer that I wanted to share with all of you.

Prayer is...

   

Prayer looks like

Prayer is singing, talking

Prayer is being one with nature

Prayer smells like dogs.

Prayer tastes like food

Prayer is having fun.

               Ben

2/13/2009

  It looks like Ben is going to be in the hospital for at least a couple of days. They have given him blood and antibiotics. They are also doing blood and urine cultures as part of normal procedures. He has been having fevers although he looks good. We are also watching his counts to make sure they do not drop further into the critically low ranges. Last night James and I stopped down to bring dinner from McDonalds and to deliver Ben’s newest action figures. He asked his Mom for the Yellow Gormiti (the Earth Tribe) figures and I actually found them or at least 6 out of 7 of them. I only missed Mole the Holedigger. He was thrilled. It was amusing to see him playing with them on the hospital bed table. James was happy because he received the ones that were paired up with the yellow ones. I also had to bring Caymus and a special pillow case so Ben could sleep. Since he is going to be staying longer I will end up bringing one of his Ugly Dolls down with me this afternoon.

          
   James brought Ben’s homework and Valentine’s cards to school today. They are having parties and distributing cards to their classmates at school today. Ben and his Mom filled them out while they were at the hospital. Since she had James’ cards with her they did his too. James did his homework last night when we arrived home and was great this morning about getting ready for school. He is a really super kid. James was very funny this morning. He asked, “Are you going to be getting Mommy something for Valentine’s Day?” I told him that I really hadn’t thought about. He pointed out that I should. When I was dropping him off at school he reminded me to pick something up to give her on Valentine’s Day.

         
   On Wednesday night when I was putting the boys to bed James asked a question completely out of the blue. He asked, “What if Ben dies from his cancer?” Ben who was buried under the covers immediately said, “Daddy he is creeping me out.” I told Ben that it was ok for James to ask the question. I answered James by telling him that we were doing everything we could to keep that from happening. I said, “Ben is receiving chemotherapy and we are working with the best doctors in the world to get rid of the cancer. A meteor could come out of the sky and hit the house. We don’t know when or how anyone is going to die. That is why it is really important to live life as best we can every day and every moment.” I think I said some other things and then I asked if they were ok with my answer and they both replied yes. Like most conversations with 8 year olds we then immediately moved on to other topics like super heroes, comic books and TV shows. Last night he really wanted to go see Ben and give him the toys. 

 

2/12/2009

   Ben is at the hospital today receiving his chemotherapy. He is also receiving a unit of red blood and a unit of platelets. The cough that had been a little scary for us went away after I started using the humidifier in the boys’ bedroom at night. The other day we noticed it was coming back. The doctors listened to his lungs today and it sounds like he may be developing pneumonia in one of his lungs. He had an x-ray and it confirmed the pneumonia. The boys were looking forward to Cub Scouts tonight. We have to see if James is going to be able to make it to the meeting. He is getting IV antibiotics right now. He is being admitted for an overnight stay. He has a fever and also has the rigors. He still needs to receive 2 units of red blood cells. They want to keep an eye him.

             
   It is so hard to decide how much to limit his exposure to the outside world. We try to ride a fine line by watching his counts closely and gauging which activities are likely to create exposures. One thing we have seen is how protective other people are of him. One Sunday he insisted on going to church when his counts were low. I told him he could, but, he had to wear a mask and stay away from anyone who looked sick. After church someone came up to me and said, “You know if he doesn’t want to wear a mask we can get the whole congregation to wear them.”

                    
   On Sunday Uncle Rick and I took Ben and James to see Siena College’s Women’s Water Polo team play in their last scrimmage before their first game coming up this weekend. The scrimmage was a against a local club team called Adirondack. It is a coed team mostly comprised of men. It was a great game and the team did really well. When we walked into the pool area, just before the scrimmage, several of the women shouted, “Ben!” A couple of them weren’t suited up for the game and they came over to talk with the boys. After the scrimmage the whole team took us to the cafeteria for dinner. It was amazing to see these young women reach out to the boys and just talk with them about all kinds of things. The “all you can eat” ice cream and Slurpies were big hits. At one point it was like the boys were holding court at each end of the tables. James was trying his best to make them laugh at our end of the table and Ben was just talking away at his end. If I didn’t know better I would have thought Ben was putting the moves on a couple of them. I guess 2 of them offered to be his Valentine and he told them he could only have one real Valentine. Uncle Rick made a comment about them being, “True Stowell boys.” I pointed out that I was never that good with the ladies. I don’t want to break any hearts so I’m not going to tell you the rest of the story right now.

    
    Many of you have been asking us about the cookbook that the entire 3rd at Blue Creek is putting together for Ben. I am not sure where the idea came from, but, the kids seem really excited about it. I have heard several cute stories about the children working with their parents to come up with recipes. The last time I checked there were close to 200 recipes. The deadline(2/20) is tight so the books can be received before Mother’s Day. The best way to submit the recipes is via the web. Go to http://www.morriscookbooks.com and select “typensave ONLINE” on the right hand side of the page. Select the “login” button and a login screen will open. In the Contributor line put your name as you will want it to appear in the cookbook – i.e.“Stowell Family””Ben Stowell”. The Group Login is bluecreek and the password is hmu5a at that point select ADD Recipe and the rest is self explanatory. If you wish to purchase copies of the cookbook there is a form in the information on the events page to send in to the school. The final cost of the cookbook will depend on the size of the cookbook and the number ordered. I will put all the information that I have on the Events page of this site tonight so it is easily accessible.

2/10/2009

On Thursday we spoke with Dr Pearce about the PET scan results. I am sorry to keep you all waiting, but, we wanted to talk with Dr DeCaprio on Monday about the boney bump we were seeing on Ben's right shoulder. It turns out that the boney bump is actually part of his shoulder/scapula that is protruding because of his muscles compensating for his range of motion issues. The original limb salvage surgery coupled with the subsequent surgeries has removed some of his muscle tissue and is other muscled are compensating. We can try to do physical therapy, but, it is possible that his shoulder muscles could loosen up to much and he could lose muscle movement in other areas or develop stability issues with his shoulder.

The PET scan showed a total of 10 tumors in his lungs. In a relatively symmetrical fashion there are 5 on each side. The largest is 1.3 centimeters or about the size of the tip of your finger. A second one is slightly smaller than the first. The rest are from 1-3 millimeters. A millimeter is about the size of the diameter of a toothpick - the frilly sandwich ones. We gave Dr Pearce all of the information that we have on the Cyber Knife and AMC is reaching out to the doctors at Boston Medical Center to see if Ben can get the treatment there. We don't think there will be an insurance issue because it is supposed to be cheaper than another bilateral thoracotomy. He has started the new chemotherapy and it has lowered his blood counts. On Friday he received 2 units of red blood and 1 unit of platelets yesterday.

He is absolutely amazing. Stacey and I were up late last night and neither of us is sleeping really well. I was awakened this morning by Ben standing at the foot of our bed shouting, "Wake up everybody. Rise and shine." I looked down and there he was completely dressed with his coat and hat on ready to go to school. He even had his backpack on. He had even made himself breakfast. I made him take off his coat because the bus didn't come for 20 more minutes and we usually drive him anyway so we don't leave for 30 minutes. He really wanted to take the bus. I told him that I would drive him because we didn't want him to take the bus to school. In a stroke of logic he made his case, "What is the difference between going to school on the bus and coming home on the bus. You let me come home by bus most of the time, unless I have to go to the hospital." I looked at him and said, "Are you sure you aren't a lawyer? You make a very good case." He ended up taking the bus today and he was thrilled to be heading to the bus stop with his friends. I drove James to school because he over slept like the rest of us.

When Ben and I opened the door there was a surprise on our porch. Someone had left 2 Dunkin Donuts coffees on our doorstep. Let me tell you, when you oversleep and are rushing to make things happen it is a really nice turn around for your day to find fresh hot coffee on your doorstep. We are not sure exactly who it came from because there was no note. We are pretty sure we know who it came from because we only have a few regular morning visitors. Thank you...The coffee turned around a day that was heading downhill. Of course I have a thing for knowing where my food comes from so I made Ben test the coffee to make sure it wasn't poisoned. I'm only kidding Ben doesn't drink coffee. I let Stacey sample hers first.

Over the weekend I shared the news of Ben's tumors with my sister and she pointed out something to me. She said, "You know this isn't the first time things haven't looked really good. Every time you guys have found some new treatment or drug. You keep finding something new to try. You keep coming up with choices or they present themselves." I agreed. We also received an email from one of the Moms whose child is a fellow osteosarcoma warrior in reply to my posting to the ACOR email list about Ben's situation. In it she wrote, "Wherever your journey takes you and Ben I don't doubt that you will continue to be an inspiration to others. I pray you find the answer you are looking for. For me and (my Daughter), it came when we were just about to give up."

The 3rd grade class at Blue Creek is putting together a cookbook to help their classmate. It is going to be a collection of family recipes. I will post the information on the events page. It is a really nice idea and I understand that many of the kids have been helping their parents pick out and create the recipes. Ben wants us to put his cinnamon toast recipe in it.

2/4/2009

 Ben is doing well. Although, he has a cough that hits him mostly in the morning that scares the hell out of both Stacey and me. We believe that it is mostly from the dry air in the house and his perpetually runny nose. We have started to give him Sudafed at night and I am going to set up a humidifier in their room tonight. Humidifiers scare us a little because his immune system is up and down we don't want to encourage molds. He feels great and is a typical 8 year old boy enjoying potty humor with his brother and friends. We will be meeting with Dr Pearce tomorrow to discuss the PET scan results and next steps. We want him to have the Cyber Knife procedure to kill the tumors in his lungs.

We have had a couple of encounters that I would like to share with you. Last week I took Ben to Barnes & Noble bookstore because he wanted to use a gift card to buy a book on the Ugly Doll's Uglyverse. He asked for help and a nice woman helped him find it. I picked out a book for myself and we headed separately to make our purchases. The beautiful young woman who was taking my credit card looked at Ben who was obviously with me, but, being helped by a young man near us. She leaned forward and quietly said to me, "I'm a childhood cancer survivor. Stay strong. He looks wonderful." I thanked her as we completed the transaction. Ben was done first and came back to me. I told him I wanted him to meet someone. She looked to the other young man quickly almost to make sure he wasn't in earshot. She leaned forward and whispered to Ben, "I'm a childhood cancer survivor. I just wanted to say hi and let you know there is life after cancer." He thanked her and told her with a big smile, "I'm going to be a survivor too." As we headed to the door he started to skip. He was thrilled to have his new book.

The last time we went to Friendly's the four of us were sitting there talking and waiting for dessert. Our plates had just been cleared. I had noticed a man take interest in Ben when we were being escorted to our table. He was there with his family. He looked at Ben in a way that was not typical of the way strangers often check him out. There was something in his eyes that really made him stand out. I can't put my finger on it. It was a mixture of surprise, love, awe, empathy and kindness. He was definitely a man who works hard to make his living and support his family. I was sitting with my back to the man and his family. I noticed Stacey look up over my shoulder like someone was coming up behind me. Before I could turn and look I saw a pile of 4 Friendly Valentine's Day ice cream gift certificates appear at my right elbow and a man's voice whisper, "Bless you." in my ear. I was a little dumbstruck and before I or Stacey could say anything he was gone and out the door.

We are often blown away by the kids who go to Blue Creek. Ben missed several days of school last week. When he is not in school the kids in his class really miss him. If he misses 2 days in a row they worry that he is going to be out for a while again. When I drop him off in the morning after an absence kids will often stop and wait to walk into school with him. On Sunday Ben received an email from one of them. It was obvious that the email was not instigated by his parents. Parents who I might add must be very proud of their son. I have personally witnessed this young man's care for both Ben and James. He is a good friend to both of them. Danny is aware of the blood drive that the Latham Fire Department is having in honor of all of the blood Ben has received. Here are the words of an 8 year old friend:

Hi Ben,

I hope you are feeling good, and come back to school soon. I
miss you. This is a picture of me playing guitar hero. When your
feeling better you can come over and try it, it is really fun. My
favorite song to play is "No sleep till Brooklyn". I like watching
the video of you in New York City. My mom and dad said "Hi Ben get
better soon." I hope you get a lot of blood at the fire house. I have
a lot of blood I could give you. I can't think of anything else to say
for now. Bye.


Your Friend
Danny.


.

1/30/2009

  A quick update to let everyone know what's going on with our family and Ben. The PET scan today went wonderfully. Ben did a great job holding still and dealing with receiving the contrast fluid via and IV needle that they had to put in. He really hates them and he was very brave. We will not know what the results are until next week, but, we will have a great time this weekend. Tonight Stacey and the boys are going to Family Bingo Noght at Blue Creek and I am going to a fundraiser for the Leukemia and Lymphoma Society - a wine tasting event called "A Taste of Compassion." It will be nice to see Dr Pearce at a more social event instead of in the clinic.

       

  We are planning on doing more snowboarding this weekend. Ben, James, Uncle Rick and I are heading to Willard Mountain tomorrow morning for a lesson. After that we may be going to a monster truck event in Albany. I have to check on the seats, Ben, has a hard time if the seats are in the upper sections. On Sunday Ben is heading to Double H Ranch for more snowboarding. James may or may not be heading north with us. We will let him decide.

1/29/2009

   Ben received his MTP today and started the Gemcitibine. We are going to add the new drugs one at a time to watch for reactions to them. He has the PET scan scheduled tomorrow. We were joking that the scan started with a hamster and moved up to dog. He requested that no reptiles be used and we all chuckled then he looked at me and said, "Really...They don't really use animals do they." We all laughed as I affirmed that they did not really use animals and that it was more like a cross between an MRI and CT scan. When they told us he had to lay perfectly still for 28 minutes and he replied, "I can do that. I did it for 2 hours...twice for an MRI."
    
   I just got off the phone with the Red Cross. She was thanking me for allowing the Latham Fire Department to hold a blood drive in honor of all of the blood that Ben has received throughout these past 2 years. She asked how much he has received and I answered, "I have no idea. I lost count a long time ago." She said, "You know it's a lot when you stop counting." Here she was, thanking me when I am the one who really has the reason to be thankful. Every time Ben has needed blood it has been there for him. I know that some of you have given blood in his honor before and we are grateful. If you have and the timing is right please considering supporting the Latham Fire Department in their efforts. If you have never given blood before and are over the age of 16, in good health and have been thinking about donating blood this would be a good excuse. The Blood Drive will be held on February 17th from 1-6 PM at the Latham Fire Department - 226 Old Loudon Rd. You can register online at http://www.donatebloodnow.org/DonateBlood/Listings.asp?co=Albany or by calling Diane Burega @ 518-785-8194. The woman from the Red Cross assured me that they will have the staffing there to accomodate everyone who wants to donate.

1/27/2009

 Spending the day at Double H was wonderful I totally enjoyed my time with Ben on the ride both ways and during the day. We had lunch together, but, most of his time was spent on the slopes with his instructors. The lessons started at 10am and went until Noon and the started back up at 1pm and Ben came of the mountain a little before 3pm. His instructors told me that although he was a little bit melodramatic a couple of times they have rarely had a student as determined to learn. He wants to be able to snowboard and it showed. When he came off the mountain for lunch he couldn't wait to get back outside. Double H is going to try and get him on the mountain as many times as possible this winter. We have 4 more trips scheduled. They are also trying to get us up there for more than 1 family weekend so James can go to. We are on the cancellation list so if a family can't make it we will be able to go. Ben's goal this winter is to be able to snowboard down the Double H hill under complete control and completely on his own and with James. Ben's instructors at Double H were wonderful. Greg is the head of the snowboarding school at Willard Mountain and Sevita is the head of the Winter Sports program at Double H. I didn't take too many pictures because I turned out to be a major distraction for Ben. We are going to try to get the boys snowboarding every weekend. The trick for us is getting James the lessons and time too. I talked with Greg about bringing the boys to Willard Mountain on Saturdays for individual lessons. The double H days are on Sundays. The big issue for Double H is that they need more snowboarding instructors. They provide all of the training so all the instructors need is to be experienced snowboarders or skiers.

While Ben and I were at Double H James and Stacey were at the Arts Center in Troy. James participated in a dance and movement class based on the Harry Potter stories with Ellen Synapoli and the Eleen Sinapoli Dance Company. He had a wonderful time and really enjoyed participating the movement and dance. He was the only boy in the class so he is a liitle self conscious of his interest in the class. Stacey told him that his father really always wanted to be a modern dancer. James and Ben both have been growing so fast I don't think either of them is really comfortable in their bodies so it is wonderful to see them participating in things that keep them moving and developing bapance and coordination.

Ben had his MTP infusion on Monday and will be getting the MTP, Gemcitibine and Taxatere on Thursday. On Friday Ben will be getting a PET scan so we can then lookk at the extent of his lung mets and plan for the treatment/removal of them. On the outside Ben is just a really tall 8 year old boy. He runs, plays, dances and snowboards without even tiring quickly now that his counts are getting into the normal range. Today he proudly brought his favorite ugly doll into school to show his teacher. The boys love these ugly dolls and have even read the books ont the "Uglyverse." Unfortunately Ben learned the 2+2=cookie in the uglyverse and used that knowledge of math in the uglyverse on one of the questions on his last math test. We had a dicussion on bringing the uglyverse into our universe.

                    

              

             

           

          

1/24/2009

  Yesterday was a pretty normal day. The boys went to school, I went to work and Stacey worked at home. Friday night was the "Family Dance" at the boys elementary school. It is sponsored by the PTA and the parents are mostly wall flowers while the kids mostly run around with a litle dancing and conga lines thrown in. It was wonderful to see the boys interacting with their friends. We spoke with many of the parents as they absolutely marvelled at Ben. It was hard to say which made him stand out in the crowd - his bald head or his dress shirt and tie he insisted on wearing. There is literally no outward indication that there is anything going on inside of him. His counts are a little low so he is slightly pale, but, nothing noticable. The support of our school community is wonderful

         

  Today I took the boys to Jimminy Peak and they took a first day 1 1/2 hour lesson on their snowboards. Let's just say they spent most of the time with their butts on the snow. Neither boys was that successful, but, their instructor told me that Ben really worked hard and never gave up although he was a little dramatic at times. James lost complete confidence in himself at one point. I saw him on the hill with his head in his hands so I investigated. After a little while he decided to give it another try and he pulled himself back up and finished the lesson strongly. He was very proud of himself and so was I. We really had a great time and I will post some pictures after our adventure tomorrow. When we arrived hom we found out that there is a space for Ben at Double H tomorrow for more snowboarding so we are heading up there furst thing in the morning. James and Stacey will be going to the Art Center in Troy for a Harry Potter Creative Dance Activity with the Ellen Sinapoli Dance Company. When the boys came in from the lesson Ben immediately said to me, "That was one of the best things I've ever done in my life." He is hooked on snowboarding. The joy was evident on his face. We will probably be going back next week.

1/22/2009

   We spent the day at the hospital. Ben received his MTP treatment and we talked a great deal with Dr Pearce. She had not heard back from one of the osteosarcoma experts I mentioned yesterday. The other one offered some good advice and will be going through Ben's case in great detail. One of the 2 doctors is in NYC at Sloan Kettering and he was Ben's oncologist when Ben was at Sloan. Ben is going to continue to receive the L-MTP-PE. He is currently receiving it twice a week. In the next couple of weeks it will be reduced to once a week. We have decided that 3 drugs will be added to his chemotherapy. Gemcitabine (Gemzar) is one of the drugs he will be receiving. He has received it before and didn't experience any side effects. The 2nd one is Taxatere. It was originally created to treat breast cancer. I searched the internet and very quickly found several folks who had positive results with this combination. The 3rd drug Ben will have added to his chemotherapy is Avastin. There have been some questions about the efficacy of this drug as a treatment on its own. It has showed to be effective in combination with other drugs. It works well on very small mets by effecting the way oxygen flows to the cancer cells. We like it because we call it the pirate drug - "Avast there matey." By the way avast means halt or hold - stop what you are doing. We may change the cocktail a little bit pending the input of the experts Dr Pearce is reaching out to, but, that is the chemotherapy plan for now.

            

   The next issue is what do we do with the tumors that are in his lungs now. First he will be having a thorough PET scan next Friday. He has scar tissue from the surgeries and his CT scans are getting harder to read. One of the ways they tell what is what in the images is to compare them with previous images and look for changes. They also use their knowledge of images and what tumors and scar tissue normally look like to differentiate. We will have an even better idea about the extent of the tumor presence within Ben's lungs. The PET scan will enable us to truly plan the method of removing/destroying the tumors in his lungs. Ben does not want to have a bilateral thoracotomy right now. The only difference between the operations he has already had and the surgery in Germany is that they use a laser instead of a scalpel to remove the tumors. He would still be opened up and have chest tubes and a catheter. We have decided to seek an alternative for now. We are still getting our passports just in case. We have looked at traditional radiablation (radiation treatments) and that has risks of lung pneumothorax(localized collapses of the lungs) and damages healthy tissue. Cryo-ablation involves freezing the tumors, but, that is still somewhat experimental and carries some of the same risks as the traditional radiablation. We have decided to pursue a new radiation treatment called Cyberknife. It uses a low level radiation beam that passes through the healthy tissues and focuses on the tumor. By shooting numerous beams from different directions only the tumors get the high doses of radiation. Computers track the tumors and allow for breathing movement of the tumors and follow the target. A member of our church first called this technology to my attention. It has matured some since he first mentioned it to me. It is more accepted and there are more machines available. We will probably be going to Boston or another teaching type facility because they usually have more experience with newer technologies.

                 

  We have a plan. We have alternatives. Although the news is a kick in the teeth we are not out of the fight. Ben's spirits are high and he appreciates that we have involved him in the decision making. Now we just have to confirm that the Cyberknife is appropriate for the types of tumors that he has in his lung. We also have to make sure there is space available for his treatments. We have not gone down the road to see if our health insurance will cover it. We will cross that bridge when we come to it.

                   

  We want to thank all of you. Many of you spent a great deal of time researching potential solutions for Ben. The Green Drakkoman truly has a team the size of an army in this battle. We have hope. We have options. Ben is strong and chooses every day to live life to the best of his ability and to be a normal child.

1/21/2009

  Ben had his CT scan and the staff made sure that everything was as perfect as could be to get the best images with contrast and without. I was even allowed to stay with him in the room with my lead apron on. He was brave as usual and remained very still in a position that had to be uncomfortable. Before the scan while we were waiting in the room Ben had the chance to see some of his friends who work in the radiotherapy department who irradiated his lymph gland area. He really enjoyed visiting with them. After the scans we went upstairs into the clinic to have his port-o-cath de-accessed and await the results. Dr Pearce came in and gave us the news. The osteosarcoma is back. He has two tumors, one on each side that are the size of an adult little findernail. There are several other smaller tumors on each side. Ben listened and was very concerned about having another bilateral thoracotomy. He doesn't want chest tubes or to be catheterized again. We explained that we would cross that bridge when we come to it. She also recommended that we stop the ifosfomide because it doesn't seem to be working any more and it is really taking a toll on him. We agreed. We will be adding 2 or 3 additional drugs to the MTP to try to halt or slow the progression and growth of the tumors. I am currently researching alternatives to the bilateral thoracotomy. We have the laser surgery that is in Germany that I mentioned last time. We also know about a technique called Cryoblation that is done at Johns Hopkins. I have also heard about a tool called the CyberKnife that sounds interesting. Dr Pearce is consulting with some of the best osteosarcoma specialists on the planet to see what she can find. Other than his concerns about the surgery Ben seemed to take it very well. Ben left the room to go play with Toshiko in the playroom. Stacey broke down as she asked Dr Pearce the question that everyone is afraid to ask. Dr Pearce just said, "It's not good. We still have options, but, we aren't in a good spot. It hasn't responded to any of the normally used protocols." Dr Pearce put her arms around Stacey and just held her. I just sat there numb. Stacey gathered her composure and brought Ben home and met James after school. She ended up taking them to their guitar and drum lessons. I cried my way back to work.

          

 After work we took the boys to a hurried dinner at Friendly's. I dropped of Stacey and picked up their friend Cameron and took the 3 boys to Noogieland. They had a great time. It was really nice to see them laughing and playing. It was talent show night and everyone came up with something to show off. After we arrived home the boys got ready for bed. Stacey asked me if I told James. I hadn't so I went downstairs and sat next to the boys on the couch. I asked Ben if he had talked with James about the news we had received at the hospital. He said no so I looked past Ben to James and said, "James I want to tell you what happened at the hospital today." He looked up from his super hero book and said,"Ok, go ahead, I'm listening." I said calmly and with a strong, natural voice that surprised me, "James, Ben's cancer is back..." As soon as the word cancer crossed my lips Ben jumped up and looked at me with a look of shock that turned turned to one of terror and tears as he started to shout, "What do you mean it's back? It can't be back...I'm going to die...I don't want to die ...You said they were tumors. Not again. I don't want it in me any more. Get it out! Get it out! Use lasers. Do something! Make it go away!" As this was going on James offered to give him a hug. Ben ran past him and away from me as I followed him. He continued to repeat himself and turned to me and said sharply, "I'm going to bed." Stacey was in the boys bedroom turning down their beds and heard Ben as he ran up the stairs. In one of the most amazing feats of emotional strength I have ever witnessed she calmed him down as we both apologized saying we thought he understood the situation this afternoon. We explained to him that we had a plan and that we would follow through on that plan. Stacey said many things that I can't remember. She told him that every one dies, but, that right now wasn't his time. She told him it was ok to be afraid and that we were doing everything we could to get rid of the osteosarcoma. I stroked his back as she held him. We wiped away his tears and he quieted down. He lay down and held his favorite Ugly Doll. He asked us to come up with something other than the thoracotomy. James walked into the room with his arms outstretched and said one word to Ben in a very cute, loving way, "HUG!" Ben smiled. Stacey read to the boys and we talked about Noogieland. Before long Ben was smiling and we even caught a laugh or 2 before they fell asleep.

           

  On the outside this beautiful little boy with one of the noblest souls I have ever met is a picture of health and vitality. On the inside this brave little boy's body is being quietly undermined by an insidious monster - osteosarcoma. 

               

Thank you all for your prayers and kind thoughts.

1/20/2009

   Ben is very excited about today. He is thrilled that it is a historic day. He loves the fact that Barack Obama  talks of Abraham Lincoln. Abraham Lincoln as most of you know is Ben's favorite president. Ben knows a great deal about him and thinks he is the greatest president we have ever had. I think back to a birthday party the boys were at during the presidential campaign. During the party the group of 40 or so 6-8 year olds boys spontaneously began chanting loudly, "O-Bama, O-Bama, O-Bama" over and over again. It was amazing and the adults just looked at each other. I came down the stairs at home this morning ready to bring the boys to school. Ben turned to me and said smartly, "I see you're not dressed in the spirit of the day. Where is your red, white and blue?" I apologized telling him that I didn't know there was a dress code today. He insisted on bringing an American flag to school. I asked him about it and he told me that he was "Proud to be an American" and wanted to show his pride. I hope they watch some of the inauguration at school. Ben's CT scan is scheduled for 1 PM so I am not sure what he will get to hear or see.

                  

  We were asked by the Chidlren's Hospital at Albany Medical Center if Ben would be one of the honor patients at this years St. Baldrick's Day fundraiser in march. It is an event where people have their heads shaved publicly in solidarity with the children who are facing cancer. It is a very celebratory function and has been held at the Pump House in Albany for the last few years. 2 years ago James shaved his head and was on the front cover of the local newspaper. All of the money goes to fund programs and research at the Hematology-Oncology Clinic that are not normally covered by insurance. Ben is thrilled so we said yes. I will post more details about the event as I receive them in case any of you wish to join Ben's team and shave your heads in honor of him. The 4 of us were talking about it the other day. Of course I don't have much to shave so I have started to grow my hair out. James is still on the fence about doing it. Stacey was saying that she is thinking about shaving her head. James said to his mom with extreme ernest, "You don't want to do it." I asked why and he quickly added, "Because you don't want to see it. I have seen it in my dreams and it isn't pretty. Mommy you are beautiful with hair. Don't do it." We laughed it off and all of us chuckled about it. James then quietly said, "Mommy don't do it. I've seen you bald." I found myself choking up as I realized the seriousness of his dreams being invaded. I knew he had on occassion had bad dreams that he didn't want to talk about. I never thought mommy being bald from chemotherapy was one of them.

1/19/2009

The weekend was fun and somewhat relaxing. I managed to avoid the deep cleaning of the bathroom. We started work on the boys Pinewood derby cars for Cub Scouts. They are very excited and have very specific designs in mind. I can't wait to see how they come out. On Saturday Ben received notes from his "Chemoangels" - Angel Kasey and Angel Julie - it really put a smile on his face. I remember when I was a little kid how special mail made me feel. The notes are always simple and sweet. They usually talk about what they have been doing and wish Ben well. For instance Angel Julie was up late milking their cows. She lives on a farm. Angel Kasey talks about the fun she has with her children and Ben talks about her duck periodically although she has only mentioned it a couple of times. We do know that a couple of you have actually signed up for the program. It is a big commitment for a small act that brings an amazingly huge benefit for those receiving these loving notes every week.

      

Another amazing thing arrived in the mail. We signed James up for the Super Sibs program soon after Ben's diagnosis. We were, and still are, concerned about James and how he is getting through everything. James received a large envelop from Super Sibs. He was happy that he had some mail too. He took is into the family room to open it. All of a sudden he let out a big whooping yell - "It's a certificate of Achievement." He read it to us with the pride of someone who won an Academy Award. It was given to him for being a great brother during 2008. He was officially recognized for his wonderful achievement. We are going to have it framed and will be putting a photograph of it on James' page. He was dancing around with such joy and Ben joined into the celebration. It was really cool and actually brought a tear to the eyes of both of the adults in the room. I wish I had had the video camera ready or any camera handy.

 

On Sunday after church Ben and I went to our traditional breakfast at the Circle Diner. It was really nice. We ran into some friends from the baseball league the boys participated in. Ben and James both want to play again this year. I have been debating about the level of involvement I can pull of this year. Many of the adults involved with baseball last year have been encouraging me to coach again this year. After seeing them at breakfast I am strongly considering it. Ben really likes it when the staff at the Circle Diner recognizes him and says hi. It's kind of like walking into Cheers with Norm. We also had the opportunity to see Brendan's aunt and she came over to say hi to Ben. Brendan is Ben's friend from Siena who had osteosarcoma in his leg and had a scholarship to play lacrosse there. Ben thinks of him as a major inspiration and talks about him as a fellow survivor. It was nice seeing her. Brendan is 6'3" tall and Ben once told him that the doctors had told him that he was going to be 6'4" so Brendan could look up to him.

       

Ben is at the hospital today receiving his MTP treatment. His platelet count is still low so he is also receiving a platelet transfusion. Since there was no school today Stacey brought James with her. We didn't think Ben's platelets would be low enough to require a transfusion. I spoke with Stacey a little while ago and James is doing a great job in the playroom at the clinic in the playroom entertaining him, playing with other kids and the child life specialist. He hasn't complained once about having to be there. The boys and Stacey were supposed to be going to see "Hotel for Dogs" at 1:30 with the Starlight Starbright Foundation. Obviously we had to cancel. We will probably go tonight after going to Carrabba's for dinner. We try to eat there at least once a month. Apparently some of you folks do to. Remember we did the experiment about having you thank them for supporting Ben by asking to speak to a manager and telling the manager that you were there that night as a thank you for the Latham Carrabba's helping Ben out. Guess what? It worked. Thank you for thanking Carrabba's. Feel free to thank them again.

         

Ben will be getting his follow up CT scan tomorrow so we can find out more about what is going on inside his lungs.

 

 

1/16/2009

   Ben and James are at school today. James was happy and proud of the 2 rattles he and I put together last night for his science homework on sound. He demonstrated them for Stacey and I this morning. He showed us how to make them loud, soft and the differences between them. Ben of course was ready to leave for school 30 minutes before it was time to go. He missed school yesterday because he had to receive his MTP infusion. He also had to receive platelets because his counts had dropped again to 11. So it ended up taking most of his day. Stacey and Ben arrived home around 4. Stacey emailed me at work to ask me to make sure James was going to be met at the bus stop. As the bus pulled up at 3 he hopped off and ran to me. It is always fun to meet James at the bus stop because he is so happy and surprised to see me.  

                   

   We still don’t have any news about the 2 artifacts in Ben’s lungs. We have discussed with Dr Pearce the adding of some additional chemotherapy to his treatment. I believe the correct terminology to describe what we saw on the images is indeterminate. Ben will have CT scans redone next week so we can see what is going on. I am thinking about talking to Dr Pearce about using a different imaging technology or going to a location with newer scanning equipment. Having previously worked for a company making MRI machines and other imaging equipment I understand that new advances are being made faster than most hospitals can afford to upgrade.

            

  Life is as normal as it gets around our household. We have decided to spend the weekend close to home and take rain/snow checks on a couple of offers we have had to go snowboarding/skiing this weekend. Between the really cold forecasted temperatures and Ben’s recovering platelets it seems the smartest thing to do. Of course that means that I will be spending at least part of the weekend doing one of my favorite activities - deep cleaning a bathroom. I’ll also be spending some quality Wii time with the boys.

1/14/2009

   Last night was Noogieland night. The boys absolutely love that place. It is hard to believe that we have been going there for a little over 2 years. Ben really wanted to go, but, it starts at 6 PM and he was due to receive the IV antibiotic infusion at 6. Stacey offered to bring him over after it was done, but, he didn't want to show up late. They usually do circle time at the beginning of the night. Circle time is when they all go around the room and talk about their week and answer a question. It's a key part of the program - the rest is mostly play or activity time. So I packed up the infusion pump, IV pole and drugs and planned on setting him up when we arrived at Gilda's Club. I explained that if any of the kids were upset by it or if there were any objections at all we would find another room for him to get his IV antibiotics. He agreed and was just thrilled to be going. When we arrived I asked the program coordinator if she thought it would be ok. She sad, "We'll find out. Go ahead and do it we'll address any issues if they come up." I hooked Ben up in another room and he went and pushed the pole into the room where the kids were going to have stories read to them by the local Junior League. He was a little disappointed to not be sitting in a bean bag chair like the other kids, but, loved it. I sat outside the room waiting for the pump to beep. I had my alcohol wipes, saline and heparin flushes to use to disconnect him. As soon as it beeped I went into the room turned him away from everyone and disconnected him. The woman telling the story never missed a beat. I did notice that one of the kids seemed a little upset by Ben's IV pole. She stared at it and him a little. I also saw her leave the room when I was disconnecting Ben. I asked the program coordinator and she said that one of the kids had a reaction to the situation with Ben. She talked about how the pole reminded her of her mother and she opened up for the first time about her mom's battle and her feelings. The coordinator said that bringing Ben's IV to Noogieland turned out to be a good thing. I actually thought what a testament to the program and the kids there that Ben felt comfortable enough to be connected when he was there.

          

   Today the boys are at school. Stacey will go and pick Ben up and bring him home for his next antibiotics IV. Tomorrow he will go to clinic for his MTP treatment and to get his blood counts checked.

1/13/2009

   

   On Sunday Ben was released from the hospital. We are giving him IV antibiotics at home every 6 hours. He is very enthusiastic about going to school. I think his enthusiasm is rubbing off on James. The boys are at school today taking their standardized tests - ELAs. We explained to Ben that he shouldn't worry about them and just do the best he can. The tests aren't testing him they just want to see how he is doing and the test is really for the school. On the ride home from the hospital Stacey and I were talking about a number of things regarding life. The boys were having their own discussion in the back. One of the things Stacey and I were talking about was employment. It seems that several of our good friends are have lost their jobs recently because of the economy. We talked about how retirement was disappearing for our generation. I told her that my plans are to retire and that I would want to do some consulting, create art, work in the non-profit world. I definitely think that I will be working until I can't and then the boys will take care of me. As we were talking Ben asked, "Are you guys talking about retirement?" I replied, "Yes Ben." He immediately added, "Don't forget the Bingo. You have to play Bingo." As we started to chuckle James added, "And Bowling, too...Hey, how come we haven't gone bowling in a long time." I almost replied, "Because we haven't retired yet." instead I told him that "We should definitely go soon."

        

    Yesterday Ben had his scans to see how he is doing with the new treatment. Stacey arrived at the scheduled time of 7 AM. I stayed home with James and brought him to school. Apparently although the hospital schedules CT scans as early as 7 AM the outpatient CT scan personnel doesn't arrive until 8AM. Ben was scanned sometime between 8 and 8:30. After bringing James to school I headed down to the hospital and met Stacey and Ben in the clinic. Ben's counts are still really low, but, he didn't need platelets or red blood. His ANC is 100 so he is still on the IV antibiotic and will continue to receive it until at least Thursday. When his ANC hits 200 he can stop receiving the antibiotic. Some parents would keep Ben home, but, we just can't bring ourselves to isolate him that much. He loves school and seeing his friends so much. We also know that James is being exposed to the same kids at school so he will just bring it home anyway. As we waited in the clinic the doctors checked him out and he received his antibiotic, MTP, and fluids. Dr Pearce showed Stacey the image and there were 2 spots the size of the tip of her pinky - one on each side. There was also some haze in the lungs. Dr Pearce explained to us that with him just having a fever and the images being less than stellar that we shouldn't be worried about it. She would schedule another CT for him next week. She also stated that she had had several other patients recently that presented things similarly and the artifacts turned out to be inflammations and they were gone on the follow up CT scan. We also heard of that happening on the ACOR osteosarcoma email list we belong to. Last night Stacey asked me what my "Read" of Dr Pearce’s talk with us was. I told her that I felt Dr Pearce just didn't know. The information was not clear enough and that she just couldn't give an answer based on the information at hand. We need to let Ben's lungs clear a little and get a comparison image for better information. Stacey said, "But, what did I think she (Dr Pearce) was thinking about Ben and..." I replied, "We got to see Dr Pearce the mom not the doctor. The intellectual, analytical part of Dr Pearce didn't have enough information so she fell back on the emotional, caring mom part of herself."

             

      After putting the boys to bed last night I came downstairs to see what Stacey was up to. I found her sitting on the couch with the computer in front of her. Her eyes were teary and I could tell she had been on the verge of crying. I thought maybe she had been reading about one of the other kids we know who are going through difficulties. I asked, "What have you been reading?" She answered, "Nothing." I knew immediately where her tears were coming from. I walked over and just touched her and said, "It's going to be ok. We are doing everything that can be done. We are in good hands. We just don't know and have to focus on the positive." The only thing to do with those tears is to let them come and get them out of your system and then move on to something to either distract your mind or make you happy. Stacey and I talked a little bit about how much osteosarcoma has stolen from Ben and our family. We have completely lost the ability to plan things more than a few days ahead that require a definite commitment. The boys were supposed to have several play dates with their friends over the holiday vacation and we spent most of it with Ben in the hospital. We were caught up in the routine of me working during the day and spending the nights at the hospital, Stacey being in the hospital with Ben during the day and running the house at night. We never managed to get James to any of their friend’s houses for the play dates. Stacey and I totally dropped the ball. All we had to do was call people and James would have been on his way - picked up and delivered. The past 2 years have been a siege and Stacey and I are showing signs of wear.

1/10/2009

  Ben's counts are coming back up. His platelet count is 27 and his white blood cell count is .4. He is doing well and his count recovery should speed up. It is often the wait for the curve to change to a positive direction that is the hardest. The sign on his door states that masks are required for those with cold symptoms and hand washing is required. If he he keeps improving he will be home tomorrow with us doing IV antibiotics at home. James opted to go to the hospital with Stacey so he could spend time with Ben. He also didn't want to help me finish cleaning out our storage shed. Time to make one more bill go away as we continue to try and simplify life.

Here is the link to a first stab at a video for a song that was recently sent to us by Suzanne Sherman Propp -

   

                                      http://www.youtube.com/watch?v=W_fPV5Xcy24

1/9/2008

    Last night Ben spiked a fever of 102.3 so we called the doctors and brought him to Albany Medical Center for admission. After arriving his temperature hit 103.3 and the Tylenol they gave him didn't seem to be doing much. His temperature only lowered to 101.9 after almost 3 hours. He was also put on an anti-biotic and they took blood for cultures and counts. He was given the Tylenol every 4 hours throughout the night. His platelet count was 18. On Wednesday his Platelet count was 4 so this seemed like an improvement to me. His white blood count was .2 and that is really low. It should be at least 20. Everyone coming into his room has to wear a mask. Finally this morning around 7 am his temperature was back in the normal range. He received a platelet transfusion this morning. On Wednesday he had 2 units of red blood and 1 unit of platelets. We may have to hold a blood drive soon in his honor to replace what he has used. I know that some of you have been donating blood in his honor already and we really appreciate it. It entered the realm of the absurd this morning when I automatically new where to sign on the blood transfusion consent form - even without my glasses on. The fever has broken and he is in good spirits. I will keep you all apprised of any changes.

    

    Unfortunately, it looks like we will not be heading to Double H this weekend for snowboarding. I spoke with Double H a little while ago and Ben is scheduled several more times this year and we sill have a family weekend for all of us to try our hand at it. Stacey and I have talked about it and we are going to try and work something else out at Gore or one of the smaller mountains to get the boys a couple of lessons. Ben is very disappointed that he won't be snowboarding this weekend. James was already a little disappointed because he was only going to be able to watch.

1/5/2009

  The Ifosfomide and Etoposide treatment went well. He ate and drank enough to keep his energy up. New Year's eve he stayed up until almost 3 AM. We actually violated the visiting hour rules and had a small party in the room. Everybody left just after midnight with the exception of me. We welcomed in the new year in another room that didn't have any patients in it with the nurses. It will be one of my most memorable New Year's celebrations. As I watched James and Ben blow horns and Ben shake a noisemaker with the nurses I thought back over the year. It was only 6 months ago that I was looking on helplessly as he seemed to be slipping away. We had seen so many tumors in his lungs that there were too many to count. He was inoperable. We rushed to complete his Make-A-Wish trip. I was terrified that we weren't going to be able to get him back home from San Diego. Stacey was confronted with a request from the doctor in San Diego to sign a DNR form. A request that she refused and did not share with me until we were back in Albany to protect me. A burden she chose to bear alone so I could be there for James knowing I would have been devastated. We threw the most agressive chemo at him and it nearly killed him. Instead it worked on the cancer and he was declared operable. The tumors were removed. We found a cancer drug trial that is the first new treatment for osteosarcoma in 20 years - that is almost half my lifetime. To see him running down the aisle of our church to get communion or blasting through the doors to get to school you would never know the war raging inside him. Only his baldness gives it away. We have learned as a family to take things one day at a time. It sometimes frustrates others when we will only make plans tentatively. 

              

  Next weekend our tentative plans are to take the boys to Double H Ranch for snowboard lessons. During the summer of 2006 Ben had told me that he wanted to learn how to snowboard that winter. I promised him I would make it happen. James decided he wanted to try it too. We made plans to go as a family with Stacey keeping us a place by the fire in the lodge. Then our world was rocked in September. In the hospital Ben met an older boy who was a snowboarder. He shared tales of sliding down the mountain and offered to teach Ben when they were both better in the winter of 2007. Unfortunately Bryan passed away before the winter of 2007 came and we blew our budget to go to Disney World celebrating Ben's NED. This year Ben and James are going to snowboard. Ben has waited 3 years to fulfill this dream and they even have their own Burton boards.

             

  As we enter into 2009 we are thankful to have 2008 under our belts and behind us. Although there was darkness in 2008 there was an even greater amount of brightness and light. We have found strength in our friends and family. We have been blessed with so many great people that we may never have met. We have had wonderful experiences and continue to grow as human beings. The children and families we have met remind all of us to not take life for granted. When I came down from the bedroom this morning Ben was already dressed with his coat on saying, "Come on Daddy. Are you going to take me to school? It's time. It's time." I pointed out that they didn't unlock the doors for 20 more minutes. Ben looks for the fun and joy in everything...even a grumpy dad.

12/27/2008

    Ben is in patient and his first night was uneventful. We are having a little bit of a hard time getting him to eat and drink. I reminded him this morning that the last time he stopped eating and drinking he had a great deal of difficulties. We are basically asking him what he wants and getting it. Once he picks something he has to eat it. His spirits are good and the nurses and residents are amazed at how much he has grown since they have seen him. It has been a few months for some of them. He and James have actually grown a little over 6 inches since Ben's diagnosis. We also commented with the nurses that we have seen several of them give birth and I think one of them may be pregnant with her 2nd. One of the residents graduates this spring and Ben was one of her first pediatric patients. She is a 3rd year resident that we absolutely love.

12/25/2008

  The last two days have been magical. I hope all of your holidays are going as well as ours has. Stacey and I stayed up late getting everything wrapped and set up. The magic worked when the boys got up. They waited patiently upstairs while we set up the video camera and added a couple of more presents to the pile. The best part was spending the day with our family playing with many of the toys the boys received. I actually managed to get a couple of surprises under the tree for Stacey.

              

  Tomorrow Ben will be going to Albany Med to receive his second round of MTP. After that he will be admitted to start receiving his Ifosfamide. The Ifosfamide will be given to him over the next 5-6 days. We are actually looking forward to being at Albany Med instead of Sloan. It's a little weird to be looking forward to being admitted to the hospital. We are comfortable with knowing we have an established routine. Several of the boys friends have planned play dates over the schools vacation. Ben will also be receiving some tutoring and with the school vacation Ben will be getting some visitors. We should also have great views of the New Year's Eve fireworks in Albany.

12/22/2008

   I woke up early this morning and checked on the boys. At 7 AM I gently woke Ben up by rubbing his back. He popped up quickly saying, "What time is it? What time is it?" He was almost crying as he said, "Am I too late? Am I too late?" I calmed him down and said everything was ok and that he would be on time for school. I went to go get myself started and to get breakfast moving. I came back to check on James and Ben. Ben was completely dressed and ready to go. I gave James his clothes and he started. Ben was on fire to get to school. I have never seen him so excited. He was in the car before James and I even had our shoes on let alone our coats, hats and gloves. Ben was thrilled even made rock hands as he went out the door. I heard later that the kids were surprised and thrilled to see him. The day went well. He has a great deal of catching up to do, but, we are in good hands. He will be working over the Christmas break on it. Monday was a great day.

          

    I wanted to tell you a story about a breakfast that Ben and I shared together in NYC at the Star Diner. As we ate Ben looked at m across that table and told me he had something serious to talk about. He looked me straight in the eye and said, "Tell me the truth about Santa. Does he exist? Is he real?" My immediate thought was, "Why couldn't he have asked me about sex?" Even Mrs. Satterlee couldn't help me with this one and I wondered if Stacey had told him at some point to "ask his father." As I was thinkinking about my answer he leaned forward and continued to look me in the eyes and said , "TRUTH." I told him, "Some people don't believe in Santa Claus. Most adults and many children stop believing in Santa just like in the story Polar Express. I believe in Santa. I have seen Santa and I will believe in him for the rest of my life." He seemd to agree with me and said, "I feel sorry for the people who don't belive in Santa. They've lost somethine magical." The boys are obviously wrestling with this because I had the exact same conversation with James today. I realized the magic was changing for my little boys and that this would probably be the last year of real childhood Christmas magic. I know they will both believe in Santa just not with the innocence of a child.

      

     While the conversation was going on with Ben I realized that indeed I have seen Santa and that I would even pass an FBI lie detector test on this one. Santa is the spirit of Christmas. He is the spirit of giving. In 2006, after Ben's diagnosis, as we approached Christmas I don't think I would have given Ben the same answer. It was going to be a lean Christmas. We had blasted through savings and our flexible healthcare spending account. Santa showed up on our doorstep in the guise of Mr Daly from our church carrying bags of toys the King's Kids performance group had purchased with money they raised from their plays. Santa showed up in the guise of others who found the time to help us decorate. Santa has shown up throughout the past 2 years with lemonade stands. Santa has shown up with dinners. Santa has shown up with a call or hug. Santa showed up today in the guise of a check for $1,000 in the mailbox alongside a bill from a hospital for $1400. Santa showed up as Dr Kanwar at Albany Medical Center who spent hours and hours completing the paperwork and doing what needed to be done to assist Dr Pearce with getting Ben home for Christmas. Without his efforts my Christmas wish would not have happened. Look around Santa is all around us and he is with us throughout the year. One of my favorite Christmas songs is, "Why can't everyday be Chrstmas?" and the message in the song is about giving and spreading happiness and joy everyday of the year not just Christmas day.

           

   To paraphrase and old newspaper editorial, "Yes Ben and James there is a Santa Claus. He exists as cetainly as love and generosity and devotion exist, and you know that they abound and give to your life its highest beauty and joy." By the way I am hoping that since I have done the Santa talk that Stacey gets to do the sex talk. She should have some time to work on that one. I think there are even books written on that one.

12/21/2008

   The morning started out with a call to Stacey to see how things were in NYC. She and Ben were getting ready to go with a group from the Ronald McDonald House to the Hard Rock Cafe for breakfast. It was going to be a fun morning for the two of them. She thought they would end up back at the RMH around 11:30 AM. So there was no real rush for James and I to get on the road. While James was getting dressed and GrammaMac was getting him breakfast I cleared the snow off the driveway and walk. I loaded the car with the few supplies we needed for the trip. Last weekend when we had brought fire wood from Uncle Rick's house the rear tires seemed a little low. When I had the oil changed and wipers replaced last night the folks at JiffyLube also topped off the washer fluid and checked the tire pressure. Even though everything was fine I double checked the washer fluid and checked the tires myself. Around 9:30 James and I piled into the minivan and headed out on our journey. As sson as we were on the NYS Thruway heading towards NYC I knew it was going to be a fun journey. The road spray was making the windshield dirty faster than I could use the windshield washer to clean it. I was glad the new wipers were in place and I had plenty of washer fluid, but, Janes was not really satisfied with the slight level of dirtiness I was maintaining on the window. We were about 40 miles into the trip when I noticed a slight pull to the left and a very spongy return to the center of the lane. I pulled into the right lane and continued to drive at the speed limit. Thinking I would stop at the next rest area to see what was going on. In a few minutes a car passed me with a woman pointing at my drivers side rear tire and making hand motions that confirmed the tire was going flat. We made it to the next rest area with it just starting to cause very noticable vibrations. We went inside and I looked ofr fix-a-flat spray and got james a hot chocolate. They didn't have any so I went to the air pump to fill up the tire and hope to get to the next exit. At the air pump I needed quarters so I went to the little hut that houses the gas pump attendant to get change. The pumps were mobbed. People were buying window washer fluid left and right. There was a line of 6 people ahead of me. It went rapidly and I noticed they had a can of fix-a-flat stuff on a shelf. The attendant was very surprised I wasn't buying washer fluid. The fix-a-flat stuff seemed to work although it didn't fill the tire the amount it should have. As I was doing this all I could think of was my Uncle Jack, who owned MidTown Tire in Troy, telling me once how much he hated this stuff. He always said, "It didn't really work and it makes a real mess when you have to replace the tire on the rim." That was a long time ago and I was hoping they had improved the formula. I drove around the parking lot as the directions said and checked the tire. After putting in a little more air James and I returned to the highway. I just wanted to get to the next exit and go find a tire center of some sort. When I was inspecting the tire for nails, etc. and using the fix-a-flat I noticed not one, but, bumps or bubbles on the sidewall of the tire. One was the size of a quarter and the other a half-dollar. They were soft and I knew that was not good. We headed out onto the highway and I found a slow moving RV with car in tow to follow. My thought was that the tire was fragile and I needed to watch the speed. I also wanted to make sure James was not afraid. There was a slight vibration in the car and he told me it was making him think "bad" thoughts after I told him to think "happy, good" thoughts and not to worry. Inside I was praying please God just get us to a place I can buy a new tire. I have had a blow out before in a vehicle so I know I can handle the explosive loss of control, but, I also never wanted to go through it again. James and I took the next exit, but, we couldn't find anyplace open that would be able to replace out tire. We stopped at a Dunkin Donuts and I asked several people and they had no answer. We were about halfway between Albany and Kingston. I decided to head towards Kingston. It's big enough that there has to be someplace there that would have the tire we needed. My GPS unit was not very hopeful. It kept telling me the nearest place was in Wappinger Falls. I called my sister Janine and asked her to look online and find someplace. She gave me the address for a Mavis Disount Tire and I put the address into the GPS. We were 25 miles away and James counted down the miles. We made it and they even had the exact tires on the minivan. While it was replaced James and I went to Barnes and Noble bookstore that was across the parking lot. He read quietly and I ended up purchasing a Marvel Comic Character Encyclopedia book for him. We ended up back on the road around 12:30 PM. Aside from some bad traffic the rest of the trip was uneventful. We arrived at the Ronald McDonald House around 3:30.

          

     We had out last dinner at RMH and said our goodbyes to some of the families we had befriended. As we were exchanging contact information with one of them from Buffalo, NY the Dad said to me, "Congratulations, I hope we never see you here again. It's kind of like getting out of prison isn't it. It's nice here and they try, but, it's not the same as being home." I told him I knew exactly what he meant. I wasn't even the one who was there all the time. They are expecting to be down there until February. We wished them well and told them we would look them up when we went out to Buffalo to visit Stacey's Mom and sisters. I packed the minivan while Stacey cleaned the room and we were ready to go around 7:30 PM. Aside from some traffic we had an eventful return home. We arrived around 11:30 PM. It was great to be home and in our own beds. It even looked like there was going to be school on Monday so I knew Ben would get one of his Christmas wishes and I already had mine. I actually woke up during the night and went and sat in the boys room for a little while just looking at them and listening to them breathing. Sunday was going to be a good day.

12/20/2008

   After a very long day Ben is home and we are all sleeping in our own beds tonight. I'll tell you more tomorrow.

12/19/2008

  Well, the weather outside is frightful. On my way home from work the windshield on the mini-van was icing up. So I stopped at Jiffy Lube and had them replace the wipers and do a necessary oil change aqnd fluid top off. Ready to go I started heading towards home to get James, change my clothes and grab some supplies. Stacey called to tell me that it was snowing in NYC and near white out. While I was speaking with her Miss Kathy called to let me know she would watch James so I didn't have to bring him with me. I pointed out that my Mom was at our house so James could stay with her. Miss Kathy asked me to be careful and not do anything foolish. I promised I wouldn't. A couple of minutes after that call my brother Rob called from Ct. to tell me that it was really bad down there and to reconsider making the trip tonight. I was beginning to think the universe was trying to tell me something or at least some of the people who love us. As I walked into the house my sister Janine called me to tell me that a wine tasting she was supposed to lead tonight was cancelled and that she thought the roads were horrendous. Before she could ask me to wait until morning to head to NYC I told her I had already received the message. When I told James we were waiting he was very disappointed, "Come on, you and I  can make it. I know we can. We make a good team." I explained to him that we did indeed make a good travelling team, but, that I was more concerned about the other drivers. He accepted it and we played in the snow for a little while. We are planning on heading out in the morning and then coming home in the afternoon. When I called Stacey to tell her we were waiting she told me what Dr Pearce had said when she called her. Dr Pearce called and said, "Bring Benjamin home. We need him up here." Albany Med had already contacted the manufacturer of the drug and it will be arriving there on Monday for Ben to receive on Tuesday. Ben is hoping beyond hope that North Colonie has school on Monday. He really wants to see all of his friends.

12/19/2008  Part 1

   Dr Pearce and Albany Med have come through with my Christmas wish. Ben will be starting the MTP chemotherapy in Albany next week. Stacey is coordinating with Memorial Sloan in NYC to get the necesary supplies and things in place for next week. I will be racing the winter storm that is hitting the Northeast today to get to NYC by tonight.  I am hoping to be leaving for NYC in the next couple of hours. The game plan is to leave NYC tomorrow afternoon to come back to Albany with Ben.

12/17/2008

  We have not heard yet from Dr Pearce about how the hospital meeting yesterday went. It is likely the meeting was late in the day. Stacey called the hospital, but, Dr Pearce was out today. Hopefully we will hear tomorrow. Stacey and I have decided that we will have Ben home for Christmas no matter what. If we have to he will receive the MTP at Sloan next Tuesday and I will bring them home for Wednesday and Thursday then I will bring them back so he can be admitted for the Ifosfamide and MTP on Friday. The adventure continues and we will adapt and do what needs to get done.

            

  Ben was home for the weekend and went back to the Ronald McDonald House in NYC Monday night. He was crushed that school was cancelled on Monday. I think he was the only kid around here that was disappointed. He continues to do well with the latest treatments and the doctors are pleased with his progress. After his bilateral thorocatomy in October he was telling everyone that he is a two time cancer survivor. The tumors were removed and we are holding that close to our hearts and continue to believe that he is NED and that the chemotherapy is doing what it is supposed to do. We are so thankful for all of the help and support from you. We never would have made it through this season travelling back and forth to NYC and staying at the RMH without the Ben Fund. The best Christmas gift Stacey and I can receive is to have Ben and James at home for Christmas. We were even able to get the tree up over the weekend. It won't take long to wrap the presents and we are ordering Christmas dinner out.

12/13/2008

 The weather was getting worse and worse while I waited for Ben and Stacey at the train station. It was pouring rain and starting to turn to real freezing rain. I called Stacey to see where they were and she said that they were stopped on the tracks somewhere near Hudson, NY. The train was stopped because there were trees down and laying across the tracks. The train ended up stopping twice and crawling for long sections of the trip. They could actually here a few trees scrape along the train as they passed. On the way home from the train station I stopped to help a State Trooper pull a huge branch off of Rt 9 near Siena College. It took all of our strength to get the road cleared. We also came across Police and Fire engines who had responded to an accident involving a car and a telephone pole. We were very happy to get to our neighborhood after midnight. As we approached we realized that there was no power in the neighborhood. As we drove through the house it was eerily dark and quiet, although the trees were stating to look really pretty. We came around the turn approaching our house and were realived to see that we stiil had power. A couple of neighbors did too. As we went to bed we could hear large branches breaking off trees and saw the brilliant flashes of power transformers shorting out in almost every direction from our house. Ben and Stacey tried to wake James to surprise him, but, he was slleping soundly. Since he was sleeping in our bed Ben crawled in with him. We all thought it would be a great surprise for James. After 1 AM I was awakened by the alarm on my backup battery unit that our computer is plugged into. Our power was out. One of those big flashes or cracking branches was the end of our power. I looked outside and there was substantially more ice build up on the trees. Our electricity returned around dinner time today. We managed to have a great time. Last night Ben and I slept in sleeping bags in front of a nice fire in our fireplace. We also were able to find open restaurants and cook on our gas range. The fireplace kept the house tolerable. I used power inverters to plug our sump pump into onr of the cars and let it run all night. If James and I had gone to NYC last night our basement would have flooded. James was really funny when he found out about the power inverter and that it converted the cars batter/DC power to AC like the house. He said, "You know if you had to use it on something you could have used it on the TV." Our phone stopped working so we had to use our cell phones. I used it to recharge the batteries for my cordless chain saw and cut up some of the wood from the fallen branches around our house. It's not that efficient, but, green wood helped augment the little seasoned wood that I had on hand or could find to purchase. While cutting up the wood a power company truck puled up and told to expect to have no power for 4 or 5 days. I called my brother Rick who heats his house with wood and he told me that he had more than enough wood for the season and I could go to his house in East Cropseyville. I decided to bring the boys to his house and we had a great time. The boys helped us split wood. James bravely climbed to the top of a big log pile. Ben tried his hand at splitting wood. It was hilarious to hear him shout, "Fire in hole." every time we hoisted the maul forcefully up in the air to bring it down sharply on the logs. The boys also had a great time with their donkey, miniature horse and multiple cats. Travelling along the roads we marvelled at the magnificent beauty of the ice covered trees as the setting sun made them look like jewel encrusted sculptures.

    

  Stacey and I decided that she and Ben should leave tomorrow or on the first train we could get them on to go back to the warm comforts of the Ronald McDonald House in NYC. Since it looked like the power was not coming back for a while we thoguht she may as well take James with her. My mother is staying with my brother Rob in Ct and she could ride the train from there into the city and stay with them. His next MTP infusion is scheduled for Tuesday morning. Since the power is back on they will be staying until Monday night. We are working with my brother to figure out when we get my mom into the city. Ben will get his MTP treatments on Tuesday and Friday this week in the day clinic at Sloan in NYC. If all goes as planned in Tuesday at Albany Med he will becoming home next weekend for real. He will get his MTP treatment in Albany on Tuesday before CHristmas and the his MTP and ifosfamide treatment on the day after Christmas.

           

  We know many people are are without power around us. Please pray for them and if you can check to make sure they are ok. It is really cold and we had the advantage of a fireplace and the right equipment to help us. I was kicking myself for not being prepared with enough firewood. Although there was plenty of green wood for me to cut up. It's better than nothing and my big brother came to our rescue.

12/11/2008

    I just want to give all of you a quick heads up. As I am typing this Ben has finished his last L-MTP-PE infusion for this week. I haven't told James yet that they are coming home for the weekend. I think it will be a wonderful surprise for him. If Ben is up to it he may even go to school tomorrow - unless the weather closes school. Stacey and Ben really need the break from NYC. Stacey called a little earlier this afternoon and asked if I thought it would be a good idea for them to take the train tonight and come home for the weekend. Of course I said yes. They should be leaving the hospital any minute and heading to Penn Station to catch the 8:20 PM train to Albany-Rennselaer Station. I will be heading over to pick them up around 10:30 PM. Our friend Kathy had been at the house to meet James at the bus stop and she has volunteered to stay here with James while I go get them.

12/10/2008

  I will start with good news and then head backwards in time and see where we end up. Stacey talked with Dr Pearce yesterday. The doctors and review board (or whatever it is called) will be meeting next Tuesday to decide/approve the L-MTP-PE will be able to be administered at the Children's Hospital at Albany Medical Center. As you all know that is the main reason Ben is getting the treatment at Memorial Sloan instead of in ALbany. Dr Pearce assured us that the meeting is mostly a formality and that we should not worry about the outcome. We like reasons to not worry so we will hand that one over to her. If we want to be back home for Chrstmas we need to have his treatments moved to Albany. Ben is scheduled to start his next Ifosfamide treatment next week. If we start it down in NYC we will be in NYC for Christmas. The treatments and side effects tend to follow patterns. We expect the Christmas would end up like Thanksgiving did and that he would make it through most of Christmas day and then have to be admitted to the hospital an Christmas night. If we start the Ifos at Sloan he would be expected to stay for the side effects here. After talking with Dr Pearce we are going to wait and have him admitted to Albany Med the day after Christmas to start the Ifosfamide. So next week may be our last week in NYC if the MTP can start to be given in  Albany Christmas week. James is really stressing out about where we will be having Christmas and when we will get the house decorated. Stacey and others have asked me what I want for Christmas this year. I have decided what I want most is to have my family together and to see the boys faces as they totally get into the holiday spirit. I know that we will be able to make it happen where we need to, but, the best place would be home. Ben is showing signs of being too mature to sit on Santa's knee. 

     

  A new term has entered into our vocabulary lately. We have started to refer to the Children's Hospital at Albany Medical Center as our home hospital. I know that when people travel quite a bit they say the best part of travelling is coming home. We have now spent time in many hospitals and we are all ready to get back to Albany. We know that everyone there is doing everything they can to get Ben back here. The other day Ben's calssroom was able to do a video call with him. Ben could only hear the class, but, they could see and hear him. The class was thrilled. They talked for a while and did story time. The kids were thrilled to see their classmate. They asked Ben all kinds of questions. WHen the call was over Ben's teacher Ms. Berger asked Ben if he had any questions. His immediate question was, "How is James doing?" The kids said he was doing well. Stacey and I think Ben worries about James. 

          

    On Monday I was having a bit of a down day - Ben and Stacey withdrawal. I managed to work it out so I could pick James up at 2:30 from school. As we were leaving the school building James was running a little ahead or me challenging me to a race to the car. As we passed an older boy he greeted James and turned to me and asked about Ben. As I walked along side him I told him that Ben was doing well and that we were hoping to have him home for Christmas so he would probably be seeing Ben around school soon. The 5th or 6th grade boy reached out and touched my upper arm with incredible love and said, "Don't worry Mr Stowell. Ben is going to pull though this. He is going to be ok. I just know it." The only words I could get out was, "Thank you." As he headed home James and I raced to the car. I asked James if he knew who the boy was and he wasn't sure. What a fine caring young man? His parents must be very proud of him.

12/7/2008

   Ben is doing well. In fact the whole family is pretty well. Stacey is fighting larangitis. Ben's counts have been very low, but, they are coming back up. I have been spending as much time as I possibly can in NYC to help her stay away from Ben. He doesn't seem to be catching the bug she has. James and I are down here agian this weekend. I am planning on moving this site to a new location so I stop having the issues with updates. Ben will be receiving his next round of MTP Monday and Thursday this week. Hopefully the folks at Albany Medical Center have gotten all the ducks in a row so Ben can start getting the MTP up in Albany. We will be finding out this week. If they haven't he will be getting his next Ifosfamide treatment down here and that means we will be having Christmas in New York City. Ben and Stacey are going to see the Christmas Spectacular at Radio City Music Hall tonight. Yesterday a group called the Candlelighters in NYC took us to Bloomingdales to get the boys pictures with Santa. Santa was amazing with all of the kids. He talked to them all about hope and believing. He closed by saying, "No matter what always believe in Hope." Santa spoke individually with each child and then presented them each with an ugly doll. The amazing thing is that Ben and James both really wanted a specific ugly doll and even though nobody said anything to anyone they both received the one they really wanted. A little Christmas magic in the Big Apple.

11/30/2008

The weekend was fun and somewhat relaxing. I managed to avoid the deep cleaning of the bathroom. We started work on the boys Pinewood derby cars for Cub Scouts. They are very excited and have very specific designs in mind. I can't wait to see how they come out. On Saturday Ben received notes from his "Chemoangels" - Angel Kasey and Angel Julie - it really put a smile on his face. I remember when I was a little kid how special mail made me feel. The notes are always simple and sweet. They usually talk about what they have been doing and wish Ben well. For instance Angel Julie was up late milking their cows. She lives on a farm. Angel Kasey talks about the fun she has with her children and Ben talks about her duck periodically although she has only mentioned it a couple of times. We do know that a couple of you have actually signed up for the program. It is a big commitment for a small act that brings an amazingly huge benefit for those receiving these loving notes every week.

         

Another amazing thing arrived in the mail. We signed James up for the Super Sibs program soon after Ben's diagnosis. We were, and still are, concerned about James and how he is getting through everything. James received a large envelop from Super Sibs. He was happy that he had some mail too. He took is into the family room to open it. All of a sudden he let out a big whooping yell - "It's a certificate of Achievement." He read it to us with the pride of someone who won an Academy Award. It was given to him for being a great brother during 2008. He was officially recognized for his wonderful achievement. We are going to have it framed and will be putting a photograph of it on James' page. He was dancing around with such joy and Ben joined into the celebration. It was really cool and actually brought a tear to the eyes of both of the adults in the room. I wish I had had the video camera ready or any camera handy.

 

On Sunday after church Ben and I went to our traditional breakfast at the Circle Diner. It was really nice. We ran into some friends from the baseball league the boys participated in. Ben and James both want to play again this year. I have been debating about the level of involvement I can pull of this year. Many of the adults involved with baseball last year have been encouraging me to coach again this year. After seeing them at breakfast I am strongly considering it. Ben really likes it when the staff at the Circle Diner recognizes him and says hi. It's kind of like walking into Cheers with Norm. We also had the opportunity to see Brendan's aunt and she came over to say hi to Ben. Brendan is Ben's friend from Siena who had osteosarcoma in his leg and had a scholarship to play lacrosse there. Ben thinks of him as a major inspiration and talks about him as a fellow survivor. It was nice seeing her. Brendan is 6'3" tall and Ben once told him that the doctors had told him that he was going to be 6'4" so Brendan could look up to him.

       

Ben is at the hospital today receiving his MTP treatment. His platelet count is still low so he is also receiving a platelet transfusion. Since there was no school today Stacey brought James with her. We didn't think Ben's platelets would be low enough to require a transfusion. I spoke with Stacey a little while ago and James is doing a great job in the playroom at the clinic in the playroom entertaining him, playing with other kids and the child life specialist. He hasn't complained once about having to be there. The boys and Stacey were supposed to be going to see "Hotel for Dogs" at 1:30 with the Starlight Starbright Foundation. Obviously we had to cancel. We will probably go tonight after going to Carrabba's for dinner. We try to eat there at least once a month. Apparently some of you folks do to. Remember we did the experiment about having you thank them for supporting Ben by asking to speak to a manager and telling the manager that you were there that night as a thank you for the Latham Carrabba's helping Ben out. Guess what? It worked. Thank you for thanking Carrabba's. Feel free to thank them again.         

Ben will be getting his follow up CT scan tomorrow so we can find out more about what is going on inside his lungs.

    

The weekend was fun and somewhat relaxing. I managed to avoid the deep cleaning of the bathroom. We started work on the boys Pinewood derby cars for Cub Scouts. They are very excited and have very specific designs in mind. I can't wait to see how they come out. On Saturday Ben received notes from his "Chemoangels" - Angel Kasey and Angel Julie - it really put a smile on his face. I remember when I was a little kid how special mail made me feel. The notes are always simple and sweet. They usually talk about what they have been doing and wish Ben well. For instance Angel Julie was up late milking their cows. She lives on a farm. Angel Kasey talks about the fun she has with her children and Ben talks about her duck periodically although she has only mentioned it a couple of times. We do know that a couple of you have actually signed up for the program. It is a big commitment for a small act that brings an amazingly huge benefit for those receiving these loving notes every week.

      

Another amazing thing arrived in the mail. We signed James up for the Super Sibs program soon after Ben's diagnosis. We were, and still are, concerned about James and how he is getting through everything. James received a large envelop from Super Sibs. He was happy that he had some mail too. He took is into the family room to open it. All of a sudden he let out a big whooping yell - "It's a certificate of Achievement." He read it to us with the pride of someone who won an Academy Award. It was given to him for being a great brother during 2008. He was officially recognized for his wonderful achievement. We are going to have it framed and will be putting a photograph of it on James' page. He was dancing around with such joy and Ben joined into the celebration. It was really cool and actually brought a tear to the eyes of both of the adults in the room. I wish I had had the video camera ready or any camera handy.

 

On Sunday after church Ben and I went to our traditional breakfast at the Circle Diner. It was really nice. We ran into some friends from the baseball league the boys participated in. Ben and James both want to play again this year. I have been debating about the level of involvement I can pull of this year. Many of the adults involved with baseball last year have been encouraging me to coach again this year. After seeing them at breakfast I am strongly considering it. Ben really likes it when the staff at the Circle Diner recognizes him and says hi. It's kind of like walking into Cheers with Norm. We also had the opportunity to see Brendan's aunt and she came over to say hi to Ben. Brendan is Ben's friend from Siena who had osteosarcoma in his leg and had a scholarship to play lacrosse there. Ben thinks of him as a major inspiration and talks about him as a fellow survivor. It was nice seeing her. Brendan is 6'3" tall and Ben once told him that the doctors had told him that he was going to be 6'4" so Brendan could look up to him.

       

Ben is at the hospital today receiving his MTP treatment. His platelet count is still low so he is also receiving a platelet transfusion. Since there was no school today Stacey brought James with her. We didn't think Ben's platelets would be low enough to require a transfusion. I spoke with Stacey a little while ago and James is doing a great job in the playroom at the clinic in the playroom entertaining him, playing with other kids and the child life specialist. He hasn't complained once about having to be there. The boys and Stacey were supposed to be going to see "Hotel for Dogs" at 1:30 with the Starlight Starbright Foundation. Obviously we had to cancel. We will probably go tonight after going to Carrabba's for dinner. We try to eat there at least once a month. Apparently some of you folks do to. Remember we did the experiment about having you thank them for supporting Ben by asking to speak to a manager and telling the manager that you were there that night as a thank you for the Latham Carrabba's helping Ben out. Guess what? It worked. Thank you for thanking Carrabba's. Feel free to thank them again.

         

Ben will be getting his follow up CT scan tomorrow so we can find out more about what is going on inside his lungs.

 


  Our plans for fun this weekend took a major hit. In addition to Ben being admitted to the hospital late Thursday night and still being inpatient Stacey and James were hit with some gastrointestinal bug that incapacitated them Friday night. They have kept away from the hospital and I have been staying with Ben. I just talked with them this morning and they are doing better. It seems to have passed. Ben and I haven't showed similar symptoms. We think it was a bug that worked its way through the area. I wish I had grabbed a change of clothes for myself before heading to the hospital with Ben. Sorry I haven't updated in real time as this was going on. I have had connectivity issues with the updates. Everyone is doing well now. Ben just received platelets this morning. His counts are still low. We are seeing signs of thrush or mucusitis in his mouth. He has to swish a nasty tasting liquid in his mouth to help control it. You may recall that he has faced  similar mouth issues before. It caused a great deal of pain when it went out of control. He hasn't had any fevers since my last update. He has come close, but, not crossed the line. Today he woke up with a cough that has me a little concerned, but, it may be related to the mucusitis because his lungs sound clear. Other than having to force him to eat and rinse with the nasty liquid his attitude and outlook are good.

11/28/2008

   Last night around 8 pm, after a truly wonderful Thanksgiving day, Ben spiked a fever of 102.6 degrees. We called the after hours clinic number and were told to take him to the Memorial Sloan Kettering Urgent Care Walkin facility. Upon arrival he was given antibiotics and his fever was still just under 102 when he was admitted to the hospital. His fever broke between 3 and 4 am. It then returned around 9 am. His blood counts have tanked. We were not surprised that his counts dropped. We actually thought that they would drop on Wednesday and we were just hoping to get through Thanksgiving when they didn't. Well he made it through the day. What surprised was that we were starting to think he was past the danger point and the drop was much more rapid than usual. We had been feeling his forehead, neck and tummy all day and never felt it rise. We used the thermometer once or twice and everything was normal. We could visually tell his counts were dropping. He was absolutely exhausted and getting uncharacteristically cranky so we used the thermometer. We are not sure how this is going to impact the L-MTP-PE treatment, but, it affirmed that we definitely don't want to be taking him back and forth on the train between treatments. I will update tomorrow about the fun parts of the day.

11/27/2008

   We are extremely thankful this year for so many things. We have come to learn just how fantastic Ben's medical team is during our exposure to other families and hospitals durng this journey. We are so thankful for Dr Pearce and all of the staff at AMC. We are thankful for all of you who have given us so much during Ben's treatment. We have had so many things happen that have managed to keep us going that I cannot possibly write them down here. We hve tried to thank everyone, but, it is just impossible. You have lifted our family and carried us on your shoulders. I know that there is no way that I could not have made it through these past 2 years without each and every one of you. We are thanful for every act of kindness large and small. Benjamin and the Green Drakkoman have an army of warriors supporting them and we are thankful that for each and every member of that army.

            

   I will tell you about our Thanksgiving day adventures in the 11/28 update.

11/25/2008

   Ben received his neulasta shot this morning. He and Stacey are heading to breakfast at the Star Diner on 1st Ave near Ronald McDonald House when they are done. I think that diner has become our family's favorite breakfast stop in the city. Perhaps a new tradition is forming. When Ben was released from the hospital on Monday he was given a backpack that has a battery operated pump and was giving him fluids. He will probably be able to stop carrying the pump by tomorrow. There was a little blood in his urine and they want to make sure he is well hydrated and flushing out his kidneys and bladder. We are looking forward to a fun  Thanksgiving in the city.

11/24/2008

   Ben and Stacey left the hospital today. They are back at the Ronald McDonald House and he will be going to the clinic tomorrow for his L-MTP-PE treatment. Stacey told me that they just call it MTP down there. That's easier to type so I may start calling it that too. It took forever for Ben to be discharged today. Apparently they didn't tell everyone that was supposed to be notified and the hospital called the house because they couldn't find Ben in the hospital and were concerned. I guess the paper work caught up on the floor because Stacey checked and they were indeed discharged. James and I are heading down on Wednesday. It will be nice to be together for a few days. Ben will be getting the MTP on Friday. A friend of ours will be taking Mocha for the weekend. We also want to thank you for the support you have been giving us. We have had some surprise visitors in NYC and we know that a couple of you are planning on coming down to spend time with Ben and Stacey during the week. We also received a couple of gift cards for New York City based food and food shopping. The advice of using the Amtrak rewards program is going to pay off after our next trip. The cards and things Ben has received at the RMH have made him feel relaxed and at home. We have received a great deal of advice on NYC and it has really helped us feel comfortable there. We were even invited to join and "invitation only" NYC insider newsletter and web site to keep us informed on the happenings in NYC. The boys have both decided that they really like city life. It is fun to watch them because they really do seem to fit right in - even with a Red Sox shirt on. Ben even had someone shout to him, "Hey, Go Red Sox. The Red Sox nation is everywhere." when we were in Times Square. 

11/23/2008

 I am sitting here next to Ben and he is watching a really awful cartoon called "Chowder." It's 8 year old boy bathroom humor at its worst. I suppose if I was 8 years old I would be enjoying it. Ben had a great night last night and I must admit I really miss being by his bedside on the overnights. Our laptop is acting a little flaky and I should probably rebuild it. The doctors down here are thrilled with the way he has handled the chemotherapy. I am really proud of how he has handled himself. It has not been easy for Stacey either, but, she has done a great job of adapting and creating a routine here. When I was down last time we were able to get chair massages at the RMH while Aunt Carol sat with Ben. I signed Stacey up to get one today while I am with Ben. RMH is nice because James can be in the playroom or the computer room while she is getting it. He's really supposed to be directly supervised because he is only 8, but, he is so well behaved we can get away with it.

            

  Yesterday I went with James to the Bronx Zoo on a trip from the Ronald McDonald House. I think it was sponsored by the NYPD or NYC because we travelled by police bus and were met at the Zoo by a police escort to go to a seperate parking lot. The zoo was practically empty and it was a great time. James kept pointing out things he wanted to show to Ben. He viewed it has a scouting trip to share later with Ben. James and I will be heading home later today.

      

  Ben will be getting out of the hospital tomorrow and will be back to being an outpatient down here. He is looking forward to it. We have been sharing all of the postings on the web with him and he is thrilled that he has actually been getting mail at the Ronald McDonald House. James decided he wanted to move down here with Ben and stay in the RMH, but, we pointed out that he really needed to stay home with me for school. Stacey's mom is oing home this week and James and I will be holding down the fort alone until my mom comes up from Florida. She should be getting up north around 12/10.

         

   Everything is going really well and we are so thankful for all of the support you have been gving us.

11/18/2008

  Ben is doing well. He seems to be tolerating the chemotherapy really well and he feels comfortable with the nursing staff and doctors. We are working out the details on getting him tutoring in NYC lined up so he is keeping up with school work. Stacey has been doing the work with Ben that his teacher sent with him. I will be bringing down more work from her over the weekend. Stacey and Ben actually like doing it because it breaks up the monotany of the hospital. They have had a couple of visitors from up north that have helped as well. Ben's great-aunt Carol has been staying down there off and on as well and that has given Stacey the chance to get out of the hospital and sleep at the Ronald McDonald House.

            

   The weekend was wonderful. James and I headed down to NYC on Friday on the 4:15 PM train and we returned on the 7:20 PM train on Sunday. In those 2 days we managed to cram a great deal of fun as well as some downtime. On Saturday we went to Times Square and spent several hours at Toys R Us. Ben wouldn't go on the 4 story Ferris wheel, but, James and I did. The boys were great. They looked at all the toys with amazement. We bought a single Nintendo DS game that Stacey had promised Ben as a reward for being exceptionally brave when we first in the NYC and he had to get have his port accessed by a new nurse. Then we walked through the store and they marveled at the shear volume of toys. I saw the largest stack of Wiis I have ever seen. If anyone needs to get a Wii for Christmas and can't find one up here let me know and I'll pick 1 up for you next weekend. The offer is only good for the first 3 people - I can't fit more than 3 in my suitcase. They had a big display of a toy called Robot Galaxy. It is like a "Build-A-Bear" for Robots. The boys really liked it. They picked out all of the pieces and built there own talking robots and then they launched them through the rings of Saturn into Cyberspace. They have to wait until Christmas to receive them, but, they can plug them into the computer and go online and play games and interact with a whole cartoon Robot Galaxy. It's kind of like Robot Webkinz. I wouldn't mind buying a franchise based on what in NYC. They had at least 6 people that couldn't help kids make robots fast enough. I told the boys these were presents from GrammaMac. So when you read this Mom you know it was really my idea they be from you.

             

     After Toys R Us we headed towards the M&M store. As we headed through Times Square we walked to a perfect vantage point to see the "Naked Cowboy." I am not sure why, but, Ben had on his list of things he wanted to do in NYC one of them was to see the Naked Cowboy. We looked at him from afar because there was huge number of people around him and television camera crew. Ben decided the crowd wasn't for him and I couldn't figure out if there was actually a line to pose with him. When we were in the M&Ms Store the boys just stood in awe of all the merchandise and the place was packed. One of the things they have there is an M&M Mood Detector that basically tells you what color M&M you are. We waited for 15-20 minutes for the boys to get up to stand before the machine on a special metal M&M mat with a large flat panel display and funnel shaped detector over the giant silver M&M mat. As they stood there the machine asks questions and tells them to do things. The boys played along and James ended up doing the Hockey Pokey.  The machine told James that he was a chocolate/cream M&M which is one that is both light brown and white. It said that he was like chocolate and always went well with other things - "Everything is good with chocolate." Ben was a different matter it. Asked him a couple of questions and asked him to do a couple of things and the declared him to be the very rare white M&M. When it described him it said, "You are the kindest person who has ever stood on that spot." The people in line actually said "ooo" and "awe." Up until that moment it looked like the machine was basically randomly picking colors and saying fortune cookie like sayings. Stacey and I just looked at each other and as we walked away she said, "Do you think there is actually somebody manning that thing?" I said, "I don't know." Even random things can have profound meanings.

             

    We went to the Hershey store and then back to the Ronald McDonald house for a wonderful dinner that was prepared by a group from a company called Situs. They handle commercial real estate properties and issues. They put on a lovely dinner and even did a scavenger hunt for the kids after dinner. There were even a couple of their kids helping out. I thanked several people in the group as they served the dinner. As we were eating I went up to one of the folks and asked them if they new of a good Jewish deli that had matzo ball soup. Stacey loves matzo ball soup and her favorite source was in Buffalo and they closed. The woman and her husband told me they would ask around, but, they lived in the area and had some ideas. We had pretty much finished and the boys had headed off to the playroom when she came over to our table with a napkin. She had the name, address, and phone number of a deli 2 blocks away and said ti was unanimous throughout the group that this was the best in the neighborhood. She had also put her phone number on the napkin and told Stacey that if she needed absolutely anything while were down there to give her a call - "get your nails done, etc." She said, "I have 3 kids of my own and I can't even imagine." We thanked her and she went back to serving food. Stacey and I looked at each other and Stacey said it first, "We used to be on the other side of those tables." I replied, "Thank God there are people to be on that side of the table." The world can be very cynical and many times we all come across situations and people that make us question things. If there is one thing I have learned from all of this it is that the world is full of amazing loving people.

 

11/15/2008

The trip to New York City was uneventful. We followed the advice of my Tomtom GPS device and ended up going through New Jersey and took the George Washington Bridge. The boys decided that if George Washington was alive he would be very proud of it. They marveled at the nighttime skyline as we crossed the bridge. They were amazed that it was possible to merge at least 8 lanes of traffic into 3. It took us 20 minutes to get through the toll booths and across the GW bridge. On the other side the GPS was very confusing because it thought we were on the top level of the bridge and we were on the lower level. I ended up in the far right lane when the exit I really wanted to take was a left side exit. It was easier and safer to just take the wrong exit and let the GPS recalculate our route. Stacey and I are looking forward to meeting the Doctor and getting moving on this stage of treatment. As we came out from the George Washington Bridge and the city really came into view Ben looked around and said, “Oh….my…..God.” It was very cute. He enunciated each letter and said each word with equal emphasis. We asked him what was up and he replied, “I am in New York City. This is so cool.” We ended up driving past Yankee Stadium and James pointed out to Ben that he needed to be quiet and look closely at the stadium because this might be the last time they ever were able to see it. We made our way to the Ronald McDonald House on East 73rd st and after unloading everything I put the car in a parking garage. When we left the next evening the parking cost $56. Our room at the RMH is a very basic hotel room with no art work on the walls. We are responsible for all aspects of cleaning it and the linens are our responsibility. We ended up getting our own linens and we brought our own pillows. It is a very nice place filled with love. When we arrived we walked into the lobby and were taking in the whole entering experience. There is a walkway on one side of the lobby, opposite the main doors, that is enclosed in glass. We looked up to see a boy around the boys age shouting through the glass, “Ben…Ben…It’s really you…Ben…wait right there I’m coming down.” Ben and James were beside themselves to actually see a familiar face. It was one of the kids they have played at Gilda’s Club and seen at Albany Med. He is the brother of a little girl named Ila. Howie and the boys had a great time exploring the facility and Howie showed them around. Unfortunately, Howie has spent a great deal of time down here. Ila has neuroblastoma. They left for home the next day while we were at the hospital with Ben.

         

   Ben was able to go the Natural History Museum and had a great time exploring the city. He has spent most of his time at Sloan Kettering. The actual administration of the L-MTP-PE takes about 30 minutes. The rest of the time is spent waiting for the drug to come up from the pharmacy and watching him for side effects. He has had mild fevers, chills, rapid heartbeat (tachycardia) and rigors each time. Rigors are like really bad shivering. His mood is great and the side effects tolerable and short term. They tried treating them with Benadryl and Tylenol and they were even less yesterday - the 2nd time. On Monday he will be admitted to Memorial Sloan Kettering for the addition of the Ifosfamide and Etoposide. He will only receive those 2 drugs for 6 days, once a month. Everyone seems to be in a good mood although we are all missing each other during the week. James’ teacher said she has seen a slight difference in his performance at school this week. I have no doubt that we will all start to get into a routine soon. I am going to work on telecommuting as an option for me to get more time in NYC.

        

  When James and I came down last night on the train his ticket was free. It is definitely cheaper to come down on the train than to park for several days. Our train ride was uneventful although it is fun to experience things through your children’s eyes. James and I walked several blocks before getting a taxi. He really enjoyed walking through the city. Even thought the sidewalks were very crowded he did an excellent job of following me through the crowd. I didn’t have to worry about him. We had a great NYC taxi cab ride. The kind where it is almost an amusement park ride as the driver races the red lights and finds the fastest lanes. The boys were a little disappointed James and I didn’t get into the “CashCab.” “Cash Cab” is a TV quiz show on Discovery Channel that takes place in a NYC taxi cab as it brings people to their destination.

           

  It’s a rainy day down here and we are about to go out and head for Times Square

11/11/2008

  Quisk status report. We signed the paperwork yesterday to allow Ben to start receiving the L-MTP-PE today. Yesterday was a brutally long day and the results of his blood tests came back too late for him start receiving the drug. He experienced a fever and bad chills. He also had a tachicardia, which is a very rapid, slightly erratic heartbeat. The side effects were not unexpected and did not fall into the severe category so treatment will continue. It is kind of amusing to me in a very weird and dark way that the side effects he experienced would have had a parent normally close to panic and rushing their child to a hospital. In August of 2006 we would have been doing that. Now we look at it in a very matter of fact way.

  

  Tomorrow he should be starting Ifosfamide and Etoposide. He will be admitted to receive them. I have not had that confirmed yet. The last I heard they were having difficulties finding him a bed. You may recall that the Ifosfamide had a really major effect on the tumors over the summer. We decided that since it worked we would agree to give him more. It is a little scary because that is the drug that he had some issues with neural toxicity with the first time he took it. It caused his mood to darken severely and he was actually briefly comatose from it. The second and third time he received it the symptoms were less and he went though mild manic and weepy stages. There is a lifetime maximum for this drug and we are going to look into how close Ben is to reaching that amount. It will be a tough decision if he hits that number because that is the one drug we know for a fact had a positive effect on the tumors in his lungs. I do know we have the absolute best doctors in the US, if not the world, discussing his case and giving us recommendations. When we signed the paperwork it said that there were only 23 slots at Sloan Kettering for "compassionate access" to the L-MTP-PE and Ben is now 1 of those 23.

     

  I still haven't heard if he was admitted or not. I guess they have a full house.  The Ronald McDonald House has close to 100 rooms and it is my understanding that they are almost always near capacity. I met a family from Barcelona yesterday. I will tell you all more about the less clinical parts of the trip later.

11/9/2008

   We are about to leave for NYC. We made all of our last minute purchases of food and supplies. Our bags are backed and the car is loaded. We decided to drive down into the city for this trip. After we get setlled tonight I'll post more details. The adventure begins another chapter.

11/8/2008

  As I sat down to right this entry Ben came up behind me and reminded me that I will not be able to see him on Tuesday, Wednesday, Thursday and probably Firday so I needed to stop what I was doing and go play with him.

11/5/2008

  California Cousin Betty arrived today and the boys are loving having another visitor from the west. She pointed out that she hadn't seen Ben standing up when he was in San Diego. She is staying with us until Tuesday. Stacey's Mom is coming on Saturday to stay for a while so the 2 of them can catch up while we are in NYC. The game plan now is that Ben, James, Stacey and I will drive down on Sunday. There is a parking garage near the Ronald McDonald House. Of course Stacey and Ben will be staying therre and James and I will head home on Monday night. There is a real sense of anticipation in our house. Everyone is working real hard to be nice to each other and cram in a lot of fun. We are all going to miss each other terribly over the next 9 weeks, but, we are thrilled that Ben and Stacey aren't heading to Houston, TX.

11/4/2008

   

 Today is election day and the boys are thrilled that there is going to be "First" or record set with either candidate winning tonight. I think one of the magic things about being 8 years old is looking with wonder at the world around them. We are either going to have the first african-american President or the oldest when elected for their first term President and the first female Vice President. It really is a neat idea that we can change our government in such a peaceful manner. That's enough politics for here although Ben likes to inform everyone that he voted for Barack Obama on "Kid's Vote" on Nick.com. I am not sure who James voted for. I do know he was leaning towards the McCain ticket a little bit because of 2 records being set if they won. He did say he "liked Obama's policies better." He also informed me that who you vote for is a "private matter."

                       

  It has been confirmed that Ben will start receiving the L-MTP-PE on Monday at Memorial Sloan Kettering in New York City on Monday November 10th. We don't have the confirmation yet from the Social Worker that we will be able to get in the Ronald McDonald house there so we are anticipating that and I will update tomorrow. Ben will be receiving the chemotherapy as an outpatient. He will be receiving it every Monday, Tuesday, Wednesday and Friday. Ben will have Thrusdays, Saturday and Sunday off. The infusions will probably take between 2 and 6 hours each day. He is going to lose his hair again just as it is coming back. The other expected side effects are tiredness, weakness, appetite suppression, taste issues and increased immune system vulnerabilty.  He is expected to receive this treatment for the next 9 months. We are hoping only the first 9 weeks will be done at Sloan Kettering with the rest being done at Albany Med. It is going to be a long 9 weeks. Ben and Stacey will be living in NYC for that time. We can't expect Ben to commute from here 4 days a week. The Ronald McDonald House only charges $35 a night and that is less costly than the train. James and I will try to go down on as many weekends as we can. We are working with Ben's teacher to keep him on track and I may try to set up some video conferencing technology to keep everyone in touch. We are also anticipating spending Thanksgiving in NYC and maybe Christmas.

11/3/2008

 

It has been over 2 years that we have been maintaining this site and providing updates through it. Every so often I just seem to go through periods of time that it is actually hard to sit down and write the updates. It's an avoidance issue. If I stop writing updates maybe it will all just go away - like waking up from a scary dream. It usually happens during the in between times when we aren't actively fighting the monster within Ben. We are back in the fight so here I am typing away. I have decided that I will update everyday even if it is just a sentence or 2 and that way you will have less of these huge summary updates to read.

          

  We were afraid that Ben was not going to be able to go Trick or Treating last week. We didn't know what his treatments plan was going to require or how he would be feeling. On Monday last week the boys had a wonderful surprise. After school they put on there costumes and Miss Kathy took them to the Bobrow Confectioners warehouse. It is a bulk and wholesale candy distributor in Clifton Park. They gave the boys tricker treater bags and let them loose in the warehouse. They had strategically placed open boxes of the bulk candy and as they toured the warehouse the boys took handfuls of candy. They also were able to pickout wrapped candy and the guys at Bobrow gave them a big box of candy that they had selected for them. The boys talked about the warehouse for days and still will share the adventure with anyone who will listen.

           

  We had another treat this week when a long time family friend, Nancy, came to visit. She was back in the area from New Mexico, I mean Arizona, catching up with old friends. We had a great time sharing dinner with her. She wanted to take us out to dinner, but, Stacey felt the need to cook that night so we ate in. They boys were their usual kid selfs and took pleasure in showing off for her. We also were able to get in some nice adult time with her too.

          

  As I mentioned before the boys also attended the largest, best Halloween party they have ever been to last week at Gilda's Club in Latham. It was called NoogieFest and was absolutely amazing. Every corner of the faciltiy was decorated and their were activities inside and out - games, photo booth, live music, karaoke, Wii, bouncey bounce, haunted house, crafts, food, candy to eat there, candy bags to go home. It was absolutely amazing and the volunteers and staff at Gilda's Club who pulled it off are angels on this earth. Ben and James brought their friends Noah and Aiva. I think all 4 of them will remember the party the rest of their lives. I don't know how many times the boys went through the haunted house. The college kids inside kept coming up with new ways to scare them and rearranged the haunted house at will.

            

  Halloween itself was pretty laid back. We went house to house in the neighborhood and collected even more candy. I think I am eating more of it than the boys are eating. We also went and trick or treated at Miss Kathy's and Uncle John's houses in Watervliet. Life is good at the Stowell house these days.

        

  Now for the big news. Ben has started to receive part of his next round of chemotheraoy. We are giving him Cytoxan orally each morning before going to school. He is supposed to drink extra fluids throughout the day to keep his kidneys from being damaged by the drug. He hasn't shown any bad side effects from the drug. It may impact his immune system so we are being a little more careful to keep everyone in the house healthy.

10/26/2008

  Yesterday was NoogieFest at Gilda's Club. It was an amazing experience. There were a great number of new faces and it was nice to see the organization score a big success. The boys brought Aiva and their friend Noah with them. Everyone had a great time. A group of SUNY students did a haunted house in part of the building that the boys all went through at least a dozen times. The college students actually kept changing ti by moving around and jumping out from different parts of the maze they built and changing up the way they were scaring the kids. It really was creepy and fun. We had a great deal of discussion over the costumes for the boys. I kept pushing for them to dress as ballerinas this year, but, they didn't like that idea. I also wanted to make costumes, but, they follow in the more recent tradition of store bought costumes. It was agreed that next year we will make them. We went to the store and Ben found the perfect costumer in his eyes. It is a "Dark Watch" costume. Apparently the character is from a game or graphic novel called "Battle Ground." The boys and I had never heard of it. The costume looks like a cowboy dressed in a black duster with silver trim. He has a hood under his hat so you can only see his face. Hie face has dark five o'clock shadow and an eye patch. On the lapel of the duster there is a big, sherrif type badge with a scary looking skull on it. Aside from the look of the costume Ben really liked the catch phrase for the character - "Death fears those who wear the badge." He ran around throughout the party and was a bundle of energy. Because of the hood nobody could see he was bald, even when he took off the hat. I even had a couple people who don't see him all the time ask if he was there. The boys decided that James would be Death this year. He picked out a really scary hooded pumpkin mask and the traditional hooded black robe. At the last minute I talked him into letting me put make up on him. He decided he liked my make up better than the mask. After the party he actually thanked me for doing a great job with is make up. It is absolutely wonderful to see the two of them having a great time with their friends. The enjoyed showing off Gilda's Club.

               

10/23/2008

Ben was very funny this morning. He wants to ride the bus to school. We aren't letting him until after the surgeon clears him and that is hopefully going to happen today. James and Stacey left early to go join the Blue Creek Walking club for their early morning, before school. walk. Ben was up and dressed and I made sure he had breakfast. As I was upstairs getting ready I heard the front door open as Ben shouted, "Bye Daddy. Have a great day." I poked my head out of the bedroom quickly and asked, "Where are you going? I'm bringing you to school today." He looked up the stairs with puppy dog eyes and a pouting lip and with his best questioning voice asked, "I was just checking to see who is waiting at the bus stop. Can I go up?" I told him no and he complied by closing the door and looking up at me with sad eyes and a funny face. I warned him that his "Face would freeze that way." We chuckled and I explained that after the doctors visit today he would probably be riding the bus tomorrow.

Last night was Pizza Night at school and it was great to see all of the families together. The cafeteria was packed and the kids were running around and being kids. Ben just likes to be a kid and he really was in his glory last night. I looked around a few times and saw Aiva holding his hand and leading him off to meet her friends. I don't think he realizes she was showing off her older "boyfriend" to the other kindergartners. The two of them are so cute sometimes. James was also hanging out with friends and moving around the croud. It is also fun to watch Ben and James intereact. They really look out for each other. At one point one of the kids was giving James a tough time. James sometimes has a tough time fitting in and can be a little naive and some times kids take advantage of him. Ben watches out for this and tries to help oir if he can't finds an adult before James gets in trouble. That happened last night. Ben came and got me when a kid was pushing James to "Kiss his butt" or he wouldn't be his friend. James was resisting, but, the situation was escalating and Ben knew that James' frustration level was getting high. The situation was resolved with a simple conversation and there were apologies made.

Ben will be starting Cytoxan tomorrow. It is a Chenotherapy assist drug that he will receive daily in a pill form. It doesn't have much of an impact itself, but, increases the effectiveness of the other chemotherapy drugs that Ben will be receiving. Next week Stacey and Ben will be going down to New York City to meet with Dr Meyer at Sloan Kettering. If I can work out the scheduling I will be going to. Ben will be starting on the L-MTP-PE next week. It is a new chemotherapy drug that is still in Phase III trials. He will be receiving it under the FDA "Compassionate Use" designation. I will let you know the schedule when we have it. Stacey is supposed to call Sloan Kettering on Monday to find out the exact timing of the appointments. Dr Pete Anderson at MD Anderson in Houston is overseeing the drug trials and is one of the top experts on osteosarcoma in the world. He has personally reviewed Ben's case and has been aware of Ben for some time now. Dr Pearce and Dr Anderson have discissed Ben's case numerous times over the past 2 years. After Ben has been to Sloan a few times the treatments will be moved to Albany Medical Center. Ben's case has helped open the doors to make this treatment available in Albany. We do know that there are other kids in the Albany area that might be able to benefit from this drug and we are doing whatever we can to help make it happen for them too.

Yesterday, Stacey and I were reminded just how high the stakes are in this battle. We try to be active and participate in the battle against these cancers that predomonantly affect children. One of the things we are involved in is an email list serve group about osteosarcoma with people from around the world. The group is wonderful and has helped us to be aware of treatments, how to handle side effects, what to expect and knowing hand holding. Positive test results are celebrated and cheered worldwide. It is also a place to lovingly share bad news. Yesterday we received the devastating news that one of the brave youngsters from the list succumbed after an extended fight. He was 16 years old.

10/21/2008

   Ben has been doing really well. The weekend was nice and quiet with the exception of 2 really cool happenings on Sunday. Around lunchtime 2 of the counselors from Double H showed up. One of them, Joe, has formed a really special bond with Ben. He is a survivor as well and is going to college for nursing. Lane wasn't one of Ben's councelors this summer. She is the reason that Joe ended up being at Double H though. The two of them played with the boys and everyone had a great time. They talked about Ben about being  "a 2  time cancer survivor." Ben has telling people that left and right. I enjoy hearing it.

         

  Ben and James went to bed around 8:30 PM. We were keeping them up late because we knew that a surprise was coming up from Giants Stadium. Ben fell asleep quickly, but, James stayed up until a little after 9. The Olsen family showed up at our door and we tried to wake Ben up. It took us a while to wake him. He goes through a really cranky stage of half sleep. I think it is a sleep mechanism he has developed from so much hospital time. He sleeps deeply when he can. After about 10 minutes of being very emotional and out of it he woke up for real. When he was awake we gave him the gift that they had brought. It was a signed photograph of Eli Manning that he had signed at the game just for Ben. As soon as the game ended the photo was driven up here. Francis, the young man who made it possible, is Ben Olsen's Sister's boyfriend and he is interning with the Giants. He had to drive back to college first thing on Monday morning so Sunday night was the only time he could be there to give it to Ben. They also had a hockey puck that was signed by Rowdy the River Rat for James.

       

   We are finding out the details of Ben's next steps and I will post them tomorrow. All is well and Ben is amazing.

10/17/2008

  No updates yesterday. The big news was from the day before and basically yesterday was spent with Ben running a ocuple errands with his Mom and going out to eat at Friendly's. He was really tired by the end of the day and went quietly to bed. He seems to tire easily and get winded with less exertion than normal. Going up stairs changes his breathing rate. It is not something that surprises us considering the operation he had 10 days ago. His lungs need time to heal and they are an amazingly forgiving organ.

        

  Today he woke up refreshed and was thrilled that he would be going to school. He must have asked us 100 times "What time is it?" and "Did the bus just go by?" Each time we reminded him that I was driving them to school this morning because I needed to talk with the office and James had a big solar system project that was too cumbersome to carry on the bus. James attached and labeled different sized spheres on a big piece of black foam core to represent the solar system. As we walked into the school Ben's teacher saw me and with a big smile asked how he was doing. Being a smarty pants I replied, "He's doing really well. You can ask him yourself." She turned with an even bigger smile. I think I saw her hold back an urge to run and give him a really big hug. When she reads this she can tell me if I was right or not. Teachers hugging students is often not appreciated these days and knowing that he has 8" incisions in his rib cage that are still healing make hugs a little scary. I am sure that if I was right it was the mostly the latter reason. We have actually offered to give key members of the schools staff and administration written permission to hug the boys.

        

  Ben is home now and the school day was wonderful. Instead of looking tired and exhausted Ben seems to be recharged. I have a feeling the energy of the other kids and the building itself invigorated him. He knows he can go to the nurses office and rest if he needs it. He knows he has resources to help if he needs it and that gives him great comfort. We are told that he is working really hard to just be a good student and citizen of the school. James seems to have an extra spring in his step too. When Ben is in the hospital he seems to withdraw a little and get a little cranky. I must admit I do too. I am not sure if it is Ben's being in the hospital itself or the increased stress on the adults around him that cause the changes.

10/15/2008

 I was about to update the page saying that Benjamin had the last chest tube removed today and would probably be discharged by 6 PM. I talked with Stacey earlier and she said he was running around and that he had gone to visit the other sections of the hospital he is usually in - D7, C& and the clinic. He was also chasing the remote controlled hovercraft that the child life specialist had given him. All that in addition to wreaking havoc upon nurses and residents with the Fart Machine that I brought to him last night. Stacey called me 5 minutes ago (4:15 PM) to tell me that they had just arrived at home. Everyone is thrilled and he is feeling fine. The locations of the tubes and incisions are still ouchy and we will have to change the dressings periodically until they heal better. I don't think he will be going to school tomorrow. We will try to get a hold of his teacher to see if she thinks it is ok for him to come on Friday if he is up to it. We don't want to disrupt class and we have to figure out the whole tutor thing. We just don't want to push him too hard and let it be his choice right now. The school nurse and all of the teachers and staff are amazingly supportive. We know he will be in good hands. If he tires he can go to the school nurse and she will let him rest for a little while before either sending him back to class or calling us if it is necessary for him to go home. We know that the school counselor is there for him if he needs/wants to talk with her about anything school or life related. We also know that the school has an advocate that is looking out for him too. All that in addition to the teachers who want nothing more than to see Ben and all the children succeed and overcome the obstacles life puts in there way. Ben's obstacles are just a little more apparent and well known these days.

      

HE IS HOME!!!

10/14/2008

     Sometime during the afternoon yesterday Ben was taken of oxygen assistance, IV fluids and pain medication, and suction. His chest tubes remained in place. Last night was relatively uneventful. He woke up several times because of nightmares and pain. The chest tube on his right side is towards his back and when he is laying flat he is putting weight on it. It hurt him, but, he was toughing it out with only Tylenol every 4-6 hours. Around lunch time today that tube was removed. In addition one of the chest tubes on his left side was also removed. So he only has one tube still connected. The new found unencumberance has made him a very happy camper.He has gone for several walks around the facility. He has to stay on the 7th floor though. I haven't heard if he participated in the 2:30 activities hosted by the child life specialists each weekday. I do know that when the tubes were being removed he requested to have one of the child life specialists there by his side. The tubes are very long and it is not a very pleasant experience. The child life specialists are wonderful and they are the one adult person that the kids can count on being impartially by there side. It is a very unique neat experience. Ben knows that Stacey and I want the best for him. He also knows that we will be there coaxing him to do what the doctors and nurses are trying to do. The child life specialists are there for the child not the procedure. Something I am not sure a friend or relative could easily do. It is a hard concept to explain, but, it is magical to watch and AMC has wonderful child life specialists. The child knows that they will never poke, prod, stick, or do anything that will cause any pain to the child; they leave that up to the doctors, nurses, respiratory therapists, radilogists, patient care assistants and parents. Needless to say Ben had a friend and advocate by his side. Ben is doing great and the other tube should be removed tomorrow and then we will be heading home after they are sure there are no problems.

   

  He may even make it to school this week after all.

10/13/2008

   Ben continues to improve. I went to the hospital for lunch today. I picked up McDonald's chicken nuggets for him. He ate 3 of them and 2 french fries. It is good to see him eating. The chest tubes are still in, but, the suction has been turned off. They are making sure there are no leaks. Later on today they will be determining the next course of action on the tubes. The most likely event will be to remove 1 of them thsi evening and then the other 2 tomorrow. Ben walked all around the PICU and then walked from the PICU to the C7 unit to visit with his chem nurses and the residents there. He had no difficulties walking and it was probably a few hundred yards of walkng. Everyone is thrilled. We talked with Dr Pearce yesterday and she said that the surgery was very extensive and a great deal of tissue was removed. She also told us that Ben would not have to go to Houston to receive the next chemotherapy drugs. Sloan Kettering in New York City will be able to give him the first 2 rounds of the L-MTP-PE. Albany Medical Center is being added as a satellite center so he will be able to receive the rest of the treatments here in Albany. When qwe find out more about that treatment I will have more details on here.

        

   Last night Ben went for his walk just before the Star Wars Clone Wars show started on Cartoon Network. It was hilarious to see him walking down the hall being escorted by 2 male nurses, both of whom just happened to be wearing black scrubs. It also helped that both nurses could easily be bouncers at a nightclub. The scene looked like he had a security entourage. One of the nurses was holding the tubes and wires attached to Ben and the other one was pushing a small cart with an oxygen cylinder and 3 suction containers. Ben just wanted to get back to the room to watch his show so he kept walking faster and faster to finish his lap of the PICU as fast as possible. Other nurses were pushing equipment out of their way to make room for the 3 of them.  I was wishing I had the camera and didn't think of my phone until after we were back in the room.

10/12/2008

  Ben is improving. Today he was removed from an oxygen system that provided mild assistance with each breath. He is now on the more typical oxygen therapy that consists of the tube up the nose like in the movies and on TV. He was able to go for a walk in the hallway today and his chest tubes should be removed on Monday or Tuesday. I will give you all more detail later on tonight. Suffice it to say he is working hard to get home as soon as possible and things are look positively.

10/10/2008 Part 2

   It is 10:10 PM on 10/10 as I am starting to write this update. I just thought that was kind of cool. Ben is doing great. He is resting/sleeping very deeply. Stacey said he had a very exhausing day and worked really hard. It shows because his stats look great. Here is a photo I took with my phone of his stats for prrof. Anyone who has seen him this week or read the other posts knows what an improvement this is. Thetop is heart rate - next is respirations - then blood oxygen level and then his blood pressure. Since it is Ben's data I don't believe I am violating HIPAA and I have actually read the regulation. Don't ask.He is resting well.

       

          

10/10/2008 Part 1

   Ben is doing well today. Yesterday in the late afternoon we had a bit of a scare. Stacey called me at work around 4:30 and told me that I should come and see Ben before going and picking up James. Ben was scared and his blood oxygen levels were in the 80s, he was working hard to breath and his heart rate was really high. She thought I would help as he was recovering from an incident. He had started to gasp and couldn't catch his breath. He was saying in a panic that he couldn't breath in between gasps for air. Nurses, residents, a respiratory therapist and the docotor in charge of the PICU came quickly to his room - without being called. They checked the hoses on the chest tubes to make sure one of them wasn't detached or otherwise leaking. They adjusted his oxygen tubes and the volume available to him through the tube up his nose. It was a hive of activity and he stabilized. They then hooked him up to a machine that forced air into his lings. It assists him with breathing by pushing extra in when he inhales. It is rather painful and uncomfortable. He is still doing chest PT and periodically using the new machine to make sure he is filling his lungs as much as possible. He receives respiratory therapy every 3 - 6 hours. I stayed at the hospital until around 7. When I left he was doing great. His blood oxygen levels were 96-98% and his heart rate was in the high 130s. He was breathing better and more evenly. His color was great and he was talkative. We talked about David Ortiz and all of the comments people had been making on the web site. He was in a great mood considering he had just had the wits scared out of him earlier.

                  

     It was nice not having to worry about James during this time. He spent Wednesday night with Stacey's Aunt Carol and she dropped him off at Siena around lunch time. James was with Coach Howe until I picked him up after 7. He shadowed her through a class and was able to swim with the water polo team. They also worked out in the weight room. He hung out at poolside and in her office that is adjacent to the pool. The water polo team is a great group of young women. He loved it and it was nice to be able to let him be the center of attention. Soon after Aunt Carol dropped him off Coach Howe called me just to let me know that she had him and he was in good hands. She told me, "I hope you don't mind, but, I'm really spoiling him." Before I could say anything I hear his voice in the background, "It's OK. You can spoil me." I told he was right and she could do what she thought was appropriate. She and the water polo team showered him with just the right amount of attention for the day. 

      

  By the way I am really excited about my new job. I found out today that at least one of the things we are working on here is a treament for osteosarcoma. To use Ben's words to one of the nurses, "My Daddy is trying to get a job with a company that wants to cure my kind of cancer. Isn't that great." I don't think they realized in the interview process just how motivated an empoyee they were getting.

  

10/9/2008

    The chest x-ray this morning showed improvement over last nights x-ray. His right lung is looking great. Last night when I looked at his chest x-ray his left lung was not even really visible. A healthy lung shows up mostly black on an x-ray. There were very few areas of dark gray. The chest x-ray this morning had areas of black and gray. The momentum has started to shift. He is working really hard. He is receiving chest PT every 3 hours. It consists of pneumatic thumper that they run over his chest and back for 15-20 minutes. It is not pleasant. When they started to do it the first time he asked the nurse, "Are you sure you want to do this?" When I was there last night he told the nurse to avoid his chest tubes.  He has 3 chest tubes (1 right, 2 left) still in place. They drain unnecessary fluids, that are a result of the bodies reaction to the surgery, from his chest. They are draining nicely. He is also receiving some occupational and physical therapy to make sure he isn't losing any muscle function while being confined to bed and chair. We are looking to get him moving around more. His port was accessed today so the IVs in his hand and arms will be removed. It really unnerves him to have them in place and it is also uncomfortable. All of the hoses and tubes running in and out of him really limit his mobility - both physically and psychologically. He is afraid one of them is going to get pulled on.

           

   Last night he had a special visitor. Lisa, the woman who made the meeting with David Ortiz possible, stopped by to check on him. She is heading to Boston for another event and wanted to see if she could get Ben anything. He was really out of it and not very communicative at that point of the evening. He really didn't give her much to go on as far as something he would like from the Red Sox. Later on she asked him about football and he was more verbal. He told her he would love a signed football from Eli Manning. The big news that made him crack a little smile was when she talked to him about David Ortiz. The whole time she was visiting he was sitting up in an uncomfortable chair at best with tubes coming out of him and 6-8 inch incisions between his ribs from Monday. She told him that David's agent has been in contact with her several times asking about Ben. He told her that David has the picture they sent him with David signing Ben's head hanging in his locker area along with the bracelet and pin Ben gave him. There is no way the bracelet could fit on his wrists. After Lisa left Ben was a littel more talkative and said with as much excitement as he could muster, "Daddy, do you believe it? David Ortiz has a picture of me hanging in his locker." I'd love to see that. We are thinking of printing out 2 copies of the picture and having Ben autograph both copies and send them to David. We'll ask him to sign both of them and then send 1 back to Ben.

10/8/2008

   It was a long night for Stacey last night. His heart rate has come down some and is not really a concern at this point. He seems to be managing and communicating about his pain levels. He is having difficulties with breathing and keeping his oxygen levels up. They have taken additional x-rays and one of his lungs has collapsed. They are trying to assertain why and develop a plan of action to get it re-inflated or help Ben's body re-inflate it. Ben is in a great deal of discomfort, but, not necessarily pain. There are 5 lobes in your lungs and it is one of the large ones that is having difficulties. It is on his left side.

         

Right        Left

       

  I stopped by the hospital this morning on my way to work after dropping off James at one of his friends houses. Stacey didn't sleep at all last night. Ben was receiving a red blood transfusion and was thrilled to see me. It was a surprise. He and Stacey thought I would be going straight to work. I washed his face and talked with him. He was sweaty from the effort it takes for him to breath. He was able to talk though. My mere presence seemed to make his vitals improve - Daddy power. I brought him his Healing Buddha and he took it into his hand and thanked me. I also brought him a postcard and letter from his Chemo Angels Kasey and Julie. He smiled a big smile as I showed him the postcard and then promised him that his mother would read them to him. He is thrilled that the Red Sox won and are moving on closer to the World Series. Stacey walked me to the elevators and we talked about our brave boy Ben and the situation. He is in a dangerous place right now and we need him to turn a corner and start some momentum in the right direction.

10/7/2008 Part 2

  Ben is doing better. His heart rate has come down into the 120s. Throughout this his blood pressure has been ok. His respiration rate are all over the board, fluctuating between 30 per minute up above 60. When he sleeps they are slower and slightly more rhythmic. Overall he is doing well at this point. The surgery is a huge surgery. Imagine having an 8" incision made between 2 of you ribs and then having your ribs spread apart so an adults hands could reach into your lung cavity. It is no wonder he is some pain and discomfort. They are working on managing it, but, it is hard because he tells us that he is only experiencing pain of 2 on a scale of 10. We are also thinking that a good deal of the rapid heart rate could be anxiety. He has admitted to us that he is scared. I know last night and this orning he was telling me he was afraid the doctor who had no bed side manner would be coming to see him. To be on the safe side they have taken multiple chest x-rays and cultured his urine and blood to make sure there is nothing growing inside that shouldn't be there. Stacey just told me she thinks she is seeing small improvement moment by moment throughout the day. Ben is doing really well.

10/7/2008 Part 1

   It is almost 4 am and it has been a long, mostly uneventful night. It has required attention because Ben's heart rate has been high all night. Between 10 and 11 PM it started trending upwrds. It was topping out at 160 beeats per minute. Between 11PM and 3 M I never saw it below 155 beats per minute. His breathing has been rapid and shallow. He keeps insisting that he is not in pain. One time he told the residents and nurses, "I'm not in pain. I just need more fuids." As ti turns out he is in pain and wouldn't admit it because he is scared of the doctors. One of our favorite residents and I were able to get him to tell us about it. I had to remind him he could trust her. Ben told me he was scared because it was starting to look like the last time he had this operation. I explained that he would not be speaking with the mean doctor. The resident commented about my encouragement directed towards Ben and thanked me for telling Ben he could trust the doctor. They ncreased Ben's fluids and added Tylenol to his morphine and his heart rate has been in the high 140s. Ben is doing really well and I am going to close my eyes now.

10/6/2008

  Ben is in the recovery area right now waiting to go up to the PICU - Pediatric Intensive Care Unit. The surgeon came out and talked to everyone and said that Ben had done wonderfully. One side had 9 nodules removed and the other 14. I think Stacey said they ranged in size from the size of a grain of sand to the tip of a thumb. The nodules have been sent to pathology for testing - some of them may be scar tissue or other anomolies. I will update more from the PICU tonight. I will be doing the overnights as usual.

          

 10/5/2008

  Today was a great day. It started with the boys getting up really early. They were both excited to be going to church. Today was Pet Blessings Sunday in honor of the Feast of St Francis. They wanted to make sure Mocha received a blessing from David. She was wonderful throughout the service and received her blessing. After church we dropped Mocha and James off at home. Ben and I followed our tradition and headed to the Circle Diner for breakfast. We were late, but, it didn't really matter because they serve breakfast anytime. Ben always gets pancakes and I always get 3 eggs homefries and toast. The only question is whether or not he gets a short stack or a full stack. As we arrived at Circle Diner and headed for the dorr we noticed a group of about a dozen people standing outside the restaurant talking. It is not uncommon to see people enjoying a beautiful day and keep there conversations going out in the parking lot. I immediately recognized 2 of the people standing in the group. One was Brendan, they young man who is a student at Siena and an Osteosarcoma survivor. The other was his mother from California. You may remember that they dove from the Los Angeles area all the way to San Diego to visit Ben when he was in the hospital out there. Here they were 1/10th of a mile from our house. It was parents weekend at Siena. Up we stroll like we own the place and say hi. What great timing? We talked for a while and were able to meet the rest of the family. Dena was thrilled to see Ben. She said, "Ben, you are looking so much better than the last time I saw you." It was really cool to have that happen. Ben and I talked a great deal during our breakfast. He thought that running into them was just one more part of a great day. He told me that he was scared about the surgery tomorrow. I explained that it was understandable for him to be scared. He also said that he wasn't worried, just scared. He has told us before the thing that scares him the most is the catheter. We also talked about how he was going to stay in the area when he grew older so that we could always keep coming to the Circle Diner on Sundays for breakfast. He told me when I am an old man he will pay for breakfast. He is a little disappointed that I won't be there in the hospital during the surgery tomorrow. Tomorrow is my first day at my new job and I need to be there to make sure our health insurance from there starts tomorrow. It starts on day 1. My new employer is not aware of Ben's surgery. We discussed it and didn't want to put them on the spot on the first day. Miss Kathy is going to be there in my place and Ben said that was ok with him. There will also be a few other people showing up too. The surgery is scheduled to start at 10:10 AM. We will have him down there at least an hour before. I will be doing the overnights as usual. I will update everyone as we go along. We have things lined up for James tomorrow and Tuesday. We are still working on Wednesday and Thursday. Thursday is the tough one because there is no school on Thursday. We have some ideas so don't be surprised when we call you.

              

   While we were eating diner tonight a woman came to the door and I think she rang the bell. At the dinner table my back is to the door. Stacey's Aunt Carol had noticed her come to the door. She opened our glass front door (the inner door was open already) and said."Please don't get up from the dinner table. Here is something for Ben." I of course was getting up from the table anyway and heading for the door. She was already halfway back in the car when I got to the door. I waved a big wave and we smiled at each other. I didn't even get a chance to thank her. I looked down at the floor and there was some money that she had layed there for Ben. I looked back and they were driving away. Ben thought it was cool because he saw toys. We explained to him that it would be going into the Ben fund to cover other things - he agreed. People ask us how we are so strong. I know it sounds like a broken record, but, we are strong because of you. Things like this happen and you just know there are angels in this world. Each of us has opportunities to be angels for other people and we are blessed with seeing actions like this on a regular basis. Notes of love and encouragement. A childs allowance money is left in the school office for the Ben fund. Someone stops by to take care of the dog when we are too busy. Everyone watches out for James when we are forced to focus our attentions on Ben. A lifelong friend stops me in Target and gives me an opportunity to just talk and reminds me how strong we have been for the past 2 years. 

            

   Stacey's garage sale never took off this weekend. The weather was looking iffy and as she was setting up one of the long time residents of our neighborhood rolled up and put the squeeze on her for protection money. Seriously the really nice, neighborly woman showed up to tell Stacey that next week is the neighborhood garage sale and that it would be better for her to wait another week. So we have blue tarps in the driveway for another week. I have almost emptied the storage shed and we have lined up most of the holiday decorations from the basement to go out. So next weekend is the big garage sale. Our hope is that Ben will be home for it. He really want to be home on Friday so he can go to the Fire Prevention event at the SW Pitts Fire House Friday night.

       

  So everyone is sleeping well and the weekend was great. Tomorrow is going to be a very long day and we know that all of you are with us and with Ben.

10/2/2008

  Since my last update on here not much has happened in our lives. We have been getting up early and catching the bus to school. We have been experiencing a level of normalcy that we really haven't experienced in a long time. It has seemed that we have been spending the last 2 years trying to figure out what was next. Although we present a good face to the outside world inside Stacey and I have been scared to death at times on the inside. We haven't hid anything from the boys or from you, but, I still have not been able to find the words to describe those moments of terror and worry. We have often been trying to cram in a great deal of extra life into our families time. Since my last posting we have done nothing that was not part of our normal pre-osteosarcoma routine. There have been a couple of doctors appointments and Ben did have a couple of scans, but, overall we have been a bit withdrawn and sluggish. Doing small things like extra cuddling, working on homework, playing video and other games. We have slept in on the weekends and gone to bed early during the week. This weekend Stacey is having a garage sale of the stuff we have accumulated in our garage, storage shed and basement. We have taken this opportunity to rest before a coming storm of an operation and a new chemotherapy regimen. Many of you have been helping us as we regain our momentum. Through your cheers and support the ifosfamide did its job and worked. The tumors in Ben's lungs have been reduced to the point where his lungs are now operable. Ben's strength has grown and he is ready for the next steps. Our resolve has grown and we are ready to stand our ground and move forward into a new phase of this journey into more unkown territory. It is through the support of all of you that our family has been able to maintain our courage and strength to the levels that we have needed to move forward. Reminding us to focus on the positive when all we can see is negative.

            

  Ben's bilateral thoracotomy has been scheduled to take place on Monday morning. We have been told that Ben has a "handful" of tumors in each side of his lungs. Stacey asked for the exact number and we were told around 6 or so. We are waiting for the surgeon to call back so we can discuss the surgery with him before Monday. The surgeon who will be doing the surgery has been inside Ben's little body 4 times now. It is actually a little comforting that this will be his 5th time. It's weird, but, it's like he should be getting familiar with where all the parts that should be there belong. After the surgery Ben will be in the hospital recovering for about a week. After he recovers from the surgery he will be starting a new chemotherapy. He will be receiving it as part of the FDAs "compassionate use" classification. He does not fit into the criteria for him to participate in a clinical trial for the L-MTP-PE. The first 2 rounds of the treatment will be taking place in Houston, TX at MD Anderson Cancer Center. We just heard that they are giving it at Sloan Kettering in NYC so we are looking into going there. A train ride seems a lot closer than a plane ride. We haven't found out yet whether or not our health insurance will cover the costs because of my employment change we haven't submitted the request. We will be covered under the new as of my first day of employment - Monday. We are still covered under our current policy until the end of October. Thank you all so very much for the support you have given and continue to give.

          

   So many of you say that you haven't done anything or much to help us. Just knowing you are there lifts us up. We know that there is a whole team of people ready to act to do whatever it takes to get Ben through his battle.

9/24/2008

  We have been having a great time since the game and meeting David Ortiz. Thank you all for your celebratory emails and guestbook updates. Ben has been living the life of an excited 8 year old third grader. He is up and dressed and ready for the bus on his own. He even started making his bed this week. The boys are enjoying school and we received a note home from James' teacher saying is working hard. On Wednesday Ben had another set of scans done. He has been scanned many times recently. The 3rd round of chemotherapy with the ifosfamide made a difference. It looks like one side of his lungs may be clear. There weren't any tumors visible on that side. The other side had less than a dozen tumors visible. What a difference since the beginning of the summer when his lungs seemed over run with tumors. His lungs are operable now and we are looking at the next steps. He will be having the same lung operation he had earlier this year - a bilateral thoracotomy. We need to make sure that his lungs are clear before the next chemotherapy starts. We will be talking to the surgeon next week to discuss options. We have been looking at alternative techniques to the surgery including a laser surgery that is only done in Europe at this point and a technique called cryoblation which is done at John's Hopkins in Maryland. You will here more about these options after we speak with the surgeon.

             

  After the surgery Ben will start on a chemotherapy round that will be centered on a drug called Mifurmatide or LMTP-PE. It is given with either GM-CSF or a drug named Cytoxan. We need to speak more with the oncologists about which one Ben we will pair the LMTP-PE with for him. The chemotherapy will eventually be given at Albany Medical Center, but, it is looking like Stacey and he will be travelling to MD Anderson Cancer Center in Houston Texas for the first couple of rounds. We are a little nervous about this, but, Ben is being very brave. We will probably all go down for a weekend before and then James and I will come home. We are not completely sure on the timing of this. We think he will be in Houston for two weeks...home for two weeks and then back again. When he starts the chemotherapy depends on how long it takes him to recover from the surgery. As we find out more I will post it on here. The good news is we will most likely not be heading for Houston until hurricane season is over.

          

   To complicate matters a little I am changing employers. My first day will be October 6th. The boys are very excited about the job. My present employer has been very good to us and I am very thankful for them. The reason the boys are excited about the new job was highlighted in a discussion that we had when I was taking them to Noogieland at Gilda's Club on Tuesday. Out of nowhere James turned to me and said, "I'm glad you are getting the new job." I asked,"Why James?""Because the company you will be working for is trying to cure cancer. You know you need to cure cancer. Ben could die from cancer, you know." Ben chimed in,"He's right Daddy my cancer could kill me." I replied,"Ben we are doing everything we can to make sure that doesn't happen and we have a great team of doctors that is working with us." James said,"And you are working to cure cancer." We talked a little more and I explained that the company I am going to work for is working on things and making things that help people with many diseases. To which James asked me if they were helping people with diabetes like Joe Jonas - I think he said Joe. By the time we arrived at Noogieland they were running around and the conversation was behind them. It was fun time. I couldn't help, but, think how many adults would be deprssed for a day after that conversation. Kids are amazing. People often ask me if the boys know what is at risk. I always tell the folks that ask that we have not lied or hid anything from the boys and that the boys do know. The conversation in the car demonstrated to me that they really do know what is at stake.

      

  I still have to pass the drug test...

    

9/15/2008

  Ben and I went to bed early for a Saturday night. Well, early for me and normal for him. We were in bed by 9 PM and Stacey and James were still awake when we both fell asleep. It was decided that Ben and I would sleep in one bed and James and Stacey in the other. We both slept soundly. At 6 AM I heard/felt him slip out of bed. He had decided to get an early start. I was up an out of bed at 6:15 and he was already dressed in his David Ortiz jersey and ready to go. I got up and dressed. James was awake when I finished so we told him to tell his mom that we would be back and Ben and I went out for a walk.

           

  It was raining so I had checked the weather report and it said it would stop by noon. Ben and I borrowed umbrellas from the hotel and started to head towards Fenway Park. We had brought a sheet from home to use for a sign, but, we had forgotten markers. We had also left our rain ponchos in the car. The car was in the valet at the hotel and I didn’t feel like getting the car out just for that. I had seen a CVS store near Fenway on my travels yesterday so I thought we would stop there. It also meant that Ben could see Fenway during a quiet rainy morning. I was a little afraid I would tire him out, but, he was doing so well I thought it would be worth it. 

         

  We talked about a lot of things while we were walking. Even in the rain he was overjoyed. His one concern was that they might cancel the game. I told him not to worry about it. I also told him that even if the game was cancelled there was still a really good chance that he would get to meet David Ortiz. I asked him several times if he was ok or getting wet from the rain. He said he was fine and that the rain was only getting him a little wet. It was a misty, drizzling rain that was blowing slightly under the umbrellas. As we moved closer and closer to Fenway you could sense his excitement growing. We arrived at the corner where Gate A is and he just stopped and looked at the park. There was nobody around. We walked around the side and down Yawkey St. I told him how the street would be closed later that day and filled with people. I pointed out where we would meet Lisa at Gate D around 10:15. We turned the corner and headed toward the statue of Ted Williams and the little boy. On the side of the stadium there are banners listing the names of famous players and the player numbers that have been retired. Ben asked where David Ortiz’s name was. I explained that he was still playing and that the last player to have his name up there was Wade Boggs. He looked at the banners and said, “Someday there is going to be one for David Ortiz and the number 34 is going to be on the wall too.” I told him that was likely to happen. He said, “I can’t wait to see it.” As we arrived at the statue Ben asked me who the player was and I told him. He said, “That’s the player the taxi driver talked about yesterday.”  Told him yes and he said, “It’s really nice he is giving the little boy his hat.” I asked him if he noticed anything special about the little boy. He said, “He has the number 9 on his shirt….Hey, he’s bald like me.” I said, “Yes he is…” I choked up a little and Ben looked up at me and said, “Take my picture next to the statue.” I could tell he noticed me choking up and my eyes getting a little teary. I took a couple of pictures as he posed. He said, “ok, that’s enough.” Then came over to me and gave me a hug. We turned and headed to the CVS store to dry off and get sign making supplies. We also purchased some Red Sox plastic ponchos and a couple of car magnets. The ponchos are the wear them once and they are done type of ponchos. We never did actually use them. The car magnets were immediately put to use as soon as we had access to our vehicles.

         

  When we were in the store Ben told me how much fun he was having. He also said it was great to just go for a walk with me. As we headed back to the hotel I talked about a time I ran with a friend through a blinding rain storm and we ended up jumping in puddles because we couldn’t possibly get any wetter. He laughed and told me that sounded silly. I didn’t even have to talk him out of puddle jumping on the way back to the hotel though. He didn’t want to get his David Ortiz jersey wet.         

        

  We arrived at the hotel and created the sign while Stacey finished getting ready. Ben James and I cut up the sheet that Stacey had packed and wrote “Let’s Go Red Sox!” and The Green Drakkoman loves DAVID ORTIZ! on it with the Green Drakkoman logo. We packed everything up and headed out fr breakfast and to go back to Fenway Park.

       

  Ben was way ahead of us on the return trip. He knew the way and there were more people on the streets even though it was 10 am and the game didn’t start until after 1. As the four of us drew closer to the park Ben started to skip and almost dance his way towards Gate A. I tried reining him in, but, it was easier to just try to keep up with him. As we turned the corner of Yawkey St there was Lisa and her husband. We greeted each other and told her once again what a special thing she was doing. I know she could see it in our eyes as she looked at Stacey and I and said, “Come on let’s head to Gate D before we all start crying.” We ended up waiting for quite a while outside the Gate. The rain had messed things up a bit. They weren’t doing batting practice outside and some other things were delayed. We didn’t worry and the boys did an amazing job of being patient. While we were waiting Lisa introduces us to John Corcoran who is one of the owners of Charity Wines. It is through her relationship with Charity Wines that this was all possible. As many of you know we weren’t sure if James was going to get to meet David Ortiz. John came to us and said, “We aren’t sure what is going to happen when we get inside. Tell James to just stay next to his brother and don’t say anything like, ‘I don’t know if I going to get to meet David Ortiz.’ ‘Will I be able to…” and hopefully everyone will get to meet him.” All I could think was, “I love this man. He thinks like me.” Needless to say everything worked out well and we would all got to be there to meet David Ortiz.  

   Before we met him we were taken on a small tour of the stadium. The tour was really cool. We found out that the seats we would later sit in were installed in 1910. The wood was still hard and people had smaller butts back then. We also were able to sit in the Green Monster seats. I can only say one thing about them...”Wow, what a view and way to see a game.” I and the boys hope we can get to go back to a game and sit there some time.

         

    The tour was interrupted so we could go down into the park to wait to see David Ortiz. We ended up waiting for a really long time. Once again the boys were absolutely amazing. I have never, ever seen that much patience from 8 year olds. I think the adults were starting to lose it. After what seemed like an eternity we were told it would just be a few more minutes. Then they came back and said a few more minutes. A few minutes more. Then we were told that David would only have 20 minutes to send with the 20 of us. Then they came back and said 15 minutes. Finally we were told we would be lucky to see him for 5 minutes. At that moment almost in unison all the adults, except Stacey and me, said to the Red Sox Ambassador that was our guide, “No Matter what he gets to meet David Ortiz and get something signed.” as they pointed at Ben. Then one of the added, ”And his twin brother too.” I was amazed with the exception of 2 of the adults we had never met any of these people. Some of them were generational Red Sox fans who had traveled great distances to be here. They were all willing to give up the chance to meet David Ortiz for the opportunity to witness Ben meeting him. At last avid Ortiz came out through the door and Ben and James approached him. The boys said hello and politely asked him to sign the baseballs they had brought. He is 6’4” tall and exudes the power of a linebacker. At the same time you feel his power you feel this kind, gentleness and care as he greeted the children in the party. There was a sense of playfulness as he posed with the kids. Something he has to have done thousands and thousands of times. Yet the children felt like he was theirs alone. Ben gave him one of the Green Drakkoman pins and a bracelet. James gave him a cardboard envelope that contained their Little League pictures that they had autographed for him. He smiled as he looked in the envelope thinkng it contained a picture of him that they wanted to have signed. He handed all of the objects to an assistant that was standing slightly to the side and rear. James and Ben posed and then Ben asked him to sign his head. Ben looked up at him and said, “They told us we could each only ask you to sign one thing. Since I had my ball signed my ad has said his one thing could be my head because I wanted you to sign that too.” I guarantee you that David Ortiz has never signed a little boys bald head before. He asked Ben to repeat the request because wasn’t sure he heard correctly. He then looked up at me, Sharpie in hand, and asked, “Are you sure?” I shrugged as I nodded and said, “Yes.” Ben presented his head to David Ortiz with the respectful bow of a martial arts master and David Ortiz carefully steadied his head with one hand and signed Ben’s head. It was truly a magical moment and the look on David Ortiz’s face was that of a father. Everyone in the party was able to meet David Ortiz and get something signed. As David turned to go back in the clubhouse James realized he hadn’t been able to get a picture with him alone with David Ortiz. e ran to try to catch him before he was completely inside the door. I thought it was too late, but, David heard James over the noise of Fenway. He turned and listened as James explained the matter. He stepped next to James and put his arm around him as we took their picture. He then thanked James and went inside. It was about 30 minutes before the game would start. 

      

  I can tell you one thing. Ben’s head has never been photographed as much as it was in Fenway. The game was wonderful and when we walked through the aisles to get food people did double takes as Ben passed. Ladies came up to him and asked who had signed his head. One of the ladies sitting behind us took a couple of pictures of the boys and asked for our email address to send them to us. She also took a picture of us holding up our sign. Our seats were behind home plate just inside the blue seats – about 20 rows back. We were being careful not to hold it up too long when David Ortiz was coming up to bat. Just before his at bat in the 8th inning we held it up quickly. As we brought it down the young woman behind me tapped me on the shoulder and said, “NO, hold it up longer. He might see it. It’s ok.” We did and David Ortiz hit a triple. He rarely hits triples and hadn’t since August of 2007. The fans around us attributed that triple to Ben and the Green Drakkoman. We even managed to get shown on national TV. By the time the game was over Stacey had 4 calls on her cell phone. We had an amazing time at the game. I was amazed at how friendly everyone was. What a blast. I have never sung a Neil Diamond tune (Sweet Caroline) at the top of my lungs with so many people before…and I was sober too. Around the   4th inning Ben leaned across James and his mother and said to me, “I can’t wait to do this with my children.” We smiled at each other and I agreed. As I sat back and saw that he was engrossed in the game I cried a few tears. Tears of absolute joy that we were sharing this amazing day together as a family. I thought back to a day earlier in the summer when for a brief moment I couldn’t imagine such a wonderful day happening and the world was just so bright. I will never, never, ever be able to thank Lisa P., the folks at CharityWines.com, David Ortiz or Jenn H. for the gift that they made possible for our family on a beautiful, rainy, overcast day in Boston.

           

  On the ride home after the game we all basked in an after glow of fun. James asked, “Can we go back to Boston next week?” Ben said, “This was the best weekend of my life.” James added, “Of our lives.”

         

9/14/2008

   I must start his post by telling you all that this past weekend was one of the most memorable, happy weekends our family has experienced in a long time, if not ever. We laughed a great deal and enjoyed each others company. I saw Stacey cry a little at least once and I shed tears a couple of times. I hope you have some time because I think this is going to be a long one.  

     

  We had breakfast at a restaurant that is in a storefront type space on the first floor of the hotel. As is often the case in large cities the first floor of the Hotel Commonwealth is made up of storefronts at street level and the first floor of the Hotel is actually the 2ndstory. In fact the entrance to the Kenmore Metro stop is in the center of the almost block long hotel façade. The Metro is called the “T” in Boston and is basically the subway system. If you ask for directions to “The Subway” you will either be given directions to a sandwich shop or told you have to go to NYC for that. The Kenmorestop is the stop everyone uses to take mass transit to Fenway Park. Breakfast was really good and our waiter had a very distinctive accent. It sounded Brazilian to me. James hadheard that everyone in Boston spoke with a very strong accent so he was listening intently to find it. We had not encountered anyone yet with a Boston accent. When the waiter brought us our meals James asked him, “Excuse me, do you have a Boston accent?” The waiter asked him to repeat his question and then laughed, “Nobody has ever asked me that.” He kindly told James that he was from Columbia and that people usually asked if he was from Spain, Brazil or Portugal. He was really sweet with James and I am sure he now has a great story to tell. He recognized us when we went there for breakfast on Sunday too.

            

   During breakfast we decided to go to the Aquarium and then the Museum of Science. E took the T and the boys really enjoyed taking the trains. We had to switch from the Green line to the Blue line to get to the aquarium. Our stop was right there when we arrived. Hen entering the aquarium building we were first directed to a side exhibit area that contained a jellyfish exhibit. It was very dark, but, seeing the different jellyfish was absolutely amazing. He movements of the creatures was otherworldly and beautiful. The boys went from one tank to the next excitedly describing to us what they were seeing. Some of the exhibits were interactive and you could change the colors of the lights to see different parts of the jellyfish. As we finished the exhibit and entered the main part of the aquarium building I turned to Stacey and said, “That alone was worth the price of admission.” We walked into the aquarium proper and the first thing we saw inside was the penguin exhibit. The boys absolutely loved seeing the penguins. When we were in San Diego one of the biggest disappointments for James was that he never was able to see any penguins. Ben pointed that fact out to James and said, “Hey, now we got to see the penguins together.” After watching them for a while we walked around the huge central aquarium tank. It is a giant cylinder and the walkway spirals around it in a gentle incline. I would guess it is at least 4 stories tall. The boys called out the cool things they were seeing. The highlights were a shark and a sea turtle. We also walked around looking at the other exhibits. We found a reef tank that had multiple species in it and contained almost every type of fish in the movie “Finding Nemo” and then some. It was really neat watching the boys interact with the exhibits reading the signs to us. Ben found one that contained Cephalopods and I explained to him that Cephalosporins were not related to the species. At least I don’t think so.  Remember he is allergic to the Cephalosporin class of antibiotics.  As we were looking at the Cuttlefish in the tank a gentleman told the boys to wiggle their fingers in front of the tank at the creatures to see if they reacted. The boys did and the cuttlefish changed colors and even flashed a little bit. It was really neat.

                

  Then we went to an I-Max 3-D movie about the Colorado River and the Grand Canyon. It followed a rafting trip through the canyon as it looked for changes in the river over the last century. It was amazing to see the differences that the dams and farming has made to the river. Of course the most exciting parts were when the rafts and kayaks went through the rapids. We decided after watching the movie that we are going to take the boys rafting on the upper Hudson river next spring. James wants to learn how to kayak now. Ben prefers rafts. I am up for anything and I think Stacey likes the shore.  

   After we finished the movie we did a quick walk through the gift shop at the aquarium and talked James out of buying a Squirmle type toy. We ended up saving the souvenir budget for a later purchase. We had a great time at the aquarium and talked about saving the rest of the aquarium for a later visit. We decided that instead of taking the T to the Museum of Science we would take a taxi so we could see more of the city and just to do something different. Our driver turned out to be a wonderful man. I sat in the front of the cab and Stacey and the boys were ion the back seat. Our driver had been driving a cab in Boston for the past 18 years fulltime and part time for a number of years before that. As we all climbed aboard he said, “Once upon a time or maybe twice there was an unearthly paradise called Pepperland.” and turned on the CD player in the cab. I was confused a little until I heard The Beatles song Yellow Submarine begin. He turned to me and said, “I thought the boys might like this one.” As he drove away from the Aquarium I knew the boys were a little hungry for lunch so I asked if there wre any nice restaurants near the Museum of Science. He immediately said no, thought about it, and said, “No, come to think of it there isn’t really much of anything right there.” Stacey and I looked at each other and decided there had to be a snack bar type restaurant there. As he drove he talked to us about playing keyboards in a band, studying at Harvard, the sites we were passing and the interesting people he had had in his cab over the years. He talked of freedom and how having kids would probably have changed his life dramatically, “I would have probably grown up immediately.” Stacey and I both think he was a little older than we are. He spoke of movie stars, rock musicians and Nobel Laureates. Our favorite story was that Ted Williams had been in his cab. He described him as a nice man who tipped well. Unfortunately, he told us that he was absolutely tongue tied and couldn’t think of anything to say when Ted Williams was in his cab. I thought to myself. “This guy can talk about anything to anyone and Ted Williams made him speechless.” He spoke of Ted Williams with awe and reverence. Since everyone was in baseball mode talking about Ted Williams and Boston baseball was a favored topic. It wouldn’t be until later that day that I realized why he was almost choking up over that ride with Ted Williams. We arrived at the Museum of Science with smiles on our faces. As I paid him the fare and gave him a nice tip for making the ride pass so quickly and entertaining us. He looked at me with a look of concern and love, “I wish the boy well. I don’t know you, but, I will carry him in my heart.” As I had pulled the money out of my pocket one of Ben’s Green Drakkoman buttons had fallen to the ground. I bent down and picked it up.  Handed it to him and said, “Here, this is a picture of the super hero my son Ben created that is helping him. Thank you very much for the memorable ride.” As I closed the door and turned to walk away I noticed that the money was just sitting on the seat of the cab, uncounted, and he was just looking at the little button rubbing it with his thumbs. The image of a monk in prayer popped into my head.

           

   We had a great time in the Museum of Science. The food was very expensive, cafeteria, museum snack bar food. It wasn’t awful, but, very ordinary. Ben and James had hot dogs. As Stacey and I were working on our lunches Ben spontaneously erupted and the majority of his lunch came right back up onto the tray and table. It happened so fast and silently that I don’t think another soul in the relatively crowded dining area had any idea what had just happened. Except a single mom sitting across the aisle to my left. Stacey quickly wiped it up with the abundance of napkins that we had on the table. We didn’t make a big deal although Stacey and I were both screaming inside. Ben assured us he was ok and that he must have eaten too fast and that he was really excited. We decided that since this was the first and only occurrence we wouldn’t panic. He seemed perfectly fine so close monitoring and no running around would be the order for the afternoon. We went through some of the exhibits in the museum that involved optical illusions. They were really cool and the boys were reading the instructions and trying the experiments. There was a butterfly exhibit going on that we had purchased tickets to enter. They were timed tickets and depended on how many people were in the room at a time. It was a light day so we were able to enter early. The room was filled with plants that fed different butterflies. They also had some fruit on plates. There were hundred of butterflies flying around the greenhouse type room. We walked around, stood still and sat on the benches for a while. I think we were in there for almost 45 minutes. It was really cool to see so many different butterflies. There were butterflies the size of quarters and butterflies the size of saucers with every size in between. We were all hoping one would land on us. We were not allowed to touch them, but, they could land on us. I was holding the video camera when one landed on it. Another time one of the biggest butterflies landed on my finger while I held the video camera. Of course it was the hand holding the camera and Ben didn’t see it in time to get the picture with the digital camera. We all agreed it was really cool to be surrounded by butterflies.          

       

   Next we walked through a couple of exhibits as we headed to the Lightning show in the Theatre of Electricity. I saw this show 20 years ago and I think the same man was doing it then. We were both much younger. The show has the worlds largest Van de Graff generator and some other devices like Tesla coils and Jacob’s ladders in it. It is very loud and there is a great deal of lightning. It is wonderful and the science just presents itself. Here are a couple YouTube clips that other people have online form the same show on different days. The second one is the grand finale of the presentation.    

                       

http://www.youtube.com/watch?v=IJSNiDbob6Q        

                   

http://www.youtube.com/watch?v=MxeLOI_kp_o        

                                 

   They also talked about Ben Franklin and made young girl’s hair stand on end. Ben stayed and asked the presenter about the Tesla coils. After the show the gentleman also passed out sparks. Ben, James and I took turns and stood there with our fists up in the air. The gentleman punched the air above our fist and a giant spark arched between our fists. The boys both jumped because they didn’t know what to expect. The interesting thing was that because they jumped they felt it in their feet too. It was a very massive spark about 100 times greater than you can generate on winters day rubbing your stocking feet on the carpet. Awesome!!! We spent the rest of the afternoon learning about many other things. We moved from exhibit to exhibit like we were browsing a giant science buffet. The boys would be interested in one exhibit for 10 minutes and then fritter past 5. We just let the boys control what interested them. James and I would sometimes go one way and Stacey and Ben another. The boys would get back together and show the other what they found that was interesting. We had a great time and left more to explore for another day.            

          

   We took the T back to the hotel and decided that everyone would take it easy for the evening. We picked up a Playstation 2 with a couple of games and DVD from the front desk for the boys to have in room entertainment. I cannot say enough about the Hotel Commonwealth. It is a wonderful boutique hotel and our room overlooking Fenway Park was only about $50 more expensive than most of the good hotels in Boston. If you are going to a Red Sox game and want to walk to Fenway it is definitely an option to consider that will make it a really special trip.         

          

   While Stacey and the boys were hanging out in the room I went on a walk to see how far away the Gate was that we were to meet Lisa at on Sunday morning. I walked to Fenway Park and it was a pretty easy walk. I knew the boys could do it with no problem. I arrived at Gate A in no time and asked a nearby police officer where Gate D was. He told me which direction to go and off I went. There was a game that was starting 7:30 and even though it was a little before 6 PM the crowd was inspiring. I ended up walking all the way around the outside of Fenway Park. I think the officer thought I said Gate B or thought I was a Yankees fan. I am glad that he sent me around the park because I probably wouldn’t have stumbled on the statue of Ted Williams. I realized as I looked at the statue why our cab driver had choked up earlier. I knew that the Red Sox have supported childhood cancer research through the Jimmy Fund since 1948. I had also heard Ted Williams in connection with the Jimmy Fund at times. I turned the corner and there was Ted Williams putting his ball cap on a little boy with the number 9 on his back. The little boy is smaller than Ben.

                

                

  I thought I did not have to read the plaque to know what I was seeing. I noticed the reverence of many of the fans towards the statue. I overheard a woman say that she visits the statue every time she comes to a game no matter where her seats are. I saw an older gentleman gently touch the little boys head as he walked past. I watched a man pick up his kids to stand on the granite and pose between the boy and Ted Williams so he could take a picture. I heard his youngest (6 or 7 years old) ask, “Why is the boy bald?” As they walked away I heard the man begin to talk about the Jimmy Fund and wondered where that conversation would take them. I cried a couple tears as I read the plaque that said that Ted Williams was known to visit Dana Farber and give the hat off his head to the children who were fighting cancer. I looked at the statue and I saw Ben.  

       

   I walked farther around the park and found Gate D. It was just down Yawkey St from Gate A and would have been easily visible if there were not trees, awnings and a couple of signe in the way. On my way back to the hotel I stopped and picked up Double Cheeseburger Happy Meal for James and a pizza for the rest of us. We ate and relaxed. Tomorrow was the big day.

 

I am working on Game day now…Coming soon

9/13/2008

   The ride was long last night. It was one of those nights where the roads seem to absorb the headlights and the roadspray was emough to keep the wipers going. As we approached Boston the other drivers became more and more aggressve and the lanes of the road narrowed. We decided that you know you are in Boston when the highway starts to feel like an amusement park ride. We arrived here around 10 PM and the GPS worked perfectly. We were all distrustful and looking everywhere for the Hotel Commonwealth - sign, something, anything. When the TomTom said, "You have arrived at your destination." the awning for the hotel was right there. The staff here is wonderful. The boys took forever to fall asleep and they were up at 7 AM. We are off to breakfast and then heading to the aquarium and one of the museums. We will decide at breakfast.

   

   Our room overlooks Fenway Park -

          

9/12/2008

   We brought Ben home from the hospital yesterday afternoon. He absolutely breezed through the 6 days of extremely high dose Ifosfamide chemotherapy. I mean breezed through it. He ate wonderfully the whole time. He walked the halls and went to the playroom everyday. He enjoyed the activities. He roamed the halls with a gorilla mask and furry hand gloves - startling the med students, interns and doctors. The nurses were somehow unflappable. I do have video that I will be getting up on Youtube of him with his mask on.

   

     

     

    

 The first thing he wanted to do when he left the hospital was to go to Circle Diner this trip. Usually it is Friendly's that he craves the most. I think he misses some of his favorite waitstaff that have moved on. After James came home from school I took the two of them to Guptill's Arena and Coney Island - although the real name is Coney Express.

       

   Ben's 3rd grade class sent home get well cards yesterday and they were really touching. A couple of them even managed to get some adult tears flowing. Many of them said that they hoped to see him on onday. Well, Ben was bouncing off the walls last night because he was going to school today. He couldn't wait to surprise them. Last night the boys took showers and made themselves ready for bed. Ben came into our room and said, "Ok, I'm ready for bed." I looked at him and laughed. He was completely dressed with the exception of shoes. As I escorted him to his room I asked what was going on. He replied, "I'm ready for school. I won't have to waste any time in the morning. I'm already dressed." We laughed together and I talked him into sleeping in his underwear. Needless to say when he woke me up at 6 am this morning he was completely dressed. He ate breakfast. Made sure his backpack was ready and was sitting on our front porch at 7:30. The bus doesn't come until 7:50. I am sure he and his classmates are having a great day.

             

   We also received a note home yesterday from the school counselor. It seems James went to her on his own and asked if he could set up the same arrangement he had last year with her. A standing appointment once a week to drop in and chat if he feels he needs to talk with someone and the opportunty to drop in or catch her in the hallway as needed. She sent home a note and permission slip for us to sign authorizing her to provide counselling to him. It was a lovely note formalizing the arrangement. We are so proud of him for using his resources to set up his own support system. We made sure to tell him how we felt. It can not be easy to be in his shoes these days. He is a great brother and friend to Ben, as Ben is to him.

    

   We are heading to Boston tonight and staying at the Hotel Commonwealth. It is the nicest hotel close to Fenway Park. We will be heading to the park on Sunday around 11 am. Ben will be meeting David Ortiz on the field. We are hoping they can get James on the field to, but, it still has not been confirmed that he will be able to be on the field with Ben. I guess there are liability issues or some other red tape. James tells us he understands and Ben has told James that he will talk to David Ortiz about the situation when he gets on the field. Ben also is planning on bringing an autographed photo of himself to give to David. Tomorrow we are going to go to the aquarium and/or one of the museums.

9/8/2008

  Ben has done very well on the chemotherapy front this trip. If he was in a trial I would think he was getting the placebo. We haven't seen any side effects this trip. We are in a section of the hospital we have never been before. The food seems to come up warmer, but, the sleep chairs are just as uncomfortable.

    

   Ben is receiving the drugs through his port-o-cath. So each morning around 9 am an IV bag is hung with the drugs in it. The IV bags are prepared in the special chemotherapy pharamacy at the hospital. On Sunday Ben's chemo showed up with a little something extra on the back of the bag.

      

         

  We often don't think about everyone involved in Ben's care. One of Ben's nurses knew we would be curious and she found out the story for us before we even asked. The chemo-pharmacists get to know the patients through the drugs they prepare. They learn about the kids through web sites and news stories. I can imagine as they prepare the drug cocktails to be delivered they often think about the well beeing of the patients. I can imagine myself saying a little prayer that the drugs be effective and the side effects small if I were in their shoes. The gentleman who prepared this bag saw Ben on news early one Saturday morning. He decided to prepare a special bag for Ben and looked up the drawing on the TV stations web site. He practiced until he could reproduce the drawing and waited for Ben to come back for chemo. He prepared this bag with great care, attention and I dare say love. He told the nurse his hope was to put a smile on Ben's face. She explained to him that when Ben saw the bag he not only smiled, but, absolutely beamed with delight. I know he checks this web site so Thank you very much.

9/5/2008

  The week has been a good week filled with as much of a return to normalcy as possible. There was a little back to school shopping. Visiting with friends the boys hadn’t seen since school was out or baseball ended. I took the boys and a friend to the movies one night. We saw “Fly me to the Moon” in 3-D. It was actually a pretty good movie. The boys loved it and I found myself laughing several times. I also found it amusing to watch the boys reactions to the 3-D and even found myself reaching out to touch something. There were also little details put in the movie that were funny – like a computer chip labeled "In-Smel" instead of "InTel".

       

   The boys and I also had fun with their new 4 wheel scooter-skateboard things. I took a couple of rides to show them how to do it. Wow, I don’t know if I would have survived my childhood if these things had been around when I was a kid. They are a blast, but, it was obvious immediately that helmets and pads were not an option. They boys had a great time getting used to standing on them and pushing off with one foot then coasting a short time. As they get used to them it will be fun to watch what they do with them. When they get real good I’ll stop watching and just make sure they both know how to dial 911. Of course the boys are all padded up and wearing helmets. I am working on finding some comfortable body armor to help protect Ben’s right arm when he is playing sports or just being as active as he wants to be.

      

   Wednesday night was the night before school started. The boys were very excited. Their clothes were all picked out and their backpacks were stuffed with their school supplies. They had both already met their teachers and saw their classrooms. They both had baths. Bath time around our house is always a little funny. It starts with the water being drawn and with the boys being asked, “Who wants to go first?” Invariably neither one of them wants to go into the tub first. They are playing a game or watching a TV show that simply cannot be interrupted. As the water is ready I usually track them down and ask remind both of them the, “The first one gets the clean water.” At that point their previous answers are reversed and the first one to volunteer gets to go in. It’s not completely true because we do usually let most if not all the water out and freshen it between the boys. On at least one occasion after an exceptionally dirty, sweaty summer day I actually cleaned the tub between the boys.

               

   As they both lay in their beds they kept telling us that they couldn’t sleep. They were actually in bed by 8:30. We read to them. We tucked them in and kissed them good night. We ignored them. We talked quietly to them explaining they needed to get their sleep. We ignored them. We made sure the correct lights were on or off throughout the house. We ignored them. We cuddled with them. We ignored them. We closed the curtains and blinds. We ignored them. Finally, James came into our bedroom to let us know that Ben had fallen asleep. I thanked him as I escorted him back to his bed. It was almost 10. I explained to him the importance of getting to sleep as I gently tucked him into his bed and kissed him good night. I sat in the room with him and softly told him to keep his eyes closed and just relax. I could see that he was really tired because he was fighting to keep his eyes open. He was asleep by 10:30. It was so cute to see how excited they were about the next day. I think it was easier to get them to bed last Christmas Eve.

              

  The first day of school went well and the boys told us it was really nice to see their friends and that their new teachers are great. Although, Ben commented immediately that he still loved Ms Hock and Miss Kathy. We went to Applebee’s to celebrate and had a wonderful meal. We didn’t stay for dessert because we had promised the boys to take them out for ice cream. We went to a local ice cream place called “Coney Island.” Ben, Stacey and I all chose soft ice cream while James chose his favorite – Chocolate Chip Cookie Dough. As we ate our ice cream the boys and I walked to the adjacent roller skating rink – Guptill’s Arena. The boys really want to try skating and I think I will have to take them there one of these days. I wish I knew how to roller skate well enough to teach them. I’ll be the on with the pillow tied to my butt.

        

    Stacey, Ben and I finished out soft ice cream as we all piled into my convertible VW bug. The cone they gave to James was huge (ordered a small) so he was still working on it as we pulled out onto the busy Route 9. Traffic was moving rapidly as I entered the driving lane. The top was down so we could enjoy the warm fall night air. As I was speeding up Ben started laughing hysterically. James started screaming, “Make it stop! It’s melting! It’s going everywhere!” over and over. I couldn’t do anything because I was driving and the traffic was enough to keep me stuck in the fast lane. James was sitting behind me so I couldn’t see anything. I looked at Stacey as she turned to the back and saw that although she was concerned she was stifling laughter herself. The warm night air was melting his ice cream as it hit the cone and blowing the ice cream into his face and all over him. She told him to, “Lick the ice cream cone around all the sides faster.” I heard him say, “I’m trying, I’m trying.” I was trying to maneuver my way into the slower lane as she took the cone from him and handed him napkins. She licked the cone as he wiped the ice cream off of his face, t-shirt, pants and out of his hair. He was doing his best to clean up the seats and car too. As she handed the cone back to him he said, “Sorry Daddy.” I asked him why he was sorry to which he replied, “Because the ice cream is all over your seats and car.” I said, “Don’t worry about it. You didn’t do it on purpose and it will all clean up.” He traffic had slowed and we were at the point in the journey home that there were plenty of stop lights. We all laughed about what had just happened as Ben was finally able to recount to us what he had seen as the ice cream started to blow into James’s face.

                    

   I dropped Stacey and James off at the house and gathered the necessary supplies for Ben’s first night at the hospital. He was going in to receive fluids and prepare for the receiving his 3rdround of extremely high dose Ifosfamide chemotherapy. The previous 2 times have worked to shrink the tumors in his lungs. He had a bad reaction the first time. During the first time at one point he became very angry and was crying inconsolably. One of the nurses told me it was the only time she had seen Stacey cry when Ben was in the hospital. The nurses were a little upset as well. Their kind, gentle, always happy Ben was briefly not himself. The effects only lasted for the day because he was fine when I returned that evening. He had made it through that day and was improving steadily thereafter and that is why we went to San Diego instead of canceling his wish. During the 2nd round there were a couple of days when he was a little extra happy and a little extra weepy, but, nothing at all like the first time. We think he will be fine during this time as well.

          

  On the way to the hospital Ben was a little melancholy. I asked him what was wrong. He said that he wasn’t happy about missing school. He missed his friends and not being there made him more of an outsider. I asked him if any of his friends had ever been unkind, made fun of him or treated him differently. He told me that the only one who had was James and that was only once. I asked him about the kids playing with him and he said that sometimes the boys wouldn’t let him play football with them. He didn’t really want to play because it was a little too rough. Apparently when the teachers aren’t looking the boys sometimes tackle each other. He told me the one boy who always seemed to try extra hard to play with him was Noah. I replied, “Noah is a really good friend then isn’t he.” He agreed and said, “So is Zachary.” I asked him if there were others and he started rattling off names that seemed to include all of the classmates he had ever had – “Gabe, Brandon, Gabby, Zia…”. I pointed out to him that it sounded like he had a great deal of nice friends. We rode further and all of a sudden he said something that caused me to do a double take. “I wish there was someone else at school who had cancer.” I asked him what he meant by that and he explained, “It would be nice to have someone that I have more in common with at school. Nobody at school understands. I’m different. I’m bald. I want to be like everyone else.” Wow, in that one sentence there are so many issues.

            

   In that instant I am realizing that my little Benjamin is growing up. I remember when Dr Pearce told us Ben was at a perfect age to have cancer (when he was 6) because he was old enough to participate, but, young enough to not be conscientious. He is 8 now. He has grown 6 inches since this began. He has gone through 1stand 2ndgrade and is starting 3rd. He has lived one quarter of his life with the specter of osteosarcoma surrounding him. In the blink of an eye, as I am driving all of this passes through my mind. It’s a wonder I stayed on the road. I started to talk with him about all of the things he has in common with his friends. It was very easy for him to find things he had in common with others. He found ways that he fit in. He talked about the people who understand and try to understand his experience. We talked about Noogieland and Double H and people outside of school. He mentioned the survivors he knew – Kirk MacDonald from the River Rats, Brendan from the Siena Relay for Life  and Joe from Double H. He also brought up Kylea and Sammie as two of the kids that he knows who have faced cancer. He seemed to be feeling better about  himself and his situation as we approached the hospital. I tried to validate his feelings and we also talked about how many of his friends had expressed to him ways that they feel different from other kids.

 

8/29/2008

   Our day started like most other days. Everyone got dressed and I made breakfast for the boys. It started to differ when we all loaded into the car and headed to Noah's house to drop of James. Noah is one of the boys really good friends. James stayed there will Stacey, Ben and I headed to the hospital for Ben's blood work, CT and bone scans. His bloodwork was fine, although we really didn't discuss it with Dr Pearce. If there was an issue we would have talked about it. Ben had to get the contrast for the bone scan injected at 10:30 for the bone scan that was scheduled at 3 pm. His CT scan was at 1:20. Ben asked the guy who was going to inject him if he was the best. He didn't like the hesitation in the man's answer so he started to cry. Through his tears he said, "I want the best. I don't want what happened in San Diego to happen again." AT that the gentleman left. I think Ben unnerved him. He came back a minute or so later with a gentleman who did a masterful job at finding Ben's vein and injecting the contrast. No more tears and in fact there were a few laughs.

             

  The scans themselves were uneventful. In between we went out for lunch and then after they were all done we went to the clinic to see Dr Pearce. We didn't have time for the very final report, but, the preliminary was that the 2nd round of Ifosfomide worked as we had hoped. The tumors in his lungs have indeed shrunken further. When Ben heard the news a big smile appeared on his face as he sat up straight and his eyes widened. He looked at Dr Pearce and I and said with pride and joy in his voice, "Well, that's good news." Dr Pearce believed that they were now in the operable range. We talked for a bit and then I asked the question on everyone's mind. "So, what about the next steps?" Dr Pearce responded that we could either operate right away or do another round of Ifosfomide and then operate. Stacey and I said almost in unison that we thought a third round made sense. Dr Pearce was happy that we agreed with her even before she actually proposed it to us. I think we all just new the answer in everyone's minds. So Ben will be going to school on Thursday and then Thursday night he will be admitted to the hospital to start the chemotherapy on Friday. He will receive it for 6 days, finishing on Wednesday. He will then be released from the hospital we will give him a drug that boosts his counts, give him a blood transfusion if it is necessary on 9/12 and go see the Red Sox and meet David Ortiz on 9/13. Dr Pearce said, "You can always drive him back from Boston if you have to. No Medevac planes." I replied, "Heck, we'd probably have ambulance drivers, EMTs, doctors and nurses ready to drive him to and from the park if we had to."

         

   So the news is great. At this point we couldn't realistically imagine much better. As we sat in the car and I pulled out of the parking space at the hospital Stacey started to cry. Ben told her to stop crying. She said, "I can't Ben these are tears of joy. Sometimes mommies cry because they are happy." I added smartly, "and sometimes they just cry." Ben seemed to understand and the mood in the car on the trip to get James and come home was one of joy and jocularity. Thank you all for being there for us throughout this journey.

8/25/2008

   Friday we decided on a spurr of the moment to head to Aunt Carol's cottage on the north shore of Lake Carmi in Northern Vermont. If you look on Google maps you will see that it is 1.8 miles from the Canadian border. You can't go much further north and still be in the US without going to Maine or Alaska. Unfortunately, I had no internet access so no updates. We had a great time. They boys were a great deal of fun and they really love the area up there. Although, they were not thrilled with the strong smell of cow manure that seemed to permiate the air. It seems that the farmers all decided to spread liquid, organic fertilizer on all ot their fields in our honor. It didn't help when I proclaimed to the boys, "That's how you know when you leave NY and get into Vermont." When we returned to NY the first thing they wanted to do was roll down all of the windows. I kept telling them their "city slickers were showing." Ben and I went out onto the lake in a row boat on Saturday evening. The sun was getting close to setting and the sky was turning pretty colors. He looked at me as I rowed and said, "Isn't this wonderful. Just you and I out here in the middle of the lake alone. Just the two of us with a beautifual lake and a beautiful sky. It's perfect. This is the best time ever and I will always remember it." I just agreed with him and we sat out there for a few minutes and just quietly enjoyed each others company. We rowed back together. I "helped" him row since I rowed us out. When we arrived at the dock Stacey came out to help us get the boat in. He proclaimed to her what a wonderful and special time the last 30 minutes ot so had been for both of us. She helped him out of the boat and he ran into the cottage to tell James all about it. She looked at me and saw that I was all choked up and tearing a little. She asked, "Are you all right?" All I could say was, "Yes." She took the oars and I climbed onto the dock as she helped steady the boat. I pulled the row boat up onto the dock and told her it was everything he had said and more. It was literally a few minutes that last a lifetime, if not eternity. The next time I am asked to quiet myself and recall one of the happiest most peaceful moments in my life it will be the middle of Lake Carmi in an aluminum rowboat bobbing up and down with the sun close to the trees on the horizon as a little bald boy smiles at me and says, "Isn't this wonderful?"

                

   We aren't going to have much news about Ben and osteosarcoma this week until Friday. On Friday he will be going to Albany Med for scans. He will be getting blood work, a CT scan, x-rays and a full body bone scan. Our next steps will all be decided after we have the results. We will talk a little with the Dr Pearce on Friday and the real planning will take place after Labor Day. In the mean time we will be having as much family fun as we can squeeze in around work and other necessities.

            

  One last thing tonight. I know many of you will be travelling this week and will most likely be eating out at a restautrant at least once over the weekend. Between Labor day weekend and the end of September I would like each of you to go out to eat at a Carrabba's Italian Restaurant. They are a national chain that tries to really support their local communities unlike any national restaurant I have ever seen. When you go into the restaurant please ask to speak to the manager on duty either before or after your meal. When you meet the manager please thank them and tell them that the reason you came to Carrabba's to eat that night was "because of the support that the Carrabba's in Latham NY has given to Ben Stowell a young boy with osteosarcoma." If you live in Latham feel free to do the same thing. You may even catch our family eating there. I asked Tad, one of the managers, at the Latham Carrabba's if I could do this and he thought it was a wonderful idea. If he actually hears back from another restaurant he will let us know. It is an interesting experiment. Thank you for helping us thank Carrabba's for the huge amount of support they have given to Ben and our family.

               

8/22/2008

  Ben has been to the hospital twice this week for blood counts and both times his counts have been really good. His platelet count was low, but, not low enough to require him to receive any units of platelets. We have had a simple week that has included relaxing at home, playing games, swimming and a few other low key around the house activities. the trips to the clinic at the hospital always end up chewing up a good part of the day even without transfusions. Ben has enjoyed a very uneventful week with his brother. They have both been indulged a little bit with a couple of trips to Target and Toys R US to use gift cards and spend some of their own money. I think they both ended up with new Nintendo DS games. We have ha a number of visitors pop in to say hi and enjoyed the company of our neighbor Aiva. I am not sure who has more fun with her, Stacey or the boys. I wish I had a story to write about some amazing thing the boys said or did this week. On the other hand it is nice to not have much to write about the goings on within the Stowell household.

        

   We do have something absolutely wonderful to tell you though. I haven't said anything because I am still in disbelief and part of me is afraid to put it in writing for fear the opportunity might disappear. It appears that for several months now a friend has been working with her family members to make one of Ben's dreams come true. We received news that she accomplished her goal and through the help and connections of her family we will be going to a Red Sox game at Fenway on September 13th. I have no idea where the seats are or even which game on that day it will be. I kind of missed some of the details because my legs actually buckled a little bit and I had to sit down.  After mentioning going to the game the news that flabbergasted me is that Ben and James will get to go on the field before the game and meet David Ortiz. Ben absolutely loves David Ortiz. I immediately thought of a conversation that I had with Ms Hock Ben's 2nd grade teacher in the Spring. She took me aside one day when I ws picking up the boys at school. She asked me if Ben was going to see David Ortiz. I said, "I don't think so. I know he would love to meet him, but, not to my knowledge. Why?" She told me that he had spontaneously come up to her and told her in no uncertain terms that he was going to get to meet him. She said his conversation was matter of fact as though it was a done deal. It seems that once again Ben was showing his prophetic wisdom. When I asked him about it at the time he simply told me, "I know I will get to meet him someday. He is a great man." I am looking forward to seeing David Ortiz meet Ben and James. I will tell you more as the details unfold and you can bet there will be pictures and video galore. Ben is trying to decide what items he is going to ask David to sign for him. One of the things he has told me he wants him to sign is the top of his bald head.  

            

 

8/15/2008

  Ben is at the hospital right now receiving 2 units of red blood. We only expected him to be receiving 1 unit so we were a little surprised. Stacey took Ben down to the hospital early and dropped James off at a friends house on the way. Ben had a finger stick and they checked his counts. Ben's port-a-cath was accessed by the nurses at the clinic. They were in the clinic for a while. It was really busy. It is amazing how many kids they are serving. We have come to know several families during these 2 years. That's right we are approaching 2 years. I don't think Labor Day weekend will ever be the same for me now. Ben should be done receiving the blood around 5 pm. The boys and one of their friends are planning on going to the movies tonight. They want to see the "Clone Wars."

          

   Ben is really doing well this time around. We took them clothes shopping last night for their back to school clothes. We really needed to because they have both grown so much over the summer. Stacey went through all of their clothes a couple of weeks ago and we had a surplus of clothes that no longer fit them. It was nice to be out as a family doing normal family stuff. We were working our way through the racks when I overheard 3 women talking about an adult being diagnosed with an advanced stage cancer. Their conversation was very frank as the discussed his prognosis. I wasn't totally paying attention because I was looking at raincoats for the boys. Besides I don't need to hear that stuff. I was kind of looking their way when Ben came bursting around the corner saying loudly, "I want something really funky, something that is bright and fun." Two of the women were looking our way and they had a look on their faces that was very interesting. Their conversation stopped immediately and the 3rd woman turned to see why they were reacting. Ben was oblivious and acting up with James playfully like boys will do when they have had enough clothes shopping. I could tell the women's world was rocked. I am not sure what they talked about next because we moved on. I can tell you that their looks were a combination of tenderness, concern and surprise. At least one of them was definitely a mom. Here they were talking about someone that was slightly removed from them who had cancer and then a little bald boy slams it in their faces like a pie with laughter and a smile.

8/14/2008

    We have had a slow week. It has been nice to not have anything really newsworthy until yesterday. I meant to post the results of our visit to the outpatient pediatric oncology clinic, but, when I arrived home from work I laid down and didn't get up until this morning. I didn't even bump my head. I may have been snoring. I received a phone call today from my sister. She said, "What's this with no updates!? You're killing me here." I am sure she is not the only one feeling that way.

      

  Ben's hemoglobin is dropping so he will be receiving a pint of red cells tomorrow. It was not unexpected. The chemotherapy has besically wiped out the ability for Ben's bone marrow to produce blood cells. The chemotherapy targets rapidly reproducing cells. It targets the cancer cells, but, it also affects other cells as well. That's why his hair has fallen out. He is still feeling pretty good. We have noticed some periods of euphoria and sadness. They come and go and are not to extreme. He is funny when the euphoria kicks in. He laughs at the drop of a hat, literally. Not as much fun when the sadness happens. He cried yesterday over a Nintendo DS that he threw up on Monday. It broke, but, we replaced it on Tuesday. He was fine with it and even very happy because the new one is slightly improved (I guess). Wednesday we found him in his room with the old Nintendo DS crying over it like it was hurt bird that he shot with a pellet gun. He was telling us that he knew it was just a thing, but, he couldn't help himself. It was just so sad that it didn't work any more and that he was the cause of it not working. After a few minutes the mood passed and he was back to normal. We talked with Dr Pearce and she was not at all surprised. In fact she brought it up. She asked us if we were seeing any psychological side effects. I guess we are getting off lightly on this one. The episodes are less frequent and less intense.

      

  I have been asked a couple of times about the Carrabba's fund raiser. I think it was a big success. Thank you everyone. Seeing the people who turned out and hearing about everyone who was there during the time I had to leave. August is a tough time because so many people are on vacation or just travelling on the weekends. We received a check today from the Sagnelli's from the Vally Cats baseball game fundraiser - $780. Thank you Sammie and Angie you are both amazing. Ben absolutely loves the fact that he was able to throw out the first pitch.

8/10/2008

    Ben is home now. We arrived home late this afternoon. He completed the ifosfomide around 10:30 this morning. His hemoglobin (red blood) counts had dropped so he ended up recieving a blood transfusion. It takes about 4 hours for the actual transfusion. We had to wait for a while before the blood was typed and tested to make sure it was correct for him. We were packed and heading to the car around 5 pm. It is wonderful to be home with everyone within these walls. I am looking forward to heading to bed in a few minutes. The boys are already sleeping. Ben has been nauseous since since around 8 pm. We gave him some medicine and he is resting nicely now. He got sick a couple of times.

            

  Earlier today Ben and I had an interesting conversation. We were talking about one of his counselors at Double H - Joe. Ben told me that Joe was his favorite. I asked him why and he said, "Because he gave me the courage to climb the cargo net in the ropes course when you weren't there." As he said that I recalled what one of the other counselors had told me about Ben and the ropes course. They werew trying to get him to go up a path in the ropes course called Tippy-Canoe. She said that Ben refused and said he couldn't do it because his "Daddy wasn't there to give him the courage he needed." From talking to Ben I found out that Joe stepped up to the plate and encouraged Ben to try the alternate path of the cargo net. Ben also told me that he didn't realize during the week that Joe was a cancer survivor. He found out when I read the posts in the guestbook from Joe to him. Ben and I talked about cancer survivors. Ben said, "I have a few people I know who are cancer survivors - Joe, my guitar teacher and the player from the RPI and the River Rats who is my friend and  Brendan from Siena and San Diego. Isn't it neat." I said yes and asked him what it meant to him to have these people and other survivors in his life. He replied, "It is important and wonderful because they are my future. I am going to be a survivor too."

           

  In that light I would like to share a video that Ben and I created in the hospital. It is a really a trailer for a larger production he wants to create. I am still working on the details with im and will update you if it develops.

       

Hospital Clone

8/8/2008

   Today is a special day. It will be 1000 years before we have another 8/8/08. Come up with 8 things to do that are either our of the ordinary for you, selfless or just plain fun. If you have an idea or do something neat make sure you tell us about it. It's an excuse to celebrate life.

          

   Ben is doing really well. The last couple of days he has been a little extra emotional. He went through periods of being weepy, he even cried a litlle because of a TV commercial. I took him outside yesterday for about 10 minutes of air. As we walked back and forth under a brick portico type structure by the D building doors he started talking about school in September. He asked me if I thought his hair would grow back by then. I told him I didn't know and asked him why he was concerned about it. He said he wanted to wear a wig or hat when he went back to school if he was still bald. I asked him if anyone made fun of him last year at school or if someone had said something. He told me the only person that did was James - his brother. I responded that James was just trying to be funny and was acting like a brother. We had talked with James at the time and thought it was behind us. He was quiet for few seconds and then dropped a bombshell, "I just want to be normal again, like James and the other kids." I thought, "Where is Mrs Satterlee when I need her? What would she or that Randy guy say?" I reiterated his answer to my previous questions about the way people treated him at school. I said, "Your friends love you for who you are as a person not whether or not you have hair. I understand how standing out can sometimes make you feel uncomfortable or out of place. When you lost your hair last year did Gabe or Cameron or Zia treat you any differently?" He replied, "No." I then said, "They are just a couple of your friends think about all the others. If it makes you feel better about yourself and going back to school we will get you a wig. I am sure you will get the same permission to wear a hat in school that you had last year. Ben you are still Ben whether you have hair or not, just as I am your Daddy whether I have hair or not." He smiled up at me and said, "Yeah, I know." We were qhiet for little bit and then the conversation moved on to something else.

               

   There are several new nurses that we are just meeting for the first time. Ben has been getting his favorite nurse from the Pediatric floor, not the outpatient clinic, during the day.It seems that the nurses have all told stories about my crazy pajamas. A couple of the nurses have even requested a specific pair. One nurse said to the other one the other night, "I like the ones with the flames all over the bottoms and the flaming Superman logo on the top." I haven't worn those yet this trip. Ben still get's a kick out of it, but, not as much as when he was 6. I guess the surprise value shrinks as you get older. It isn't at the stage yet where the crazy pajamas would embarass him. We received a pajamagram the other day. Bens new pjs had little dogs all over them. The pajamas for me had different colored dog bones all over the pants and the shirt said, "dog's best friend" with a big pawprint in the center of the chest. Ben thought they were cool. I thought they were very comfortable. Thank you for the pajamagram, you put a smile on Ben's face.

             

   Tomorrow is the big fundraiser at Carrabba's. We are disappointed, but, there is no way that Ben is going to be able to make it. It was herculean effort just to get far enough out the front door to get some fresh air for 10 minutes. He had to be disconnected from the chemo because it can't go off the floor. The doctors had a discussion about whether or not the chemo flow should be stopped. It was decided that 15 minutes would be ok. When we returned to the room - with 7 seconds to spare - they increased the flow for a little bit to get him back on the schedule. We are looking forward to seeing some familiar faces.

       

   Ben is doing really well and last night the weepy/funny behavior calmed itself and he was not acting strangely this morning when I left. That's strangely for Ben. If you didn't know him or spend a lot of time with him you probably wouldn't notice the behavior. We have learned to watch him like a hawk and Stacey and I compare notes with every shift change. We also make sure to talk with doctors. There are so many reactions the kids can have from the drugs they are given. Speaking of reactions. Today at 2:30 they are doing henna tattoos for the kids. We are not really thrilled with that and Ban may not be participating. I explained to Ben that his Uncle Jay had an allergic reaction. I told him, "After he had it on his hand for while he had an allergic reaction and he ended up in the hospital." To which Ben said, "I'm already in the hospital."

8/5/2008

   I had to double check to make sure I had the right date and day of the week. Thank god for cell phones and computer calendaring programs. I am starting to rely on a little thing called a PocketMod to keep myself on track. It's a low tech way to fit a ton of information in your pocket and it's free - http://www.pocketmod.com

Those that are really close to me will be surprised that I am suggesting anything low tech.

      

  Ben started receeiving the actual chemotherapy drugs yesterday. We talk about it by using the main drug ifosfomide. It is easier than cataloging all of the drugs he is actually receiving in order to make the treatment tolerable. He also receives a huge amount of fluids during the process so he is peeing a great deal. It makes for interesting overnights. When Stacey showed up this morning she thought he looked a little puffy and his face was a little red. I don't think anyone who didn't spend a great deal of time with Ben would notice. It is not uncommon for a some fuid retention to take place, but, they monitor the outflow and his weight to make sure he is not retaining more than expected. A slight change in color is also not unexpected. Again it is something that is monitored along with his vitals. They are also doing frequent urinalysis tests to make sure the drug is moving through his system and that there aren't any signs of kidney damage. He seems a smidge quieter today although I just received a call from the hospital reminding me to bring him some fried chicken. He drove me nuts last night talking about fried chicken. I couldn't find any place that would deliver it to the hospital and it was too late to call one of you guys just for fried chicken. Igot him to eat fluffernutters and chicken noodle soup ionstead. The really amusing thing about it is that other than chicken nuggets, chicken fingers and chicken tenders he has never eaten fried chicken. Everything is going well.

             

  I have heard from a few people the announcements for the Carrabba's fundraiser this Saturday (8/9) for Ben have been showing up in unexpected, but, not surprising places. I am sure Kris and Katina have been getting some crazy calls as they have posted their phone numbers on the signs.

8/4/2008

   I think it's official I have finally lost it. I could have sworn that I had made an update or 2. I think I must have done it in my dreams. What a full weekend. I will start with the present and work backward. Ben is in the hospital. He was admitted yesterday and was given fluids overnight and they did a baseline urinalysis. Today he began receiving the ifosfomide. He is feeling really well and seems to be tolerating it wonderfully. He won't eat the food here so we are making campbell's chicken noodle soup, fluffernutters and bringing food in for him. So far he is eating well and everything is working as it should. They brought in a Playstation 2 for him to play with and he is working away on the Fantastic 4 game. He is up for visitors and feeling good. This afternoon he played Clue in the Actvity Room with his mom, Aunt Sandy and Uncle Drew. While they were playing Bugs Bunny, Daffy Duck and Sylvester came to visit. There were a great deal of shenanigans. We took pictures and I will post them to the Picasa album tomorrow after work.

        

  Yesterday (Sunday) Ben went to church with me, Aunt Sandy and Uncle Drew. Communion was served as part of the service. The Bread and Wine (grape juice) were served to the congregation by the ushers. When it came time drink the cup Ben knocked it back and as he brought the cup down let out a soft, refreshing "Aaaahhh." I'm not going to take the time to explain communion, but, I'd like to think that God considers that an appropriate reaction. May the life that was in him, be in us also.

          

  On Saturday we finally had the chance to have the boys birthday party with their classmates. When we went through the class lists with the boys James would pick someone, Ben would pick someone else and then they'd both pick somebody. There is a boy in Ben's class who only speaks Spanish fluently. Ben asked to invite him so he was added to the list. A couple of minutes later Ben said that we needed to invite a girl that was in his class because she speaks both english and spanish fluently. He didn't want his friend to feel uncomfortable. She shattered the girl barrier. We had originally intended it to be a "Boys Only" party. Before you get upset at me that wasn't my idea. Once the girl barrier was crossed the list increased. We ended up inviting 38 kids. Only 28 showed up at Chuck E Cheese's for the party, along with 18 or 19 adults. It sounds like a huge party, but, when you consider that it is for 2 independant 8 year old boys and it isn't that big. Everyone seemed to have a great time and it was relatively stress free for Stacey and I. Instead of accepting gifts the boys asked people to bring items that we could bring to the CHildren's Hospital at Albany Medical Center to be used in the Holiday Shop or at the Child Life Specialist's discretion. The Holiday Shop is set up in a conference room in December.  The kids at the clinic get to go through the shop and pickout a present for their family members. The staff even gift wraps it for the kids. The Child Life specialists will often use the items during the year to make a child feel special or help smooth over a rough spot in the treatment. We all know how a surprise gift can brighten a child's day. Or to help a child do something nice for their mom or dad.

           

  Friday was the return trip from Double H. Ben had an amazing time and I will be adding a page to this site about it. This year he actually took pictures so I will have something to work with. Since I am going to be doing the overnights next week when Ben is back in for his ifosfomide I will have him captive and can interview him about Double H. It will also give me something to do with him in the hospital room. On friday night there was a baseball fundraiser wiht the Valley Cats. They lost, but, that didn't matter. It was a fundraiser for Ben and 2 other great kids who are fighting the evil alien - Sammie and Luke. Sammie has completed her treatments and is doing really well. The fundraiser was originally going to be for her, but, she asked to have it for Ben and Luke too. The best part was that all 3 of them were there and they each had the opportunity to throw out the "first" pitch. Ben threw out the first first pitch of the game. It didn't reach the plate, but, nobody cared - not even him.

          

  I almost forgot something. On Saturday morning Ben and I got up really early and headed to the WNYT TV Studios - Locally known as Channel 13. Ben was interviewed LIVE on the Weekend Morning Show about the Green Drakkoman. He really enjoyed it. I sat next to him for moral support. I really don't like how I look on TV. Ben was great and surprisingly relaxed. When the producer called me I told her we would do it and asked when it would be taped. She said, "It isn't taped Mr Stowell. Ben will do the interview live." I replied,"Wow, you guys are brave interviewing an 8 year old live." She fired back, "That's why you will be sitting next to him." They showed us around the studio quickly and we were able to stick around and watch how a TV news show is done. I don't think people realize how much really goes into a broadcast. It's amazing there aren't more bloopers. I have a copy of the interview. I have to figure out how to get it on the web site without violating the Digital Millenium Copyright Act.

7/29/2008

  I want to take advantage of this slow news day to thank you all for everything you have done and are doing for Benjamin and our family.  Last night I took James to Noogieland. If it is Tuesday and either of the boys is any where near Latham you know where to find us - at Gilda's Club. Last night James and the other kids went outside and had water battles and played on a Slip 'n Slide. It was a great time and the children were all running around wet and wildly laughing as they tried to give soaking hugs to the program coordinator. James was thrilled because the evening's activities were inspired by a suggestion he had put in the activity suggestion box. I have decided that one of the most perfect jobs in the world has to be an elementary school physical education teacher. I am sure there are many stress inducing duties and a vast amount of paper work. I am also sure that watching children play with complete abandon and absolute fun is magical. Last night I had the chance to experience the magic and realized as I was watching I need to allow more of that magic to happen within my own life. I also need to foster it more and more with Ben and James. I have been a little cranky lately.

           

  So many of you have done wonderful things for us during this time. I hesitate to try to name folks because I often get the details wrong or miss someone who was an integral part of something wonderful. I can never say enough about the folks at NCYBA especially Jamie who put together fundraisers and have been bombarding our family with support. Youth sports leagues sometimes get a bum wrap for taking their sports too seriously. I can tell you that the individuals and parents at NCYBA take one thing seriously besides baseball. In all things they put the children first. The goal is to foster growth in the children and love of the game of baseball. The goal is to use baseball to teach the players about life. The goal is to let the kids have fun in spite of their parents and adults. I have seen some pretty amazing things at NCYBA and watched children become friends as they playred together and formed a team. I have watched children reach out to each other in ways that were just simple and sweet. These things only happen when parents and adults get out of the way and encourage the inate behaviors of kindness and friendliness that I think all children possess. We all just want to get along in the world.

      

  I am also thankful for those of you who have come out of the woodwork to support us. We have heard from old friends and family members that we haven't seen in decades not just years. It is so easy to lose touch with others as we grow older, move away, job changes and life changes. It is not that we intentionally stop seeing people. It just happens. he amazing thing for us has been although we haven't seen folks in a very long time our friendships are not forgotten. They are celebrated. It is as though we were never apart. Friends com and go in our lives, but, we have found that friendship really is forever - as is family. We have also found that wherever you go you have friends and family. You just need to see them and recognize them. That was the biggest lesson of the trip to San Diego. We found family that was there to remind us that blood is blood and family helps family no matter what - Cousin Betty. We found family members of friends - Loretta's sister - Ellen's brother - John's brother - who were there to represent our friends with whatever we needed, we only had to ask. The new and instantaneous friends we made while there who showed us that kindness and love are always around us if we are open to the possibility - the Kite man, the kid's in the pool, the nurses at the hospital, the San Diego firefighters, Jose (the man responsible for keeping the hotel pool deck spotless), the kids in the pool on any given day and James the volunteer from Make-A-Wish.

          

   We have had friends call, sometimes at really odd hours of the day and night. Reaching out to say they have been thinking of us and just felt the need to call. These calls have happened at the perfect times. Conversations steering towards topics that seemingly have little to do with our situation, but, end up giving us inspiration, strength or courage that is necessary or just a few moments of laughter and joy. Receiving a quilt handmade with love and prayer that Ben can wrap himself in to feel comfort and the warmth of the love and prayers of others. Opening a package addressed to the boys and finding hand made pajamas, baseball memorabilia or t-shirts from a championship hockey team. All of these things are tokens of love and end up meaning so much to us and to Ben in particular. Thank you Elaine and Aunt Carol. Thank you Olsens. Thank you Cousin Susan. Thank you everybody for all that you have done and are doing for us. When you ask me how we are able to get through this nightmare with the relatively positive and graceful manner the only answer I have is to tell you to look in the mirror. All of you continue to allow us to lean on you for strength, guidance, support, courage and even things we didn't know we needed.

           

  In closing of this very long post I will mention Double H. We have no idea what kind of time Ben is having. We imagine it to be the "Best Day Ever" at Double H. We are completely out of touch with him and in fact the only reason we would hear anything this week would be if something bad was happening. So no news from Double H is fantastic news.

               

   Last year and every year at the end of camp all of the children and counselors gather at the waterfront after dark and sing songs. It is really late and dark as they light "wish boats" on fire and push them out into the water. As the wish boats burn carrying their wishes to the heavens they sing a song with one voice that will forever bring tears to my eyes. Please read the lyrics below with the image of a dark adirondack night. Watching small floating bon fires sowly move away from shore towards the center of a lake. First you hear one adult voice start the song and then you hear a couple of other join in. As the first line of the song ends the voices of 120 children, all of them facing life threatening illnesses, are added. It is sung solemnly, but, within the tone you hear joy not sadness. You realize they are celebrating friendship and singing it to each other - meaning every word. You cannot see the individuals singing because it is too dark and they are too far away. As the boats burn they sink into the water and you see them disappear from view. You know in your heart that as the children and counselors are singing they are hugging each other and swaying. Perhaps some of them are crying, most of them are smiling. You can hear it in their voices. You look around at the parents and family members standing around you on the road above the waterfront and realize there is not an adult with a dry eye in view.

           

   

Sometimes in our lives we all have pain
We all have sorrow
But if we are wise
We know that there's always tomorrow

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on

Please swallow your pride
If I have things you need to borrow
For no one can fill those of your needs
That you don't let show

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on

If there is a load you have to bear
That you can't carry
I'm right up the road
I'll share your load
If you just call me

So just call on me brother, when you need a hand
We all need somebody to lean on
I just might have a problem that you'd understand
We all need somebody to lean on

Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on

Lean on me...

            

  On Thursday night when we are at Double H for the talent show and wish boat ceremony osteosarcoma will not be what we will be thinking about. We will be surrendering ourselves completely to the moment. We will be celebrating joy and happiness during the talent show. We will be celebrating friendship and love during the wish boat ceremony. I know I will be thinking of all of you as I hear their voices rise from the lake.

   

Thank you!           

   

7/28/2008

  During the past week Benjamin's progress has been amazing. His counts rebounded and he is in a range considered normal - low, but, normal. It was time to take him to Double H Ranch in Lake Luzerne. It is an amazing place. The camp is set up to give kids who are facing life threatening illnesses with an opportunity to have fun and experience summer camp. They have a 2:1 camper:counselor ratio, but, with the activity counselors and volunteers it is almost 1:1. The camp is so wonderful they have even figured out how to let a child confined to a wheel chair in everyday life an opportunity to experience a high ropes course. On Sunday morning we had planned on leaving at 9 am. Ben was still sound asleep at 9 am. A little after 9 I was walking quietly towards their room and I heard James softly saying to Ben, "Ben...you need to get up. It's getting late and I know you want to get to Double H. Ben wake up. It's time to go to camp." He was nudging him slightly and trying to wake him as gently as possibe. I just watched as he woke him up. We got everyone dressed and headed towards Lake Luzerne. We stopped at Snyder's in Clifton Park for breakfast. Ben was smiling the whole trip. He said at least 3 times that he was excited and couldn't wait to get there. When we arrived we were greeted by counselors and escorted to the Adirondack room for registration. Several counselors greeted Ben by name. The counselor that was escorting us looked at Ben and said, "You're Ben...the Ben....Ben Stowell? I am so glad to meet you and I'm one of the Muskrat counselors this week." Ben is in the Muskrat cabin again this year. As we approached the building the Adirondack room is in the door burst open. A beautiful tall young woman with  mane of brilliant red hair came charging towards my children arms outstretched bellowing, "Ben, you're here! You made it to camp! Ben, you look great! Yayyy Ben!" She embraced him and then moved on to James telling him how great it was to see him too. The boys were all smiles as they hugged her back. She then lead the charge of the children back to the building and announced in a very large voice that "Ben Stowell is here." Before Ben even entered the room the applause and cheers was deafening. We checked him in and he headed towards the Muskrat cabin. On the way we met Dr Porter and she commented on how great he looked. I think the idea of going to camp helped him recover much faster than he might have. We brought his suitcase into his room and unpacked a little while he and James talked to the counselors. Two of his favorite counselors are Muskrats this week and the Muskrat theme for the week this year is "Happy Holidays." So they were wearing Santa hats and decorating the cabin with lights and Christmas decorations. We hugged and kissed goodbye and as we were leaving I looked back and there was Ben talking to a young boy who had just arrived. This was his first time at camp. Ben had his arm around him and was walking him into the cabin. I heard Ben say, "You are going to have so much fun. The counselors are great and they make sure we all have fun. I'll be here if you need any help."

 

I have posted pics in an album on the Picasa site of us during the drop off at camp.

     

While Ben is at camp James is going to a Science camp at the Children's Museum of Science and Technology. It is near where I work so I can drop him off on my way to work and he stays extra time in the aftercare program. He loves the museum and we are members. He told me today was great.

    

When Ben gets home on Friday we will be going to the Valley Cats game. Saturday we are having a birthday party for the boys at Chuck E Cheese with many of their classmates from school. On Sunday Ben will be admitted to Albany Med and he will be starting the Ifosfomide again on Monday. He will be getting the chemotherapy over the course of 6 days and we will be monitoring his counts and vitals very closely. No trips after he receives the treatment.

      

7/24/2008

  There are new photos on the Picasa Green Drakkoman site. Last Sunday there was a fundraiser at the Price Chopper near our house. It was wonderful to see the community supporting Ben. I was interviewed by Capital News 9 during the event. I was asked about what raising the money meant to us. My response was, "What is most important is not the money. It matters to me because I know how much everything costs and I am responsible for making sure the bills are paid. What is most important is what matters to Ben. Ben doesn't see the money. He sees the people wishing him well. He sees the support, love and caring. He sees his friends and other kids smiling and having fun as they reach out to help. Not just with money, but, with friendship." Most of the response didn't make it to TV. Julie and Donny worked really hard to pull this off. Julie did a wonderful job of co-ordinating the event through Price Chopper and there were smiles everywhere. The stories people have told us about their own struggles and those of their families and friends can't help, but, touch our hearts.

        

   One story I want to share is that of a young man who is also named Ben. I think he is a year older than our Ben. The 2 Bens played baseball this year with NCYBA on different teams. Ben had heard Benjamin's story and decided that he was going to give the money that he was saving to buy a new game for himself to Benjamin. He also took time to help take up a collection from friends and adults. Ben O is a Yankees fan. He knew that Benjamin was a Red Sox fan and even so he wanted to do something more. He worked with his mother and reached out to the Red Sox to see if they would help him do something special for his new friend while we were on Ben's Make-A-Wish trip. Ben O. wanted to surprise Benjamin when we came home. Nobody anticipated he would get extra time. The Red Sox listened to Ben O. and they made arrangements to get him some photos, a ball, a hat, a David Ortiz youth jersey and a tablespoon of dirt from Fenway. A memorabilia collector who new Ben O. was inspired and gave Ben O a signed photo of David Ortiz to give to his friend Ben. The response from the Red Sox was so genuine and heartfelt that the whole family of Yankees fans can no longer say that they "hate" the Red Sox. Sorry to shock some of you, but, that is what I was told. The rivalry needs to exist because it sure makes the season more interesting.

        

   Another amazing young person is Sammie Sagnelli. Sammie is young girl who was diagnosed with Lymphoma. She loves baseball and the game of softball even more. She is a fighter and her lymphoma is in remission. Her sister is working for the Valley Cats this season and arranged to have a fundraiser for Sammie. Sammie decided since she was doing well and she no longer needed chemotherapy she wanted to help some other kids too. She asked her parents and her sister if the fundraiser could be used to help Benjamin and another young man named Luke Romano who is fighting an aggresive form of Leukemia. Ben met Sammie's mother the day we found out his osteosarcoma had returned. Sammie is the niece of one of my co-workers. Ben knew she was in the hospital and wanted to go and meet her. He wanted to answer any questions she had and offer to help her so she wasn't afraid. I took him up to the floor while we were waiting for his scans. Sammie's immune system was down so he couldn't go into her room. Instead he talked with her mother for about 20 minutes. On August 1st at 7pm in Joe Bruno Stadium the baseball fundraiser will take place and it is hoped that all 3 kids will be able to throw out the first pitch(es) of the game.

     

  Ben is doin really well. In fact his body seems to be pretty much fully recovered. He is still gaining strength and stamina. His feet aren't swollen and his tummy isn't distended any more. The dostors are thrilled. On Sunday Ben will be heading up to Double H Ranch. He will be there until Friday. On Sunday August 3rd Ben will be admitted to the hospital and his next round of chemotherapy will begin. We know better what to expect this time so we aren't planning any major trips.

            

7/23/2008

   Yesterday we had a very interesting birthday day. A plain old routine day. Daddy went to work. Mommy ran some errands. GrammaMac watched the boys as they played with legos, computer games, watched TV and just generally hung out. Before I left for work we opened the gifts that the boys received from Ben's Chemo Angels and some cards from relatives and friends. The Chemo Angels are a group of folks who adopt people going through chemotherapy. They send cards and letters at least once a week and occassionally send care packages. Ben has 2 angels that are his and then periodically receives cards and notes from at least 3 other angels. You can find out more information at http://www.chemoangels.com They put a smile on Ben's face every time he receives something. They even remembered to include James on their birthday and 1 of them sent me a Father's Day card. We truly are blessed with a multitude of angels on this earth. I have read that the word angel means messenger. Everytime you guys reach out to help us and others you are bringing or reinforcing a message of hope and caring. hat is why I keep saying that you are all angels. I love the story of one of the Dads at the Applebee's fundraiser looking at Ben's drawing of the Green Drakkoman and saying, "Look, the Green Drakkoman is an angel." I had not seen it until the story was told to me.

       

  The boys had guitar and drum lessons from 4 - 5 pm at Rock 'n Learn. After I came home from work a couple of close friends and family members came over and we had a quick dinner of pizza and wings. We opened presents and cards from family and friends. Then we did the birthday cake. The boys ate their cake quickly so we could make it to Noogieland at Gilda's Club. Here we were going to have a family party for them and they opted for Noogieland. Boy, do they love that program. I cannot say enough good things about the staff, volunteers and other members at Gilda's Club. They even had cake for the boys there too. It was movie night and the kids all watched "Shrek" as they lounged on bean bag chairs eating popcorn and cake. We are planning on having a birthday paty for the boys with some of their friends on another day. The whole San Diego trip and Ben's recovery messed up our earlier plans so we are regrouping.

        

  When I was at work this morning Stacey called. It seems Ben was concerned because we did not know when Mocha was born. In case you don't know Mocha is our chocolate lab. She told him that we could just pick a day and that we knew approximately how old she was in years. He suggested they pick a day during the summer and start planning a party for her. As he was telling her the details he said, "I know just what kind of party to have for her." Stacey quizzed, "What kind of party?" He replied with a great big smile,"A poker party." Stacey cocked her head and said with surprise, "A poker party?" To which he added matter of factly, "Yeah, haven't you ever seen those pictures. Dogs love to play poker." She was still chuckling when she called me.

          

   I had forgotten to put the information on the Events page about the tickets for the Valley CAts baseball game. Oops, you guys should be used to me leaving important pieces of information off the site accidentally. Tickets are only $5 and I think they have fireworks on Friday nights. All of the seats are in the same section and we are pretty sure that the kids will be there to throw out the first pitch.

 

7/21/2008

  Ben went to the clinic today. When he arrived they had a Pinata and presents for both he and James. They also had a cake that one of the nurses, becky, made for him. It was shaped like a stack of 3 Legos. I took a picture of what was left when I got home. It was completely unexpected and shows the dedication of the staff at the Children's Hospital at AMC to the children who are their patients - their children.

      

  At the clinic Ben and the rest of us received a most wonderful Birthday present. Dr Pearce delivered the news that the metastatic tumors in Ben's lung were indeed smaller. The larger tumors were half the size and the smaller tumors were no longer visible. Once again, the measurable tumors are now half the size that they were before and the tumors that were small before are no longer visible in the CT scans. I have a great deal more to say about fundraisers and fun, but, I want to celabrate this news with it's own post.

The larger tumors are half the size they were and the smaller tumors are not visible on the latest CT scans.

7/19/2008

Ben is getting stronger everyday. He and James have been getting each other to laugh quite a bit today. We took the boys to see "Space Chimps" today. I am not sure if the marinol is making him laugh more easily and deeply or if he is just having a great time as he is starting to feel better. He is in a very different place that he was in last week.

         

  When we arrived home from the movies Aiva had returned with her family from a week long vacation. Ben was disappointed that he didn't get to see her when he came home from San Diego and the hospital, but, glad she was off having fun. He saw their car in the driveway and immediately wanted to go to the house and say hi. When she and the boys saw each other they were very happy.

    

  Yesterday a group of 6 counselors from Double H came to see Ben and James. They had a great time. If Ben couldn't make it to the camp they decided to bring the camp to him. It was absolutely magical to see them focus on the boys. Ben was definitely the cener of attention, but, they kept James an integral part of the visit. They brought arts and crafts projects and worked on them with the boys. After they finished the projects an impromptue body painting session took place. Ben also took the opportunity to present them with Green Drakkoman pins. Before they left the held a bear hug sessions and gave the boys each a bear that they had filled with love and hugs. I am creating a new album on picasaweb with the pictures - http://picasaweb.google.com/greendrakkoman/HHStaffVisit  I am also uploading the pictures from the med flight to the MakeAWish Trip album. My goal tomorrow is to start writing and uploading more of our adventures that didn't make it to the sites yet.

         

  The big event tomorrow is to go to the Price Chopper on Rt 9 in Latham for a Ben and the Green Drakkoman fundraising event. Ben wants to go for as much of it as he can. It starts at Noon and goes until 4 pm. They will be having Balloons, Bracelets, Pins. They are also having an Ice Cream Sundae making contest and will be selling green items. It really sounds like it is going to be fun. We look forward to seeing many of you tomorrow. We will be heading over right after church.

7/18/2008

  As I am writing this it is 7:18 on 7/18. I just thought that was kind of cool. Ben is doing really well. He had a CT scan this morning of everything from head to hips. He is still having some issues with eating and his Gastrointestinal track. His tummy is distended, but, it has gone down some. The doctors asked him if he was in pain. His bowls are really bloated. He is well hydrated and his blood counts are good. His potassium is a low and his blood pressure is high. We have him on potassium tablets and he is starting on a blood pressure medicine. He is also still on 2 antibiotics to treat the bacterial stuff happening in his gut and make sure his sinusses stay ok. His strength is coming back slowly and we are pushing him to walk and in his wheelchair. I actually sat in the chair today at the hospital and made him push me 20 feet. It was good exercise for him.

7/15/2008

   I have the ability to make updates on this site again. I am listing another site to use as a back up - http://greendrakkoman.wordpress.com I am going to start putting updates both here and there. In case anything happens again.

        

  Ben is doing well. He is still weak and his potassium and albumenim are low. We have to get him to eat more protein. He is walking some, but, tires quickly so we have a wheelchair for him. He will be having CT scans of his innards done on Friday. It is great to be home and I know many of you really felt cutoff because of the web site outage. It is surprising how much we come to depend on todays communication methods. As soon as his strength is back he will be getting another round of chemotherapy - the ifosfomide. Ben had to have his port accessed today so they could draw blood. He was very upset and cried a little. Then he looked up and said, "I'm ok, I was just a little terrorized because I thought I wasn't going to have to be accessed.

     

   This weekend the Price Chopper in Latham on Rt 9 is having a Green Drakkoman Celebration. I will give you all more details tomorrow. I think the times are from 1-4pm and they will be selling Green Drakkoman bracelets, ice cream and there will be specials on green items in the store.

      

   Ben and James are counting down to their birthday. I am not sure what they are expecting because we really haven't planned much. We have a few ideas that we are hoping to finalize this weekend.

7/9/2008

  It is still 7/8 on the west coast, but, I know to most of you time zones are relative. I don't have any news on Ben's counts. He is still spiking fevers and today he vomited and there was some blood in his vomit. He is also not really peeing like he should be. They gave him medicine for both of these issues. Everything else is status quo.

         

   Now for the good news. This morning, 7/9/2008, at 11:30 Pacific the ambulance will be picking him up and brining him to the plan. The ambulance team will review the discharge plan and do an assessment of him and then they are off to the airport. He will be placed on board the plane for a 4 hour and 45 minute flight to Albany Airport. Once on the ground he will be transfered to an ambulance and the team will bring him to Albany Medical Center. The hospitals on both sides have been made aware of the plan. The Medical Team will ride with him the whole way - from bed to bed. Based on my calculations an estimations the plane should be taking off sometime around noon in San Diego and arriving in Albany between 7:30 and 8 pm. He will probably not be going through the terminal. Instead he will be going through the Million Air building or the other private aircraft building. I will try to get more information about the flight. I am sure he and Stacey will be pretty exhausted when they arrive. I have talked with Dr Pearce and she will be making sure Ben has a bed. Dr Porter is on the floor this week so they may see her when they arrive. Ben is coming home, or at least to Albany Med - close enough.

     

  I am not sure when James and I will be getting home. We already have a flight booked that gets us home late Friday night.

     

   Everyone here as been amazing. They have tried to make us all as comfortable and welcome as possible. You will be hearing more about our experiences over the next few days after Ben is home.

7/8/2008

  Ben's counts are improving day by day. His platelet count is 51 - no problem flying now. His white count is .7 and his ANC is 350. That is a major improvement. We are still concerned about the effects of being Neutropenic for almost 10 days. I can't belive we have been here this long. I'm glad his wish didn't involve a 3 hour tour.

   

   We are working with the travel insurance company that Make-A-Wish uses to get Ben back. We have had an incredible amount of support from you guys back home. I am in awe of the love and dedication you all have. Ben will either be flying back today or tomorrow on a medical flight. Stacey will be flying with him. James and I will follow as soon as we can. Worst case will be on Friday for Jame and I. Ben will be taken to Montgomery Field; about 5 minutes from the hospital. They will fly to Albany and once there he will be transported by ambulance to Albany Medical Center. During the trip he will be connected to IV fluids and meds. The plans are still being put together.

   

  I will be putting the flight information on this site as soon as I have it.

7/7/2008 Part 2

  We have just spoken with the infectious disease doctors. They are happy that his counts are coming back up. He just received another platelet transfusion. The doctors on both sides of the country seem to agree that there is a medical necessity for Ben to both get back to Albany and to do it on some type of non-commercial aircraft. If we can get the insurance stuff worked out and it is a med flight they would feel comfortable releasing him tomorrow as long as he goes straight to Children's Hospital at Albany Med. All we are really waiting on is the insurance companies to talk enough with the doctors to agree to pay for it. As soon as we have any news it will be on here.

    

  Ben just got a fever of 103. Come on baby do you do more than dance? He's hot blooded.

7/7/2008

  First, I will give you all the particulars about Ben. His platelet count has dropped again to 11. As you know the danger line for most people is around 20. His white blood cell count is creaping up to .5 today. The most important number for Ben right now is his Average Neutraphil Count or ANC. Today Ben's ANC is 150. That is an incredible improvement from 36. He is also more talkative today and his personality is present. The infectious disease doctor came in today and they think the fevers are being caused by an endovirus. The only thing we can do with that is to support him with fluids and tylenol. He is still on contact precautions because of the C. Diff bacteria. He is also fighting neutropenic colitis.

      

   As you all know we are trying really hard to get Ben home. The holiday weekend negatively impacted the ability to reach many of the organizations that could help us get him home. Our health insurance company called us today and Stacey spoke with them. They may be able to help, but, the transport needs to be "Medically necessary." Make-A-Wish of Northeastern NY has contacted the National Make-A-Wish offices and they have opened a case with their insurance company to see if Ben meets the qualifications for them to cover the flight. We don't want Make-A-Wish to pay for the flights directly. We don't want Ben's trip home to take away another child's wish. Make-A-Wish and the Make-A-Wish volunteers have been absolutely amazing during this time. We will be talking to the medical professionals involved in Ben's case to try and get a better handle on the insurance company's definitions of need. Even when Ben is discharged we have some concerns about his ability to travel and the risk of exposure to the travelling masses in a commercial airport and airplane. We thank you all for the massive legwork you have all been doing. It is my understanding that couple of the organizations that provide medflight or mercy flight type services have received multiple calls about Ben. We have been quoted prices ranging from $30,000-80,000.

        

  We have also received an offering from medical proffessionals to come out and fly back with us whichever way we end up returning. We have a pediatrician and an oncology nurse waiting for us to call them. What an amazing group of people you all are. We have been contacted by members of the media as well.

       

  The next 24 hours are going to be very important for Benjamin and our trip back. We are watching him closely and will be discussing our current situation with all of the medical professionals involved in his care.

7/6/2008

   Yesterday an amazing group of women showed up to visit Ben. Most of the San Siego Sea Lions Soccer Team came to visit Ben. Stacey said they filled his room and he loved it. They brought goodie bags for both Ben and James. The highlight of the gifts was a game ball signed by the entire team. They are part of the Women's Premier Soccer League. They invited him to any of their games when we come back. We have promised Ben and James that we will make a return trip. They also gave the boys Team Jerseys. They talked with Ben about soccer. Too bad Ben is only seven...if he was seventeen he would have appreciated the visit even more. I said something to him about all the beautiful women coming to visit him and he said,"Oh yuck, they were just cool." When ever there is ever there is a kissing scene on TV Ben will shout, "Oh my eyes! It burns." It is so great to see him react the way he should. Ben and James continually remind how great it is to be a kid.

               

   By the way we have a local WPSL Team - the Adirondack Lynx and they are playing at Siena College on July 12 at 6pm. I don't know if any of us will be able to make the game, but, it sure would be nice. I have a feeling that someone with a connection to them helped arrange the San Diego Team to visit Ben.

         

   Ben's platelet count is 20 today and his white count is up to .3. His Neutrophil count is up to 36. That is a great improvement. Even though his platelet count dropped some it didn't drop as low as it had before. The neutrophil count should be at 1000. His immune system seems to be coming back. Thank you for you thoughts and prayers. The doctors told Stacey yesterday that he wouldn't be able to be discharged until Wednesday. She is talking with him today to see if that is a realistic estimate or not. We are also trying to see what we need to do so he can be ready to fly. We have been talking with doctors back home and my cousin Sherry who is a pediatrician to see what the best way and time to get him home will be. He is most likely going to be admitted to Albany Medical Center as soon as we arrive home. I will be talking with Dr Pearce tomorrow and also with the folks at Make-A-Wish.

          

   James and I had a lazy morning and then spent the afternoon at the Midway Museum. James absolutely loved it. The aircraft carrier is very interactive and James enjoyed checking everything out. I posted quite a few pictures of the tour on the Picasa site.

7/5/2008

  It was a long night for Stacey and Ben. They put Ben on Lasics because he is retaining fluids. They also test him for a bacteria called C. Diff or Clostridium difficile. It can exist naturally in the body, but, when a persons immune system is weakened it can grow rapidly and create a problem. It has been growing in Ben. He also has what is called neutropenic colitis. It is usually extremely painful and the doctors are surprised that he isn't screaming in pain based on the CT scans. He is now put on contact precautions so no one can touch Ben without a complete gown, mask and gloves.

       

  On the positive side his counts seem to be rallying. His latest platelet count is 36 and his Neutrophil count if 14. Both are good signs that his immune system is starting to come back. Between his counts coming back and the cocktail of drugs he is receiving his body should be able to beat back the bacterial growth. Boy, the body is an incredibly complex piece of machinery that in good health is held in a complex balance.

         

   I will be getting pictures up online as soon as I can tonight, but, something really wonderful happened yesterday. Benjamin has been getting down and really lissing home. We have been reading him your posts and Cousin Betty has been visiting daily. These 2 things coupled with James' antics have been the things really keeping him going. If this was planned I think he would have handled it better. Being a surprise I have seen him go to what appeared to me to be the brink of giving up. We held him there and pulled him back with your help. Yesterday 4 firemen from the San Diego FD came to visit Ben. They had given us a number to call for Captain Strick. I called him because Ben said he was in the mood for visitors. I spoke with Captain Strick and he said, "We'll be over in about 5 minutes. We'll be the guys in the big red vehicle. Can you meet us out front and escort us to the room?" I said yes and went to the front door. In a very short time Ladder Truck 28 showed up. The ladder is a 140' ladder. At first we went in and they talked to Ben about all kinds of things. The driver excused himself and went to move the truck as close as possible to Ben's room. We all brought Ben out the nearest exit to be next to the truck. In the process setting of an alarm on the door. Firefighters are used to opening doors and then looking for alarms. They gave Ben a demonstration of the ladder - extending it, turning it, raising and lowering it. Then they brought the business end of the ladder over to his wheelchair and demonstrated how versatile the huge nozzle was and put it through its' paces. Ben was enthralled. At one point one of the firefighters asked Ben if he new the difference between a truck and an engine or pumper. Ben looked at him like he was joking and said, "The truck doesn't have any water." The firefighter replied, "Excellent, you ARE a fireman."

         

  Ben was thrilled. They preseneted Ben with A San Diego FD shirt and apologized for not having his name embroidered on it. They told him when he was in San Diego he needed to wear that shirt and not the one he had on from the Latham FD. It became a running gag argument between Ben and one of the firefighters during the visit. They also presented him with a San Diego firefighters helmet and invited him to come visit them anytime. They reiterated to us that if there is anything they can do for us they will do it. They told Ben, "Firefighters stick together and never give up."

7/4/2008

    Happy 4th of July!! We hope this update finds you in a place where you can celebrate with fireworks and fun. We live in a great country. As Ben's grandfather, Big Poppa, used to say, "Only in America do we have the opportunites that we have."

           

   We have great news to report. The ifosfomide is working. The x-rays taken yesterday show that from when Ben was first admitted to Rady Children's Hospital the tumors in his lungs are shrinking in size. They are still there, but, they are smaller. The ifosfomide is working. His chemotherapy is doing exactly what we had hoped it would do. It is more devastating for the rest of his body than we had thought, but, it is doing what needs to be done as well.

        

  I am taking this opportunity to wish you all well. You have only to look into a mirror to see an angel walking on earth. We ask that today you watch the fireworks through the eyes of a child. Pass over a steak and eat a hot dog or hamburger with the vigor of your son or daughter. Take the opportunity to play a game of wiffle ball with the entire familly. Fear not playing the fool and making a child laugh.

          

7/3/2008 Part 2 

   I am writing this on 7/3 knowing that most of you are in bed and will be reading this on July 4th. I wish I could say that we would be on board a plane and heading home, but, I cannot. I wish I could say that Ben's counts are back up, but, they aren't. What I can tell you is that today we are all homesick. We are in a place close to paradise, yet, we miss our home, our beds, our dog, our neighbors, friends and community. One of the things we miss the most is our doctors and nurses. On our way back to the hotel room from the hospital tonight James turned to me and said, "Daddy, I want to go home. I really miss it." I told him I missed home too and that one of our friends has offered to fly out here on the next plane available and take him home. I asked him if that was what he wanted to do. He replied, "I don't want to leave here until we are all going home together." I told him that I respected his choice and that it made me happy and proud of him. James spent the morning with the young women of Camp Hyatt. The Camp takes place on a section of the pool deck. I will take some pictures and post them. James has made friends with the staff that works on the deck. When I picked him up today he said bye to at least 6 people. I was amazed when they all replied back to him by name and wished him well. It was like watching an episode of the "Suite Life of Zach and Cody." We had a great time at the San Diego Museum of Man and the San Diego Automotive Museum. They are both in Balboa Park. James enjoyed the Mummies and motors. He wasn't impressed when we walked through a garden to get to and from the Museum of Man.

            

  A few of you are working very hard to get us home. We are concerned about putting Ben on a commercial flight, but, we will do what is necessary. The doctors are hoping that we can get him out on Sunday and then bring him home. He spiked a fever of 102.5 today and the doctors here in San Diego have brought in an infectious disease specialist. She consulted with us tonight.They are still not seeing anything when they cultured his blood. They decided to have CT scans of his sinuses and chest to see waht was going on and making sure he doesn't have either bacterial or fungal infections in them. I was there for the CT scan. They had a difficult time finding a vein to put in the contrast. The first nurse tried and blew a vein in his left arm at the elbow jopint. They sent for an IV specialist. I said to Ben, "They have gone to find the very best person in the hospital to do it. Like they did when we were at Ellis hospital." He fired back in a tearful voice, "Why didn't they send that person to begin with. I wanted them then." I could do nothing, but, agree with him. Soon 2 medflight nurses showed up and they worked away on him. It took 2 tries, but, they got the PIC line in. Ben was taken down to get his CT scan and the sinus scan went well. They started the chest scans and did the first couple without contrast. When they started the scans with the contrast the nurse who was present stopped them almost immediately. The contrast is injected automatically while the machine idles. It was at that point when she called for the injection to stop and hit the HALT button. The contrast either blew his vein or the PIC line pulled itself out. Ben has a painful bump of fluid and swelling where the line was. As she removed the PIC line Benjamin was in tears and in a moaning voice exclaimed, "This hospital is cursed. I want my hospital." I kind of felt sorry for the poor nurse. They are going to try and complete the CT scans tomorrow.

        

   The journey home through commercial airlines is going to take close to 12 hours because there are no direct flights from San Diego to Albany. His immune system will be really vulnerable so we will have to keep him as isolated as possible. We have at least 3 groups doing everything they can to find us an alternative to commercial flights. If there is any possibility I am sure these determined individuals will find a way to make it happen. Either way we will be bringing him home as soon as possible. Dr Pearce has told us that Albany Med will be ready to admit him immediately on our arrival in Albany. Stacey and I have also talked about the possibility of hiring a nurse to travel with us. The Ben fund certainly has enough money in it to cover this aspect of the journey home. A nurse travelling with us would make all of us feel better.

       

  One final piece of news for today. When we first arrived they took x-rays of Ben's lungs. The latest x-rays show that the tumors that were throughout his lungs appear smaller. The ifosfomide is working. We have a really big positive to focus on. The ifosfimide is working.

7/3/2008 Quick Update

   I just finished a phone call with Stacey. Ben's Platelet count has dropped to 15. His Neutrophils (type of white blood cell) are .2 - that is very very low. Focusing on the positive his red blood counts are fine.

7/3/2008 Part 1

   James and I returned from the hospital late last night. It was 1:30 in the morning eastern time. Ben is losing his hair. This morning Stacey told me he had a hair pillow. He received platelets and more blood yesterday. Last night his nurse told me his latest platelet count was 35. It looks like his marrow may be producing again. We will see what his counts are this morning. Hopefully he will be maintaining or improving the he counts. The platelet count is the big one that was preventing flying. Spontaneous bleeding at 30,000 ft is not a good thing. Now the two things that are keeping him in the hospital are his weakened immune system and weakness. I managed to get him to crack up a few times yesterday. It was magical music to hear him laugh. I asked him to do something and he gave me one of his looks. I cracked him up by telling what his 1 second look communicated. "Yeah, right. You really expect me to do that. Are you looking at me? Do you see where I am and what I am doing? You have got to be kidding. I wouldn't eat that if you covered it with ketchup, chocolate, peanut butter or Fluff brand marshmallow spread on my best days. You are absolutely nuts if that is what you are thinking. In fact it makes me mad that you would even think I would do that. This is me...this is Benjamin...your son... Why not ask me to eat a booger?..." You get the picture he was laughing by the time I was done; two minutes later he was asleep. He fell asleep and woke up several times while I was there. I stayted longer so Stacey could get a break and leave the hospital with James for a little while. They took the laundry that we had at the hospital to the Ronald McDonald house across the street and stayed for dinner. They also had a tour of the facility. As you can imagine the staff at RMH was wonderful. The doctors are still talking about getting Ben out of the hospital on Sunday. He ate a french toast stick yesterday and some popsicles and other things. He is keeping food down now. It is just a question of getting it into him. We are trying to get him a day chair so we can transition him into walking around.

         

  We are doing fine financially out here. Stacey has been paying bills online and making sure that the money is where it needs to go. We have had some unexpected expenses, but, everything is ok. Direct deposit is a beautiful thing; as are ATMs and credit cards. We also have access to the Ben Fund if we need it.

         

  It is foggy out this morning. I am about to take James to the morning session of Camp Hyatt. I will update more later on today.

7/1/2008 Part 2

   Ben spiked a fever today of 103.2 degrees. Stacey spoke with Dr Chang and asked him to consult with Dr Pearce. Ben received platelets today. His platelet count hit 7 today - normal is above 150. When the platelet count gets below 20 spontaneous bleeding can occur. Ben also received red blood cells as well. His hemoglobin count also hit close to 7 and should be twice that. Even though the fever was high and the counts low Stacey said Ben was looking good and acting normal, but, tired. He is talkative and has gotten out of bed a couple of times. He has eaten crackers and is drinking root beer and other liquids. He was moved to room 115. The room he was in was an isolation room and he doesn't need the level of isolation that room could provide. I guess a bone marrow transplant patient was going in there. The story now is that they don't anticipate discharging him until Sunday. I have to find a laundromat. We are all just about out of clothes. I contacted Make A Wish and told them the news.

         

   James and I went to the New Children's Art Museum in San Diego. It was quite the adventure. James has wanted to ride a pedicab since we arrived. It was supposed to be a short way away so I agreed. The driver had no idea where we were going and took us farther away than he should have. When the police officer yelled at him for taking up 2 lanes of traffic it was time for us to bail. I had the guy pull over at the nearest corner and paid him. Then James and I tried to find the museum. Apparently, it is so new nobody knows where it is. Finally a tourist with a map (I didn't think I needed one) pointed us in the right direction after 2 locals sent us in the wrong direction and one got us close. James had a great time and I will be posting pictures tonight when we get to the hospital. Tahnk you again for your support and love.

7/1/2008 Part 1

  I just realized last night that today was going to be July 1st. James and I were on the pool deck overlooking the San Diego Bay when a couple mentioned watching the fireworks on the 4th. They had arrived from Vancouver, BC in Canada yesterday. They are planning on watching the fireworks from the pool deck. I hope Ben doesn't spike a fever today. I'd really like to be home for the fireworks in Albany. Last year we watched them from the 7th floor of AMC. Ben was sleeping when we saw him and once again James gave him a sweet kiss on the cheek. He morale could be better. The San Diego Children's hospital does not have as robust a child life component as the one in Albany. I knew the activities at 2:30 in the activity room in Albany were an important motivator for Ben. We now know just how much a motivator they were. If there was ever a case study needed to justify its' existance Ben is it. We have to get him home. Anybody have a jet?

          

  I am telecommuting to work from 6 am to noon San Diego time. It works out well for James. Yesterday we had a lazy day of kite flying and walking around the Seaport Villages shops. We came all the way to San Diego to have Ben & Jerry's ice cream every day. I will be getting up the pictures of James and the big kites when I go to the hospital today. Stacey has our laptop. I can only update text with my work laptop. James had a great time with the master kite flyer. The winds were really strong so I actually had to hold his shoulders to steady him when he tried to fly the stunt kite. He did a great job considering the kite was trying to lift him off the ground. I didn't get any pictures with the stunt kite because I couldn't hold on to him and take pictures at the same time.

         

   Today we are going to the Airospace Museum and the Model Train Museum in Balboa park. He has had enough waiting for me so we are off.

6/30/2008

   I messed up the dates on the updates a little. Between the time zone differences and everything else I guess it isn't too surprising. The Panckae breakfast on Sunday morning was amazing. We heard the offical turn out was at least 300 people. The manager of Applebee's said that the folks brought his restaurant "to Life" like he had never seen it before. Jamie Harrigan and the NCYBA team who put this on are angels. Our angels in the outfield. I really don't have the words to describe my feelings...most of you know I am rarely short of words. Between the breakfast, the chinese auction and the Yankees tickets raffle they raised a little over $11,000. They also expressed great concern about us being out here in San Diego. Bank of America was exceedingly generous in donating the Yankees seats and they have reached out to us to see if there are other ways they can help.

        

  Ben spiked another fever today. His highest temp today was  101.5 so the fevers are staying lower. We won't be able to bring him home until he goes 48 hours without a fever. Our plane flight has been pushed back to Thursday. There are only 2 flights out of here to get us home as quickly as possible. The flight we prefer leaves at 12:58 pm local time and gets us home at 11:05 pm albany time.

6/29/2008

  Ben had a fever of 103 today and it broke about 30 minutes after James and I arrived at the hospital this afternoon. Ben woke up crying, "I'm sweating, I'm sweating...all over...mommy make it stop." Then he saw James and I and calmed down as we took his temperature and told him the sweating was a good sign. Indeed his fever had broken and he stopped sweating soon after it broke. When we arrived at the hospital there was a box of baseball cards on the check in desk with a sign on them that said, "Free, take some." James was excited as he looked through the cards for Red Sox players to give to Ben. He also found a couple Yankees cards for himself. He was great he asked the woman behind the desk if he could take the ones for him. She told him it was ok. James insisted on waiting until Ben woke up so he could give the cards to him himself. When we walked into the room it was dark and Ben was asleep. James tried to kiss him, but, he couldn't get past the bed rails. I lowered one of them and he very gently gave Ben a kiss on the forehead. It was a very tender moment that of course we did not have the camera ready for.

             

   You may recall the story I posted on the site about the 2nd grade trip to the Herkimer Diamond Mine that Ben had found the largest stone that could be cut and set. I am not sure who is responsible for it, but, Mrs Bassett gave me a necklace that the stone had been set into. At least the 2nd grade teachers were involved. James had commented that he liked a necklace that one of the teachers had on one day. They used his comment as the inspiration for the necklace. The stone is at least 3/4 of a carat and is beautiful. I was supposed to wait until a good moment on the trip to give it to Stacey. We gave it to her in Ben's room. She started to cry and I was afraid the boys were going to be upset so I pointed out they were tears of joy.

    

   James and I had a great time flying kites today. His love for kite flying is obvious. There was a master kite flyer there today and James asked him questions about his kites. The gentleman took me aside and suggested I stop by after 12 tomorrow with James and he would "put a high tech stunt kite into his hands." I haven't told James. I thought it would be a great surprise.

              

   On the home page of this site there is a link to a site called Buddy Mapping. In a move inspired by Mrs Bassett Ben is trying to get all 50 states represented. You can put your location on the map.

6/29/2008

  I really don't have much to update. That usually means I am about to write a small novel wo we will see where this takes us. Ben is still in the hospital. He has received red blood cells and platelets. His color is better and his blood counts have stabilized although they are still very low. He is still spiking fevers of 102. Usually the doctors don't like to release their patients until it has been 48 hours after the last fever.

     

    When we told him that we were taking him to the hospital he was very scared. He was concerned because he didn't know any of the nurses or doctors; he was especially worried about the nurses. He was also disappointed because he wouldn't have any visitors. I pointed out that he would have James and Daddy. Apparently, as he explained to us, we don't count as visitors. When James and I went to the Hem -Onc floor for the first time after Ben's admission I jokingly said to Ben, "Hey, the nurses here are cuter than the ones back home." He replied, "No they aren't, all my nurses are beautiful."

        

    Yesterday he was surprised when James from Make-A-Wish came to visit him. James brought acrylis paints, paper and brushes for him. The paints were from his own collection. As most of you know Stacey and I made our living for some time as artists. It is a nice gesture to buy bring the art supplies, but, to give your own brushes to another person is a great honor. James, like the other Make-A-Wish volunteers are angels. Make-A-Wish has told us they will take care of whatever we need. Our hotel stay has been extended and the flights are being moved. Yesterday Ben had another big surprise visitor. When participated in the ACS Relay for Life at Siena he met a college student there named Brendan who had had osteosarcoma in his right leg. They walked the first lap together. Well brendan is from Orange County, CA and he flew out here yesterday to spend time at home this summer. He arrived at the airport near his parents around 1 pm and then went home for a little and drove with his mom 1 1/2 hours to come and see Ben. Dena and Brendan are truly special people. We are continually amazed with the individuals we have in our lives and who have come into our lives. I just spoke with Stacey and she told me that another surprise visitor has stopped in at the hospital to see Ben. Her cousin Betty happens to live in San Diego. I think I have only met cousin Betty once, but, blood is blood and they are having a great visit.

      

  We have other angels too. VIP services at the Hyatt has been sending us treats every day. They just delivered 2 plates of cookies and milk. They also brought in 2 plates of truffles. I will be sharing the truffles with Stacey and bringing half the cookies to the hospital.

         

  It just happened that the San Diego Triathlon's finish line was today and the finish line was in the park behind the hotel. James and I went to fly a nylon glider plane I bought him yesterday and we watched the folks finish. James had a great time because they had 2 huge bouncey-bounces there to entertain the children. He bounced on them for quite a while. We also had ice cream and he let the parrots guy put a parrot on his arm again. He loved it until the parrot decided to "kiss" his ear and nibble on his hair. We have been inside for a while today. Daddy forgot the sunscreen yesterday so both of us have a sun burn. Being bald I received the worst of it. His cheeks are extra rosy. I've been putting cream on the burned areas and we are remembering to use the sunscreen now. We are about to go out and fly kites again - this time with hats and sunscreen. Mrs. Trawinski gave James a kite when she found out that was the one thing he really wanted to do out here. He has flown the lizard kite and we will fly it agin today. He informed me last night that the kite is "very special to him" and that he will "love it and honor it always." We have been talking about things we love and cherish at home and how they should be put in places of honor not put away in boxes or closets. It is always surprising what words stick in our children's minds.

          

   Ben has asked me a couple of times to run a marathon just for him. He asked me to win one, but, I pointed out that that wasn't going to happen unless I was the only participant. He suggested I create a 5 day, never stop running event. That way nobody else would enter. I told him, "Yeah, not even me. I can't run for 5 days." He responded, "I know you wouldn't have to run for 5 days only everbody else." I decided today as I was watching the people finish that I am going to sign up for the Hudson Mohawk Marathon in the Albany area in the fall. I will create a shirt and medal for the Green Drakkoman Marathon and I will win his marathon because I will be the only entrant.

         

   We heard from my sister and Kathy Crudo today that the pancake breakfast that NCYBA put togather was pretty amazing. They both said it was overwhelming and Janine even cried a little. I am almost glad I wasn't there because I would have been a basket case. She also told me that there was a concern amongst the volunteers that because of the extended stay we would run out of cash out here. I still have a $20 in my pocket and we have been able to do some banking online. We are fine we only have to pay a little extra for ATM usage. I will have more on the web site later about the details of the pancake breakfast when I get them. If you were there I thank you and please make sure to thank those businesses that supported the raffle.

        

  Oh well we continue with status quo. I will update the photos tonight at some point so check the Make A Wish album - http://picasaweb.google.com/greendrakkoman/BenSMakeAWishTrip 

           

  Please take the time to sign the guestbook or send a message. We are reading all of the messages to Ben and it gives him strength. Oh well, James and I are off to fly kites again.

6/28/2008

  Stacey met with the doctor this morning and he said he didn't think Ben would be ready to travel unti Wednesday. A great deal deends on how quick he bounces back. He has received a red blood cells and is receiveing platelets. His platelet count was 22. The goal is to get him up to a level where he can safely travel. He isn't showing any signs of infection. He is still spiking fevers. The hospital staff has been wonderful. They are aware that this is Ben's Make-A-Wish trip. I contacted Make-A-Wish and they have said that they will work with the hotel and airlines to extend our stay. I haven't contacted work yet, but, I can telecommute if I have to. I do know that my boss and coworkers do check the site. As always I will keep you posted of any changes. I am so glad that we got LegoLand in when we did.

             

  Bill, Michael and everyone else at Lego was wonderful. If you look at the photo album  -http://picasaweb.google.com/greendrakkoman/BenSMakeAWishTrip - you will see some of the adventure. Ben and James sat and worked with Bill to create 2 small models of themselves. The big hit was the 6" model of the Green Drakkoman that Bill and Roger (another Lego Master) created just for Ben. It was a big hit. Ben was blown away. The boys each got to keep one of the models of themselves. The other models were put into the Miniland USA. Ben immediately chose Washington DC and asked to put near his favorite President - Abraham Lincoln. Bill walked with Ben and they placed Ben on the steps of the Lincoln Memorial. It will be there forever. James took longer to decide where he wanted to put it. He and Bill looked like a disaster movie as they walked through Vegas looking for the perfect place. James accidentally knocked over a couple of people that Bill repaired immediately. Finally, James settled on having his mini self portrait on the deck of one of the Pirate ships in front of Treasure Island. It was really cool to see the boys get such a coll opportunity. Boys self portraits will be in Miniland USA forever. As long as it exists they will part of it. Ben will always be on the steps of the Lincoln Memorial James on the deck of a pirate ship.

6/28/2008

   It is very late and just a little bit into June 28th on the east coast. James is sleeping soundly on one of the beds. Stacey and Ben are at the emergency room at The San Diego Children's Hospital. After we met with the Lego master model builders he started to fade fast. We stayed for one show in which James was a puppeteer and then we headed back to the hotel. Once at the hotel it was tough going for Ben. He ended up spiking a fever of 102 so we called the doctors at AMC. They suggested we head to the emergency room.

        

  It took a while, but, Ben finally had a room in the emergency room and they were drawing blood when James and I left. We will keep you all posted. Ben was very afraid of going to the hospital. Nurses and doctors he doesn't know seem to scare him. I totally understand his feelings. New places are scary.

         

   Legoland was great and we will talk more about it tomorrow. As you can imagine everyone is exhausted. As James told his aunt Janine, "Half the day was great, half the day wasn't so great."

6/27/2008

  Today we are heading to LegoLand. It is early morning here and we are excited. Yesterday was a real rollercoaster day. Ben has spiked a couple mild fevers and started him on the Anti-biotic AMC sent us with. I just checked his temperature and it is normal. We are sill srtuggling to get food into him. He ate scrambled eggs in the morning and it picked him, but, by afternoon he was really tired. His fluid levels are fine - pee clear. He has committed to us that he will eat whatever we give him today.

            

   Yesterday Ben and Stacey ate breakfast in the room. We then went on a ride to Coronado Island and stopped at Imperial Beach. We went for a walk on the pier. James and Stacey went down to the water and splashed in the edges. They got their feet wet while Ben and I stayed dry on the pier. I have some pics and video that I will be trying to get uploaded at some point. We explored Coronada by car and drove through many neighborhoods. The nice thing about having a GPS device in the car is you can pick a direction and drive and then hit a button to get you directions back to the hotel. The bad thing is when you get close to your hotel it might tell you to turn left so you can enter the parking lot across the street. You have to pay attnetion or you wil be in the wrong lane and have to drive around the block. The boys got a big kick out of the Darth Vader voice I downladed giving us directions. When getting on the freeway it said, "Prepare to merge into traffic and enter hyperspeed." As we arrived at our destinations it said, "You have completed your journey to the dark side."

         

  When we arrived back at the hotel we found some treats - Deluxe Gourmet S,mores kits, San Diego kids playtime backpacks and a nice bottle of wine for mommy and daddy. It was from the VIP manager at the hotel and they have firepits for the S'mores on the pool deck at sunset. Ben wasn't up to it so James and I went. We met a nice family. James is amazing at making friends at the pool. On wednesday he managed to get every kid in the pool into a Marco Polo game and last night he had the kids laughing and goofing around in and out of the pool. When we came back to the room he informed his mom, "I have already made 4 friends on this trip." Watching the kids you interact you would think they knew each other for most of their lives. Best friends for a few minutes. I watched as they found out what they had in common and then just dove in to being friends. We are not sure how the treats were arranged, but, we think an angel named Jim had something to do with them. Thank you Jim and we are looking forward to making S'mores with Ben as he says, "When I get my sweet tooth back."

          

   We went for a walk through the Seaside Villages shops and bought the boys San Diego - I will finish this later we are off to breakfast and Legoland.

6/26/2008

   As you can imagine yesterday was rather exhausting for everyone. We left the house at 4:15 Eastern time and actually arrived at the hotel at 4:30 Eastern time. It took us 12 hours to get here. Ben got sick on both flights. On the first flight (to Detroit) we didn't have anyone next to us. He made it to the end and then we filled up a bag just after touchdown. We had made arrangements for wheelchairs throughout the journey so it preserved his energy. That was a great idea. We were in Detroit for a little over 2 hours. Then the next flight to San Diego. We sat next to this really nice man. He has a granddaughter who is almost the same age as Ben. He had some nice conversations with Ben. When Ben was asleep he asked about Ben's story. I gave him the run down. At one point Ben started to et a little sick again. I was prepared with a plastic bag, but, it was wonderful to see this kind stranger trying to find a barf bag for us. He must be a wondeful grandpa. He aasked me for my card and I gave him one along with a Green Drakkoman button I had on. He wished us well and said he was going to try to contact our hotel because he knew the GM here. He also gave us some advice about San Diego.

       

Here is the link to the photos. I will probably doing most updates through the photo site during the trip.

http://picasaweb.google.com/greendrakkoman/BenSMakeAWishTrip

                        

                 
   It was cloudy this morning, but, it is clearing up. We have had breakfast and are about to head out. We will be staying near the hotel today. We are looking at going to the Midway Aircaraft Carrier Museum, A tall ships maritime type museum, the Seashore village ( a collection of shops and restaurants) and maybe a harbor cruise. We are still increasing Ben's stamina and he ate scrambled eggs this morning and a few bites of pancakes. He is keeping down gatorade and water. James and I went for a swim last night and explored the Seashore Village last night. He is looking forward to showing Ben what we discovered.

6/24/2008

   San Diego here we come...I think. James is thrilled. I just heard him spontaneously say, "I can't wait, I can't wait, I can't wait." to nobody in particular. Ben has told us several times today, "I'm not going to be able to sleep." I am excited as well. Unfortunately, Stacey is battling a sudden sinus headache and nausea. She is resting while I am doing the packing and last minute things that we put off when we weren't sure what was going to happen. A limousine is coming to take us to the airport at 4:15 AM. We take off at 6:11 am and land in Detroit at 7:58 am. We don't leave Detroit until 10:06 and land in San Diego at 11:36 am. The magic of time zones make it look like we will be spending more time on the ground than in the air. Ben is still not eating much, but, he is taking in plenty of fluids. He is doing well. Stacey is resting so we are hoping she will be feeling better. We don't have any where we have to be tomorrow or Thursday. The Legoland part of the trip has been moved to Friday. The only fallout to the trip other than losing a day has been that we are staying at a different hotel. We have been moved to the Manchester Grand Hyatt in Downtown San Diego. It looks great although James is a little disappointed because it doesn't have any water slides. I showed him the pictures on their web site and he was persuaded that it looks wonderful. The Make-A-Wish people have been fantastic. We will be coming home on Monday night. We are supposed to land at 11:05 PM in Albany. We are flying Northwest.

         

  I will be posting a link on here tomorrow to the place I plan on uploading the photos from the trip. I have to go get the boys to bed.

6/23/2008

  We brought Ben home from the hospital around 11:30 this morning. He was discharged around 10, but, it took us a while to find a wheelchair. We didn't get home until almost 12 because we had to pull over twice because Ben was getting sick. There is no way we can put Ben on a plane today. We called Dr Pearce and we called Make-A-Wish. We are still in a place where if we don't make this happen this week we can't guarantee it will ever happen. I hate writing that sentence bacause it sounds so pessimistic. It is not meant to be. It just reflects that we find ourselves in a place that puts the fact that there are no guarantees in life right smack in front of our faces. The Make-A-Wish folks are doing everything they can to make it happen. I guess Lego had a great deal of things planned for tomorrow and it may be difficult to move them to another day. Tentatively we may be flying out on Wednesday morning. Ben is supposed to start back up with treatments next Tuesday so it was suggested that we come back on Monday. Right now he is laying on the couch with a container next to him. Stacey just went to pick up his Zofran prescription. It is an anti nausea drug. Once he has taken that we are planning on pushing some bland foods and liquids into him. Once he starts eating he should bounce back quickly. He really hasn't eaten anything for almost 4 days.

              

  We couldn't pick up James at the bus stop so he went to his friend Cameron's house. When he came home he bounded into the house. He dropped down on his knees next to the couch and said excitedly, "Ben, Ben, Ben do you know what today is? Do you remember where we are going? We're going to San Diego! We're flying on a plane today!" Then he started to realize Ben wasn't very excited. "Ben are you ok?" "He's ok honey, he just doesn't feel real good." The phone rang so I went upstairs to answer it. I was juggling phone calls from friends, my sister, Dr Pearce, Make-A-Wish and my boss. As I was talking on the phone a screaming, crying blurr flew past me and went into the boys bedroom. It threw itself under Ben's bed. I have never seen James move so fast and be upset. Stacey ended up coaxing him out al;though she first had to crawl as far under the bed as she could. Adults don't fit too well. She told me later that through his tears he told her, "I thought I would be on the beach tomorrow morning flying a kite." He had it all planned out. She explained to him that we were still going and that he would still get a chance to fly a kite. He was just going to have to wait a little while. I know how he feels. His world is very confusing.

6/22/2008

   Well we are counting down to the Make A Wish trip. Ben is awake most of the time. He isn't talking much, but, we aren't yelling at him just to get a response. He has been vomiting today. It is midnight and he is wakeful. Today my cousin Esther dropped of a medal she found on the streets of Albany while she was walking with co-workers and telling them about Gen. She had a chain put on it. It is a lovely Madonna medal. We have received a number of medals from people. We have also received some other healing waters and oils. We are very thankful for the faith of the people who are praying for Ben. I have had to explain a couple of times about the folks who are atheists and how they are sending positive thoughts Ben's way. We welcome any support for our family and respect the faiths and beliefs of those we love. Tomorrow at 2 pm the limo to take us to the airport should be arriving at our house. Ben will be completing the ifofsomide around 9 AM. We are hoping that he bounces back quickly. We are ready to call Make A Wish if we have to. We still believe we are on track. Ben really wants to do this, but, his health comes first. We will know around 11 AM for certain. We are packing and preparing with faith.

       

  Today we received an email from the person at NCYBA that is in charge of tickets for the Applebee's Pancake breakfast fundraiser for Ben and The Yankee Field Box tickets that they are raffling off. It seems that the rumors about the tickets being sold out are false. At last count they have only sold 1/2 of the tickets they are hoping to sell. If you are interested in either of these items please call Jamie Harrigan at 518-506-3520. You can also find more information on their web site http://www.ncyba.com - you have to click enter end then there are links on the main page.

         

   I must tell you that North Colonie Youth Baseball is an amazing group. Coaching the kids this year was an amazing experience and helped me a great deal. I was blessed with a great team, great kids parents. I don't think I could have made it through the season without my Book Coach Nick Mitchell and our Team Parent Mary Sweeney. I am very disappointed we won't be making it to the picnic and award ceremony next Saturday. I am sure that everyone understands. We are going to hold a team get together in the next couple of weeks. I have a surprise for the boys.

6/21/2008

  Last night when I arrived at the hospital Ben was pretyy out of it. He had been out of it most of the day. Sleeping almost continually. He wasn't in a coma. He was jsut sleeping very deeply. The residents and doctors would come in every hour or so and we would call his name loudly to get him to open his eyes. He would aknowledge who we were and we would continue to hound him to do something. "Ben, squeeze our hand!""Ben, push against me with your feet!""Benjamin, honey, stick your tongue out!" Eventually we would respond to the commands and then we would let him go back to sleep. We were also tickling him and gently pinching him to see if he would react. The doctors also monitored his reflexes and vital signs. At one point his blood pressure and heart rate dropped to around 50. We were able to get it to go up to 60 just by being annoying so intervention wasn't necessary. As you can imagine with him being out of it I changed the bed a great deal and we have him in diapers. I was hoping the next time Ben had to deal with diapers it would be when he had to change mine someday. A few people came to visit. I was watching while one of them was having a tough time seeing us yell at Ben to get a response. On one hand it is hard to see this through their eyes, but, on  the other hand it makes us realize how hard we are fighting for him and what great support we have. It can be really exhausting, but, the medical staff is there fighting alongside us. I worked with a young resident, Dr Tran, last night who made sure she was checking on him every 1 1/2 hours to make sure he was responsive. We are genuinely pushing this kid to the edge with this drug. Someday we will find a way to fight cancer that doesn't involve poisons. She stood by his bed and just kept pushing him and pushing him. Working with Stacey and/or me to get him to respond and follow a command. Checking and double checking reflexes and vital signs. Apologizing to me on the overnight for waking me. Celebrating with us when he would ultimately respond. It was another long night, but, not a bad night. He stopped receiving the ifosfomide sometime between 3 and 4 am.

         

  I woke up this morning around 7 and looked over at Ben. He was still asleep. I turned on TV and was watching something. I forget what it was, but, it wasn't cartoons. I looked over because I heard him stirring. He stretched a little and looked at me with die open, bright eyes and said, "Where is my remote? I want to watch something else." I didn't care that it was HIS remote. I didn't care there was no please and that it was command more than a question. I immediately changed the channel to one of the carttoon channels and handed it to him. I then went out to the nurses station and told Dr. Tran that Ben had just asked for the TV remote. Her smile was bright and beautiful. As I left to go back to Ben I heard immediately calling the attending as she told the nurses and other resident. Of course I called Stacey and in my best, deadpan voice I asked her to "wait a second" as I handed the phone to Ben. He said, "Good morning Mommy." Then he told her he was watching cartoons. When he handed me the phone back I could hear the emotion in Stacey's voice as she said, "Thank you, you just made my day. That was wonderful."

        

  Day 4 of the ifosfomide was started around 9 am. He has 1 more day left to receive his 5 day course of the drug. I left around 10:20 and he was starting to get sleepy and cranky again. We are prepared for this and it was refreshing to see how quickly he was bouncing back from it. We have been told that the side effects could be owrse than what we are seeing so that is encouraging. We know that the staff cares for Benjamin and watches him like a hawk when they need to.  I will update more later. In the meantime thank you for everything. The Make-A-Wish trip has come together and if the treatment continues as it has we will be able to make it. We are receiving wonderful suggestions about what to do when we are in San Diego. We are also building a Green Drakkoman West team to be there if we need anything for Ben when we are out there. Please don't worry, pray for fun and recharging of our family's strength and togetherness. I have come up with a way to provide a photo/video log of the trip and will be posting a link on here before we leave. I will upload images at night from the hotel. I cannot say enough about Make-A-Wish right now. Up to this point they have been amazing. You will be hearing more about them over the next 2 days and I am sure post trip.

6/19/2008

   Last night was an interesting night. They are giving Ben copius amounts of fluids in conjunction with the chemotherapy he is receiving. He has been peeing very regularly in great amounts. Current events prevent me from making any flood jokes. He has always been a deep sleeper, but, the drugs do make him a little sleepier still. As you can imagine he ended up peeing the bed twice. The first time was my fault. I realized it had been a while since he had urinated so I checked and the bed was dry. I shook him a little and said, "Ben do you have to pee?" He mumbled, "Yes." I made the mistake of saying, "Ok." I immediately saw the wetness spread out from him on the bottom sheet. He let loose before I could suggest he stand and help him get out of bed. I realized that he did exactly what I gave him permission to do.

       

  The 2nd time I missed the time. I got up to check him and get him up, but, he had already wet the bed. I was just a few minutes late. I had him sitting up in on the edge of the pullout sleeper. I washed him down and was stepping over his IV tubing to get the TV remote to hit the Nurse call button. What I didn't realize was my trailing foot had hooked into his tubing. When I started to bring down my foot to get my balance I ended up pulling real hard on his tubing that was connected into the port-o-cath in his chest. It pulled the needle partially out of his chest. I hit the button and tried calming him down. He was hysterical and screaming about how much it hurt. I got him to sit back down and went looking for a nurse to help. I wasn't waiting for them to answer the call. One of the nurses saw me and I told her what had happened. She went to find his nurse. Gillian showed up very quickly with everything she needed to take is and replace it. She disconnected the IV drugs and started working with Ben to de-access him. It took a while because I had only partially yanked off the tape. Ben worked the rest of it off himself. I think it was one of the lowest times for me. I had inflicted great Ben upon this brave boy. I am thankful that it was a port-o-cath and not one of the other types of connections. I know a father who accidentally pulled out his son's Hickman catheter and that requires a surgery to replace.  I had to walk away a couple of times to cry.He and the nurse arrived at a solution. She is going to place twice the amount of tape on my chest and he is going to yank them off of me. I am not really fond of the idea, but, it made him stop crying and I won't be having a needle pulled out and then poke me several times while it tried to re access itself.

        

  Ben's day hasn't been very good. The effects of the drug are kicking in. He isn't having an incredible reaction, but, he is upset and is almost having sleep terrors. He keeps crying at the drop of a hat and saying things like, "Why are you doing this to me?" "Make it stop, make it stop." He has also peed himself a couple of times and then gets really hard on himself, "I'm a loser. I'm a loser." "I can't help it. I can't stop crying." He isn't hallucinating though and they ended up sedating him a little to take the edge off. It is really hard to watch this, but, we know it is the drug and not Benjamin talking. Hopefully he will get some good rest this evening and overnight. I know I'm not sleeping tonight. I will update the site and let you know when he is ready again for visitors. Please know that although this sounds horrible it is actually something we were expecting and somewhat prepared for. Our medical team has been doing a wonderful job of preparing and caring for us. It is only temporary.

   

  On another not so nice note I found out today I have not been working long enough at my new job to qualify for Family Medical Leave under the FMLA. They have been wonderful and are trying to figure out ways to help. It is really tough sometimes to work things out in large companies, but, everyone is being wonderful. I work with amazing people and the management team I work with understand what is going on.

      

  On the wonderful side the folks from Make-A-Wish stopped by with the trip information. We are leaving on Monday night around 7 pm to head for San Diego and Legoland. We will be touching down around 9 pm Pacific Time. We are hoping the boys sleep for most of the trip so they are awake and ready for the big day on Tuesday. I have a camcorder and we are bringing a camera. I'm not promising any updates during the trip, but, I'll try. Even if it is one picture a day. We are coming back the next Saturday. The boys are a little disappointed that we won't be able to make the awards ceremony for the North Colonie Youth Baseball teams that takes place on that day. We don't get back to the airport until around 11 pm.

        

           

6/18/2008

 We are fighting this fight as the Green Drakkoman would. We have gathered our team and Ben is ready. I mete with Dr Pearce today and we have a plan. There may be some adjustments along the way, but, we have outlined our next steps. The first step is to fill our lives over these next few months with as much fun as possible. We will go on Ben's Make-A-Wish trip next week and Ben will be going to Double H Hole in the Woods Camp. Ben has started receiving his first course of High Dose Ifosfomide. He will be getting his first dosage over the course of 18 hours. Normally he would get it over 24, but, he tolerated it well and this will allow us to leave for San Diego on Monday instead of Sunday. We will still be coming home on the following Saturday. So we are only losing 1 day in San Diego. Ben's blood counts will be dropping the whole time we are there so we will have to travel with extra precautions and be watchful of him. I am not looking forward to going through the TSA lines with medicine and syringes. I am sure we are going to have a story to tell.  I met the man who is the head of the Albany TSA at a meeting last year. I am hoping I still have his card.

        

  After we return Ben will get his 2nd round of High Dose Ifosfomide. At that point we will see what has happened with the tumors. Assuming they have responded by shrinking the tumors will be removed. We are looking at alternatives for removal. The most common method is surgical removal. There is also a method called cryoblation that we are investigating. After that we will be pursuing the Mifurmitide (L-MTP-PE) through MD Anderson in Houston. The doctor who is heading the study in Texas has spoken with Dr Pearce and is obviously impressed with her because Albany will be joining in the study so Ben would be able to receive the treatment here. We may go to Houston for a visit or 2, but, the long term treatments would be at the Children's Hospital at Albany Medical Center. Dr Pearce is also speaking with another doctor at Stamford to see what she recommends for Benjamin. We are in touch with the finest minds in the world regarding osteosarcoma. Ben's team is also looking at a drug called Rexin-G that has shown a great deal of promise.

        

  Ben is up for visitors and we are encouraging them. Be aware that he may be tired or sleeping so the visit may be cut short. We are reading the messages in the guestbook to him and he has loved getting visitors who tell him about the fundraisers. It gives him strength knowing that you are out there supporting him. I am in awe of you all. At last count we have all of the major religions and many minor religions praying for him. There are whole convents saying prayers, priests, rabbis, monks, wiccans and atheist pulling for him. Most importantly he knows he is loved.

6/17/2008

  Somebody pointed out to me they can tell how high my stress level is by the amount of typos, grammar errors and spelling mistakes in my updates. Some of you don't notice them because I go back and change them whenever I reread the site or an error is called to my attention by my lovely proofreader Stacey. I am always a little nervous because of the number of teachers who read this site. One of my favorite teachers of all time reads this site regularly and is a great supporter. Mr. Holmes helped cure me of a major comma splice problem in high school. You will find very few of them on the site, even in the posts with the most grammar mistakes. Hey, wasn't that just a comma splice. He has absolved me of all grammatical errors on this site so I don't really worry about it. The one thing I never realized as a student is how much great teachers really love their students. Before all of this began we had a teacher tell us when we were having  a little difficulty with one of the boys, "Work with me and we can fix this issue." We did just that and she put as much effort into it as if he was her child. She only asked that we as his parents partnered with her and reinforced her work when the boys were at home. We have tried to do that with every teacher the boys have had since. People tell us how wonderful, brave and strong Ben is. We look at him and agree. We cannot take all of the credit. A good portion of the credit goes to genetics, his teachers and other adults who have helped. Our promise to the boys has always been to surround them with people who care and love them. I sit here today and realize that that is the secret of good parenting and I am thankful for my mother who fulfilled that promise to me and my siblings. I am not sure why this posting has become so preachy...I must be stressed out. Thank you indulging me and thank you to all of the great teachers and folks who work with children.

        

  The post was supposed to be about how we are still waiting for a bed at the hospital and that we have set up a Cafe Press store with Green Drakkoman Logo stuff for sale on it. A portion of each sale goes to the Ben Fund. It varies from item to item and is anything over the cost of the item. The site is:  http://www.cafepress.com/greendrakkoman/ 

        

6/17/2008

  I am working from home again today. The company I am working for now has a telecommuting policy that allows me to work from remotely 2 days a week without management approval. I will probably be asking them soon to add additional days. My coworkers and manager have been offering to assist me in any way they can. It is really tough because I am still relatively new to the company. I do miss the folks from my previous job. I had my own office, not a cubicle, and could just close the door and cry. Eleanor would greet me every day. She and Judy would listen if I needed to talk. I am hoping we can get the boys' to Eleanor's place on Friend's Lake this year. Being stopped in the hallway by a CFO asking how Ben was and listening intently with follow up questions so I know he really cared. There were so many others who I know are reading this daily. I miss all of you.

          

  This morning Ben woke up and he came to me crying. He was mad at his mother because "she made me go to sleep last night." He didn't want to go to sleep. He told me he had nightmares last night. I asked about the nightmares, but, he didn't want to tell me them. He told me he was afraid. I just held him and told him, "It's ok to be afraid. Mommy and I are here with you and we are doing everything we can." I reminded him that "We and a whole group of people were standing by his side and fighting with him and like the Green Drakkoman we would never give up." He sat on my lap and melted into my arms and cried a little with his head buried in my shoulder and neck. I stayed strong although I wanted to melt to. I could feel his strength and courage building. He stood up and looked at me a tear still on his cheek and said, "Where's my Nintendo DS? I want to go play with James. Can we watch cartoons?"

         

  We are waiting to hear from the hospital about a bed for Ben so we can start the ifosfomide. I was reminded by 2 people about a drug I had researched before. At the time it didn't seem like Ben would be needing it. It is called Rexin-G. We now have another treatment to investigate. We have options. We have also been encouraged by family, friends and strangers to continue to fight. Most importantly Benjamin has told us that he wants to "get this cancer out of me."

  

   When I us the term community I mean each and every one of you and anyone that is doing anything to help. We have tried to teach our children that we are all citizens of the world and that each of us is part of multiple groups that when combined are our community. I want to point out a couple of ways our community is helping us. Tonight at the McDonald's on Osbourne Rd in Loudonville they are having a fundraiser. If you show up for dinner you will see teachers from Blue Creek pouring sodas for people. If you mention Ben when you are ordering a portion of the food purchase price will go to the Ben Fund. In a couple of weeks the North Colonie Youth Baseball League will be having a pancake breakfast at the Applebee's in Latham. The pancake breakfast is completely sold out. I think there is a waiting list for people. 4 tickets to a Yankees game have been donated and they are being raffled off. The tickets were donated by Bank of America and are Field Box Seats worth about $1400. I will get details about buying the raffle tickets and post them on the site. A neighbor who has some connection with the Red Sox is trying to use her contacts to get them to do something for Ben. Who knows maybe Ben's prediction in January to his teacher Ms. Hock will come true. He told her with great glee that he was going to get to meet David Ortiz. I am still not sure where he got that idea. He loves Big Poppi. He likes that Big Poppi is close to what he and James nicknamed there grandfather - Big Poppa.

6/16/2008

  We brought Ben home yesterday after he received a transfusion and the fever had broken and remained so for 24 hours. They had taken chest x-rays and compared them to his previous x-rays. There was some white wispy lines around the area where the radiation had been concentrated. There were other markings though that looked like they may be lung inflamation, but, the Hem-Onc doctor on the floor this weekend (Dr Porter) didn't like the look of them. She told us to bring Ben in this morning. He spiked a little fever on the overnight so we gave him some Tylenol and it came right back down. Ben had his blood drawn this morning and his counts were low, but, in an expected "ok" zone. Everything was re-exmained and we discussed his lung symptoms and the x-rays. Hoping it was inflammation of the lungs a CT scan was done to verify what was going on inside our little boys' lungs. The CT scan was done and while Ben and I played Nintendo in the clinic Dr Pearce and Stacey talked about what was going on. She came back and we told Ben that the cancer was back. His lungs have numerous small tumors in them. Ben's first words after we told him were, "Really?....Mommy please don't cry." Osteosarcoma sucks!!! On the ride home Ben asked me a question no parent ever wants to hear, "Daddy, am I going to die?" I said, "No honey, we don't think so." Then he asked, "Didn't we get it early enough?"

                    

   Initially it seemed that we would be trying to jump on the next plane to Houston, Tx to get to MD Anderson. They are doing the work with GM-CSF and another drug called L-MTP-PE - Mifurmitide. The combination of the 2 has been showing promising results and is in trials there. I spoke with Dr Pearce a couple of times this evening. She has spent a great deal of time with Dr Anderson today discussing Ben's case. He is already familiar with Ben because of previous discussions regarding the GM-CSF. He suggested that with the number and size of the tumors the treatment would not help Ben. He has suggested that Ben receive 2 high dose ifosfomide treatments to try and shrink the tumors. Assuming the tumors shrink they will then be surgically removed. After removal we will fly to Houston for the treatments there.

            

  Our community is wrapping itself around our family and circling the wagons. Stacey and I have no idea how we could possibly be facing this monster without all of you. I asked Dr Pearce the hardest question of my life and we are in the land of long shots. I trust our team of doctors like no other human beings on this planet. Dr Pearce honestly told me that we had to "go with our gut" if she was in our shoes and Ben was her child she "didn't know what she would do" either. We are following our gut and Ben's request to "get the cancer out of him." We are taking each day as it comes and fulfilling the promises we made to our boys on the day they were born. We are going to see "Kung Fu Panda" tonight and playing Wii.

   

  Tonight there was a big thunderstorm that moved through. It dropped hail that was slightly larger than pea sized. A few of the pieces were almost the size of a dime. Ben was thrilled while we watched it although he was a little afraid of the lightening. I ran out into the storm to bring one of the larger hailstones. As I ran out he was shouting,"You are risking your life!" He looked at the piece of hail and said excitedly, "I got to see hail. I got to touch a big piece of hail." As he went to put it into the freezer I thought to myself, "Focus on the positive."

      

  Please give your children an extra hug tonight and remind them how special they are.     

6/14/2008

   Today was a magical day. Ben and James had no idea what was happening. Although we did let slip this morning that there was going to be a surprise. Around 10 am a fire engine pulled up in front of the house and let loose with a loud - "BRRRAAAAAAAA." We had to unhook Ben from his IV antibiotic and get his shirt on. He was thrilled to see the truck. When the driver, Dave Austin, told Ben he was there to give him a ride and that James and Aiva would go along to he was thrilled. Ben climbed into the front seat and was buckled in while James, Aiva, her father and I climbed into the back of the cab. Ben was a little surprised that 2 of his teachers were at our house too. Ben was more surpised that the truck was there and when the truck headed towards the fire house instead of our house he was not quite sure what was going on. As we turned the corner to head to the fire house Dave turned on all the lights and the siren. As we pulled up to the firehouse there were at least 20 firefighters and a group of folks made up of friends, neighbors and relatives. As we climbed out of the truck they all clapped for Ben and welcomed him. Ben was then led over to stand next to a podium while we all took our seats. The Cheif started by introducing himself and some of the firefighters. He then proceded to say that we were all gathered there to induct Ben as a member of the Latham Fire Department. He handed Dave Austin Ben's badge and Dave pinned it on him as Ben had a huge smile on his face. They then presented Ben with a plaque stating "Benjamin Louis Gerard Stowell   Honorary Member  Latham Fire Department   2008" He was beaming and you could just see his eyes light up as they presented him with a brand new helmet that has his name on it and the number 1. His expression was a mixture of absolute joy and pride. The Cheif asked Aiva to come up and presented both of them with t-shirts and handed her a check for $500 to the Ben Fund and thanked her for being a wonderful friend and neighbor. They also presented a t-shirt to James, Stacey and me. We were then invited into the members room for cookies and refreshments. While we were there an alarm went off. The Cheif invited Ben to respond in his car with them. It turned out to be a false alarm. Ben was wearing the helmet for most of the rest of the day. They also gave the boys baseball caps. The second Ben took off the helmet at home he put on the ball cap.

     

  Stacey and I took James out for a little time alone with us and we bought him a little cartridge for his Nintendo DS that opens up additional levels on some of his games. Soon after coming home Stacey noticed that Ben was looking a little out of it. He told he was really cold. She took his temperature and it was 103.4 degrees. She called the Hem-Onc emergency number. We ended up bringing Ben to the hospital and he was admitted. He is getting fluids. They drew his blood for testing and cultures. He is being given a different, even more powerful anti-biotic. On the way down there he said, "Hey, I don't have to be accessed. I already am. Like Daddy always says,'Focus on the positive.'" Stacey and I just looked at each other and agreed. There is always something positive to focus on if you look hard enough.

6/13/2008

  Last night at the baseball game Ben tried really hard, but, he didn't get on base. I am really proud of him. He stood up twice to hit. He had to leave before his 3rd at bat to go home and get his IV antibiotic. His spirits are still strong. We lost the game so the season is over. All of the boys on the team did wonderfully this year. They progressed throughout the year and worked hard. Even though we lost most of our games they never gave up and they worked together as a team.

      

  Tomorrow at 10:15 am at the S.W. Pitts Firehouse, 226 Old Loudon Rd. in Latham, NY Ben is going to be inducted as a member of the Fire Department. If any of you are in town you are welcome to come to the ceremony. Ben does not know about it so it is going to be wonderful to see the look on his face. We don't have a video camera so I am going to try to go out first thing in the morning to get one. They are planning on picking Aiva, Ben and James up in an engine with lights and sirens. They told us that everyone was welcome to come to the event. We are not completely sure of the details, but, what we do know sounds wonderful. We had a few people tell us that they drove past the fire house today and it was on the sign out front. I hope we see you in the morning.

         

  Ben spent most of the day at the hospital today. He had blood tests, IV drugs and a platelet transfusion. He is very tired. We have noticed that he gets tired and has a shortness of breath. He also gets winded easily. They checked his lungs today with an x-ray and it looks like the radiation has damaged his lung a little. It should be temporary, but, we will be keeping an eye on it.

      

  We have also found out that Ben's Make-A-Wish trip is going to be starting on June 22nd. We will be leaving early in the morning to go to San Diego, CA. We will be going to Legoland and the San Diego Zoo. The main focus of the trip will be a meeting between Ben and Lego executives. Ben wants to discuss the toy business with them. He wants to talk with them about The Green Drakkoman Toy Company. He has some wonderful ideas that I will tell you about after the trip. He also wants to meet a Lego Master Builder. No matter what it is going to be a great trip.

6/11/2008

   Ben has been home since Tuesday afternoon. He has been getting IV antibiotics and the GM-CSF treatments. We have been thrilled to see the response to Aiva's lemonade stand. She is amazing and genuinely adores her friend Ben. She looks out for him on a daily basis. He is doing well, but, you can tell his body is working hard to repair itself. His last radiation treatment was Tuesday and they gave him a certificate commemorating his completion. I must tell you they made something that could have been absolutely terrifying into something that he almost looked forward to. To hear him laughing as he just came out of a room that has a warning sign saying "High Radiation Area - Grave Danger" was absolutely amazing. They work really hard to support their patients and try to do anything to make them comfortable. We saw them work just as hard with adults. As you can imagine Ben came to mean a great deal to the adult patients going through radiation treatments. Several commented to Stacey that they were inspired by his attitude and that they were praying for him.

           

  I have said many times on this site that this is an absolute nightmare for Stacey and me. Yet everytime it gets to a point that we think we can not take it something happens that gets us through the darkness. Sometimes it is an unexpected call from someone apologizing, but, they felt they had to call. Other times it is the love of a child reaching out to Ben or James in any number of ways. We have heard stories of other children fighting cancer having their friends quietly disappear as they become isolated. We are blessed with a community of folks who listne and watch their children reach out to ours with love, friendship and caring. I understand those parents that might be afraid to let their children be close to something that is potentially painful. We do not know what the next few years will bring us. We do not know what the next few moments can bring us. What we can learn from our children is to live each moment with love, kindness and caring. Look for the fun in life. Look for the helpers in even the worst stories on the news.

         

  Right now we have 2 of the boys friends over and they are in the basement lauging and playing with the Wii. The laughter of children is wonderful. We have a baseball game at 6 pm tonight and Ben will most likely not be playing. We are planning on trying to bring him to the game though. We will see.

               

   Yesterday we received a wonderful surprise. Ben does not know this so please don't mention it to him. The main reason I am putting this on the site is to try to keep it a surprise. It seems a great deal of people have found out what is going to be happening on Saturday. On Saturday at 10:15 am a fire engine will be arriving at our front door with lights and sirens. Ben, Aiva, James and a couple of adults will be picked up and brought to the SW Pitts firehouse on Old Loudon Rd. in the engine. Once there Ben will be inducted as a member of the Fire Department during a ceremony they are putting together. I am not sure of all the details, but, I imagine it will be wonderful. Ben dreams of becoming a firefighter/doctor and I am in awe of the men and women who voted unanimously to make him a member of the volunteer corp.

6/9/2008

   This is just going to be a quick update. I will say more tomorrow, but, the lemonade stand was a huge success. They raised just over $10,000. That is 2 weeks of Ben's GM-CSF. Dr Pearce told us to thank Aiva for her. It was a big relief for her to know that Ben's drugs are covered for now no matter what the insurance company decides. You can read more about it at http://www.timesunion.com . There is going to be a follow up article in tomorrow's edition as well. There are also updated stories on http://www.fox23news.com and http://capitalnews9.com . We are overwhelmed by the generosity displayed at the behest of a little girl. We are also amazed at the hard work that Aiva and her friends Lydia and Hannah put into the stand....more to come. Thank you, thank you, thank you.

6/7/2008

   Tomorrow there is going to be a lemonade stand across the street. Our 5 year old neighbor loves to play with the boys and they love her. It is always fun to watch them run around playing TV tag, basketball, bikes and a zillion other games that kids make up as they go along. Last year when the snow melted she held a lemonade stand. At the time her mother had talked to her about what to do with the money she made. The save some, spend some, give some away talk that parents give. Well, Aiva took it to heart and this year she asked her mom if she could have a "Lemonade stand for Ben." When Ben heard about it he thought it was a wonderful idea. He and James were thrilled because they want to sell cookies. It really is Aiva's doing. The adults are just helping. She and her mother walked around the neighborhood handing out flyers. It has really turned into something that seems big. It has been on TV, radio and this morning it is on the front page of our areas largest local paper. http://www.timesunion.com I think there is either going to be an incredible number of people coming through or we will be drinking lemonade and eating cookies for a week or 2. We find ourselves in the middle of an experience that in some respects is a nightmare. It is very easy as adults to forget what matters. What matters most is each other. Aiva wants help make the "booboo inside his arm" go away. I think she is accomplishing much. much more. The article in the paper and the stories on radio and TV have captured the pure love of a liitle girl helping her friend. I am sure that this morning many adults had their hearts grow as they read the paper.

     

  Now on to Ben. He is probably not going to make it to the baseball game tonight. It is really hot outside. He spiked a fever this morning of 100.5. We have been watching him and hoping it would go down. We called the doctor and she told us to watch it and see. Stacey just came in as I was typing this. Ben's fever has hit 101.7. We are getting ready to take him to the hospital.The doctor just said to her, "I am so, so sorry. I know this was important to him." We will see what happens. We hope we can get him home tomorrow for the lemonade stand. He is going to be so disappointed.

6/5/2008

   Ben ended up not feeling well enough to go to the game. We have one more regular season game. It's on Saturday. I'll tell you more about that tomorrow.

    

   I want to tell you about our neighbor, Aiva. She is 5 years old and adores Ben. She and the boys play a great deal together and they always enjoy seeing each other. When Aiva found out that Ben's osteosarcoma was back she asked her mom if she could have a lemonade stand for Ben when the weather was better. Last year she and another neighborhood girl held a lemonade stand and the boys were one of their best customers. It's happening on Sunday on the corner of Schuyler Ave and Hillcrest Rd. from 1-5pm. Ben wants to make cookies. He and James have always talked about a lemonade and cookie stand. Aiva's mom asked if we would help her by sending out a press release. We did and Fox 23 News here in Albany did a story that is absolutely wonderful. Go to their site and check it out. If the link doesn't work just google Fox 23 News.

      

http://www.fox23news.com/mediacenter/local.aspx?videoId=71919@video.fox23news.com&navCatId=6

           

  We also heard that the Times Union called and they want to interview Aiva and Ben too. One thing that has really flabbergasted me throughout this is the children's reactions. They are not afraid and just want to help. They just want to be Ben's friend.

        

6/4/2008

  Over the weekend the skin under Ben's arm continued to get worse. We were trying to keep air getting to it as much as possible: no shirt when in the house, periodic blow drying of the area, a little neosporin. We were also trying to keep it clean and put him in the shower several times  and used the hand held shower on the area. It looked like a really bad road rash and painful. Benjamin never complained of being in pain - only that it was itchy and he couldn't scratch. His platelet count was very low on Friday. Actually it has been very low the last couple of weeks. Ben's platelet count has been just above 50. We made it through the weekend without a trip to the hospital. No fever and any bleeding he had was controllable. He was acting a little lethargic and his appetite was suppressed. We still went to church on Sunday. After church we went to Friendly's for breakfast. Ben scared me because at the end of the meal he at first said he didn't want his Candy Shoppe Sundae. I asked him ifhe was sure and he asked for it to go. That has never happened before.

    

   On Monday we met with the doctors. I actually had the chance to step away from work for an hour and go to the hospital with Stacey and Ben. The Drs. agreed that it was starting to look really nasty. They put him on a really powerful antibiotic on the highest dosage for his weight. The pills are huge, but, he does it. Last night he went to bed before we had a chance to give it to him. We were able to get him to sit up and take the pills. He did it in his sleep. It was kind of funny to watch. He looked like Bugs Bunny in the old cartoon with the ether. "Nighty, night bunny rabbit." They also had us add saline baths or compresses to the areas affected. It all seems to be working because he has bounced back and has gone to school everyday this week for at least part of the day.

       

   Tonight at 6 we are supposed to have a baseball game. He really wants to get a hit this season and get on base. I am hoping he gets a chance to bat a few times tonight. I know he can hit using the one arm swing I have taught him. When he has had enough energy he has been practicing.

5/31/2008

   Today started with me getting up really early in the morning - 6 AM. I seem to be having more of these early mornings lately. I went to Price Chopper to fill a couple coolers with soda and water. As many of you know the Double H Hole in the Woods Camp has been a wonderful oasis for us since last summer. It is located near Lake Luzerne  and focuses on children battling life threatening illnesses and their families. We have been blessed with a community of friends, relatives, aquaintences and total strangers who seem to turn up with creative ideas and simple solutions keeping us out of the darkest places this journey can take us to. We decided to get a group of people together to go to the camp and volunteer for their final Community Help Day before the camp opens for the summer season. It is wonderful to be able to give back, even as people are giving and helping you. I was really disappointed when the schedule for baseball was announced and our team had a game schedule for May 31st. I have a great team, a great book coach and an amazing group of parents supporting our players. I knew they could handle a game with out me there. I was just going to miss the joy of our team as they play with all there heart. Ben and James stayed home because they were too young to help and they wanted to go to the game. The team needed them to be there. James went to the game at noon and my understanding was that he gave his usual all. Ben on the other hand has been getting increasingly tired as the radiation and chemotherapy has gone on. He spent most of the day on the couch. He was really disappointed that he couldn't go to the game. We had been working on his hitting and last Tuesday he was doing a great job. I have had to come up with a way for him to bat basically using one arm. He has 7 more radiation treatments scheduled. We are hoping he will start bouncing back. This afternoon after I came back from the Double H Camp he was sound asleep on the couch. When Ben is taking afternoon naps like this it usually means his blood counts are plummeting. It is called neutropenia. He is also pale. We have been watching and waiting for his temperature to spike. So far so good...no fever. He will probably need blood transfusions this week. I am hoping that he bounces back, because I know he really wants to get at least one hit this season. We only have 2 more games this season and then there is a tournament. We have learned from this journey that it is a real rollercoaster ride. We follow Ben's lead and let him set his pace.

         

   By the way there were 175 people today at the camp. Our group spent the day making beds and cleaning floors. Stacey laughed when we told her what we had done. You can guess how often I do those chores at home. Upon arrival at the camp we were thrilled to see 2 teachers from Blue Creek there. They had already committed to going with another group before they heard of our request to form a group. They thought it would be nice to surprise us...it was. Tomorrow is another day and Ben's spirit is strong. 

5/30/2008

  Another tough day for Ben. The radiation is really taking a toll on him. He tires and can be a little cranky. The area where he is receiving the radiation is raw. When I ran one of the marathons I had really bad chafing and it looked better than this does. His entire armpit is affected and the skin on his shoulder looks red and paper thin. The only thing he complains about is that it itches sometimes and he cannot scratch it. If he scratches it bleeds and then does hurt so he knows he can't. His platelets are low so we worry a little about the bleeding part. I'll tell you more about Ben's day, but, I want to talk about James tonight.

        

  I woke up this morning around 5:30 AM without the alarm clock and I was wide awake. I went in to the office and my mother had already gone down stairs. The office is also GrammaMacs bedroom. I went downstairs and she was sound asleep sitting on the couch. I went back to the office and logged into work. Around 6 AM James came into the room. He said to me, "I need to play on the computer." I replied, "Yeah sure, just like every day." He said, "No, I need to play that Re-Mission game. Do you know where the disc is." I told him I had no idea where the disc was. He than asked if that game could be played without the disc. "I think it can. Really, I think you don't need the disc to play. I know you don't." I told him we could try it, but, the second Ben woke up he had to turn it off. He agreed and sure enough I had installed it in a way that the disc was not required to be in the computer to play it. I think it was an option at installation.

        

  Some of you may remember me talking about this game. It is called "Re-Mission" and is distributed by a company called Hope Labs. It is a game where the main character is shrunken and put into childhood cancer patients. Depending on the level and the type of cancer she is armed with things like chemotherapy drugs, pain meds, relaxation techniques, fever reducers, radiation guns. The first level she is put into the bloodstream and battles Leukemia cells. It is a neat, but, rather hard game. As you guide her through reasonably looking graphics. The cancer cells look rather menacing and spikey. You have to be careful to only hit the cancerous cells. It is interesting and I can understand where some patients might find it empowering. When I tried it with the boys initially James seemed to like it a little, Ben said, "It creeped him out." So we stopped playing it and I don't think it has been played since last spring, early summer. James was adamant that he had to play it. We started it up and refreshed each other in the game controls. I left him there for a little while to get myself dressed. I came back and he was there killing cancer cells and refilling the character guns with fresh chemo drugs. I asked him how he was doing. He said, "Great, I'm killing the cancer. I have to get to the next level. You have to help me get to the next level." I said I would try, but, we wouldn't have enough time before school for him and work for me. He said, "Ok, but, I have to get through the next level." I thought about it later. I think the next level from where he was has a young boy with osteosarcoma.

         

  It is hard to get James to talk about what he feels is going on with Ben. He often says he doesn't want to hear it or tell us he doesn't have any questions. I know he talks at Noogieland and I know he has talked to the school counselor. I think this morning he was talking loud and clear...through the game. He is such a good kid and I can't imagine what it is like to be Ben's brother. I wish he would talk more to us, but, on the other hand we are working hard to give him resources to go to and as many opportunites to talk as we can. I mentioned this morning to the counselor at school and she is going to remind James next week that she is available and see what she can do to help him.

           

  Tonight at the baseball game we lost 9-6. It was a great game and the team played well and had fun. We rallied in the last 2 innings, but, just couldn't catch up. It was very exciting and we turned 2 double plays. One of the double plays was done single handedly by the boy who was playing first base. He caught a line drive in the air and touched first base with the runner halfway to 2nd base. Ben didn't go to the game. School, radiation and some mild play at home had tuckered him out and he was looking a little pale. His teacher at school said she thought she was going to have to carry his backpack when he left the room to go to the office to meet Stacey so he could go to the hospital for radiation. We also knew he was not up to it when he agreed so easily when Stacey suggested he stay home. James went to the ball game and he played in typical James style. I cannot explain it in writing you will have to make it to a game. For his first at bat he used this too long, too heavy green bat that he loves. I told him he needed to use a smaller bat. He insisted so I said, "If you don't get a hit the next time I pick the bat." He agreed. He didn't get a hit. He got hit. Actually he was walked, but, he has been hit twice this season. He took his base with a big smile and jogged to first like he was going to go around the bases after a home run. The next at bat we had 1 out and the bases were loaded. I gave him his brothers Red Sox bat. He steps up to the plate and in his goofy good natured way takes 3 balls. He swings at a wild pitch and misses. He swings at a good pitch and it goes just foul as it rolls towards first base. I shout, "See, you CAN hit the ball. Swing just like that at the next good pitch." The next pitch he just tips the ball. Full count plus one foul ball, bases loaded. The pitch, the swing. He hit the ball. It is a grounder. Past the pitcher. Past another player. Bobbled in the dirst. The crowd is screaming like it is going over the fence. He is running at his own speed towards first. The boy who was on third is already touching home plate. The crowd screams even louder. The ball is bobbled as the other team hesitates to throw to any base. The throw it to first base and James touches the 1st base just before the first baseman. It was incredibly close, but, a great call was made. Some of the opposing teams parents are even cheering for him. The boys on the team were jumping up and down shouting, "You did it James, you did it. You hit in the run. It was the first score of 3 run rally in the last inning. The other boys on the bases had gotten there with a run and 2 walks. We lost, but, damn it was a fun game with 2 rallies and some great plays, against a good team that played fairly. The kids that did the umping did a great job.

         

  Tomorrow I am meeting with a group of people between 8 and 8:30 in the morning at the Blue Creek Elementary School to go to Double H Ranch near Lake Luzerne for their last clean up/ prep weekend before the summer season. We are planning on carpooling to save gas. Some people who live north of here are heading up on their own. I think the numbers will end up being between 10 and 20 people. I will tell you all about it tomorrow night. We are going to leave for the ranch at 8:30 sharp. It is a great place and has been a wonderful oasis for our family. We attended a family weekend retreat last fall. James attnded a sibling weekend camp a couple of weeks ago and Ben spent a week there last summer. He is going back this year from July 3rd-July 8th. Ben is thrilled because he found out that one of his favorite players from the Siena College Women's Water Polo Team is going to be a camp counselor there this summer.

5/29/2008

   Today was a long day for Benjamin. In fact I think it was a long week for him. He has missed school most of the week because of his treatments and some of the side effects. Ben's morning began with Stacey giving him his GM-CSF treatment before taking off for the hospital at 8 am so he could get his radiation treatment at 8:30. He has 9 more days of radiation left. After that he went upstairs and had his blood drawn for testing. He just holds out his finger for the finger stick like he is pointing at something good to eat. He does make a snide comment or 2 while the technician milks the blood from his finger. After that it is up to clinic to talk to Dr Pearce and wait for the results. He needed his platelet count to be 50 to receive his chemotherapy - gemzar. The results came back with a platelet count of 51. So he spent the next 1 1/2 hours getting the Gemzar infused. While waiting for the counts Master Yoshi came in to the play area and did a karate class. Ben loves doing it. We have to get the boys to his studio in Clifton Park for classes. All we need is a wormhole to give us more time. Maybe after baseball is over we can work it out. He came home around 1:30 pm and was very tired. Another day with no school.

         

  I spoke with Ben's case manager at the health insurance company. She explained how she understood we were working with Dr Pearce to get them the information they need. I reminded her that our initial health insurance carrier had approved the GM-CSF and that if I had to pick which one would deny the treatment before all of this I would have expected it to be the other carrier. She did have some good news. She explained that "IF" it was approved it would be retroactive.

         

  Dr Pearce was amazed at the wealth of information that I bombarded her with these past couple of weeks. I have you all to thank for helping me with this one. She told Stacey that one of the articles had some great information that didn't really apply to Ben's case, but, was just what she needed for another patient. She is also excited about some other possibilities for study participation that we may have opened the door for.

        

   This weekend is the annual radiothon for the Children's Hospital at Albany Medical Center on 810 WGY a local AM station. They interviewed Ben and me one day when he was there for treatment. Dr Pearce heard a preview for it and heard Ben. She said it was wonderful. So if you tune to 810 on your AM dial you may get to hear Ben.

        

   We have a basball game tomorrow at 6 pm at the Colonie Baseball Field Complex. Ben and James have both been working on their swings. I came up with a way for Ben to swing mostly with his left arm and he seems to be doing well with it. He told me he is trying to save up his energy for the game. I may borrow a left handed baseball glove for him to try in the field. He can throw with his left arm.

5/28/2008

     The other day a co-worker asked me in an email how Ben was doing. I crafted the following response and sent it to him.

              

   “He's doing ok. He's been having a few issues. He gets tired really easily and quickly. His skin where he is receiving radiation is breaking down. His blood counts are dropping and he will most likely need a transfusion either today or early next week. He is having trouble concentrating and remembering things. Carrying on conversations can be interesting because he changes subjects on the fly. His spirits are up and his will is strong.”

              

      I re-read the email after he sent a kind and supportive response. Part of me is aghast that I could write that Ben is “ok” just before writing 6 sentences with symptoms that would make most parents scream. Am I becoming desensitized to the suffering of my child? How can I stay so positive and nonchalant? The final sentence in that response answers both questions. Ben’s spirit, will, constitution, faith, courage, strength is what fuels the fire that keeps us going. I realize that my 7 year old son is in the middle of a battle for his life. He is not only in the fight, he is the battlefield. He has so much life in him. I watch as children are drawn to him. They want to play, have fun, smile, laugh. They cheer his accomplishments and see the life he has to share. He uses his energy to live and do the things that bring him joy; even his homework.

                  

      We have been asked over and over, “What can we do? Is there anything you need?” I have so much difficulty answering. We are overwhelmed and don’t know which way to look. I think if you feel led to do something for us then we probably need it without knowing. A group of friends took care of our outdoor spring clean up. Another friend showed up with a mop and broom and demanded to clean our kitchen floor while making us dinner. Our neighbor across the street is holding a fundraiser next week. She is really cute and is only 5 years old. She adores the boys, especially Ben. She came up with the idea. I think her pre-school class and some adults (her parents) are helping her. She will be opening a lemonade stand for the day and will be selling lemonade. When Ben found out he asked if he and James could make cookies to sell too. If you are going to be in our neck of the woods next week (6/8) feel free to stop by and see how it goes. I think that’s the date.

  

         I realized just how much stress we are under last night. Stacey and I had a big fight over how to mix Ben’s drugs of all things. It all came down to .5 mL of distilled water. It was an argument that lasted three sentences. There was no need for this disagreement. It was pointless. I was the catalyst for the disagreement and will be apologizing profusely this evening. It takes me a while to process my faults. I am also going to be getting the massage that Stacey and the boys have been telling me I need. I think I may also start running again. I am going to kindly and lovingly suggest that Stacey finds something to relieve some stress too. If anyone wants to help with this one I would appreciate it.

5/26/2008

  The baseball game went really well. Although, the team lost they played hard and had fun. They are really supportive of each other. Ben tried really hard to swing his bat. The coach pitches for the first 2 innings so I was pitching. When he swung the bat I saw him wince. His right armpit is really affected by the radiation and is almost raw. It looks painful, but, he only complains that it itches and he has a hard time resisting the urge to scratch. I explained he could let go of the bat with his right arm when he swung the bat as long as he held on tight with his left. He tried, but, it is too difficult right now. I am going to get him a wiffle ball bat and work on a one arm swing with him. He played in the field and managed to toss the ball to other players a couple of times. The whole team cheers him on. He also supports them as the team doctor he takes his responsibilities seriously.

        

    Last night one of the neighborhood girls from his school stopped by to see him. It is really something to see the little girls who are enamoured of him. She stopped by with a couple of riends and the played on the swing set with the boys until it was almost too dark for them to ride their bikes home. It was good for Ben to get outside. We are being very careful about sun exposure with him. The baseball game did it for the weekend. Hearing the 3 girls, Ben and James laughing and joking with each other while they played on the swing set was magical. I think in 30 minutes of play that playset saw more action then it did all year last year. I am hoping it gets a good workout this year. I think while the rest of radiation happens Ben is going to be living a Vampire lyfestyle though. We are buying Sun-Blocking clothing for him today. When the girls came over he didn't have a shirt on because of the ointment we had slathered on the area of his radiation treatment. We also keep him shirtless as much as possible because his skin is fragile and the friction of shirts rubs off what skin he has. The young girl who likes him was a little shocked at first when she saw him. I watched as she processed it and then just started playing with Ben and treating him as she would have if she hadn't seen his treatment area. Her parents should be proud of her and I will make sure I tell them when I see them. We did put a shirt on him though when he went outside.

         

    Right now he is downstairs playing with the Wii. A good friend of the boys has stopped by to play with them. We will be going to Chuck E Cheeses soon. They are having a great time.

        

   Ben is taking to the aerosolized GM-CSF treatments. He receives it via a nebulizer. The interesting part is that our health insurance is hekping with the nebulizer equipment, but, not the GM-CSF. I even think they are covering the distilled water and saline solution we are mixing the drug with. We are thankful for any coverage they are giving us. They have still not denied the insurance coverage for the GM-CSF and we are working with some amazing people to resolve the issue. The important thing is Ben is receiving it.

5/23/2008

   Tomorrow the boys have a baseball game at Noon. The game is at the North Colonie Baseball Complex on Rt 9 North of Guptill's Roller Skating facility. Ben will probably be playing designated hitter and team Doctor. If you need directions you can find them at http://www.ncyba.com

5/23/2008

   Time flies when you are grabbing every moment you can to be a family.  In the past couple of days I have come to realize just how exhausted Stacey and I are. I am also amazed at Benjamin's strong constitution and how he and James keep us all going. We have been spending a great deal of time trying to find the documentation our insurance company is requesting so we can move Ben on to the next necessary treatment. I have not done the updates because I have literally been spending every moment of computer time, outside of work, searching the internet and sending emails to folks looking for the information that the insurance company is requesting before they will approve it. We are amazed at the outpouring of support and emails from folks, folks who know folks, who know folks, who were asked to help find scientific literature about GM-CSF as it relates to treatment for osteosarcoma. We literally have a small army of people looking; including medical professionals. GM-CSF has been around for a long time in drug circles. It has been used since 2003 for the treatment of lung and other cancers. It has very few side effects. The problem is that until recently it hasn't been tried with osteosarcoma. Osteosarcoma is rare and the drug companies usually target their testing and trials for larger cancers first. It's kind of like digging for gold. You first mine the areas that have the visible large viens of gold and then you go through the dross later. We decided that we cannot wait for the insurance company. Stacey and I discussed it and prayed about it. We have to treat Ben now. Ben will be starting his GM-CSF treatment today. Anthem will be delivering the equipment and drugs today so we can start him on it. He will be receiving 2 treatments a day, 7 days a week, one week on one week off for a year. It is going to cost $5000 for each week of the drug. We are hoping that the insurance company will come to their senses early in this process and approve the payment for the drugs. Maybe it will even be retroactive to the start of treatment. As I have learned more and more about GM-CSF I am convinced that it is necessary for Ben's long term health.

         

  We have been lucky throughout this that we had taken steps to lower our debt load during the years before Ben's diagnosis. We have also not maxed out the equity in our home. We have the faith and experience to know that God and the universe will provide us with the means to afford these treatments for Ben. We learned when we were "starving artists" that what was truly needed would be there for us. It sometimes meant working really hard or taking advantage of stange coincidences, but, everything we have really needed as always been attainable and possible. When Ben was first diagnosed so many people reached out to help that it was overwhelming at times. The most amazing fundraiser I have ever seen raised enough money in one day to make sure we had no financial worries regarding his first year of treatments and even sent our family on a dream trip to Disney World to celebrate the ending of chemotherapy and Ben's being NED. We did not ask for the help and humbly accepted all that was given to us. Today I realize that I now need to humbly ask for your help. We are open to any ideas that are not illegal or immoral. The Ben Fund is still set up at HSBC, Latham Office, 494 Troy Schenectady Rd, Latham , NY 12110.

  Thank you again for all of your love and support.

   

5/15/2008

  We have been having a great time just being a family. I will be writing a couple of updates tonight and tomorrow to bring you all up to speed on the trip we took to Ct. for Uncle Rob's graduation, bringing back GrammMac and going to a Lego Art show. We have also been having a great time with baseball this season.

   

  Our biggest difficulty has been with getting our insurance to cover the next steps in Ben's treatment. The insurance company is requesting "published data" on the efficacy of inhaled GM-CSF for the treatment of osteosarcoma before they will approve it. We are searching for it now. The drug has been doing really well in the clinical trials and there is some information, but, we haven't found anything officially published. Ben doesn't qualify for the trials. If anyone knows anything about GM-CSF please let me know.

5/10/2008

  If you are planning on going with us to the Double H Hole in the Woods Camp on May 31st to help with their final push to get ready for the season please send us an email - greendrakkoman@hotmail.com. You will need to fax them the form ASAP so they can plan the jobs we will be doing. There will be time to tour the camp. The form can be found at the following address - http://www.doublehranch.org/pdfs/LTS%20PDFs/2008/Community%20Work%20Day%20%20Form.pdf I was able to get both Part 1 and Part 2 of Ben's interview on the last day of camp last year uploaded to the internet. Both interviews were conducted a little while before we picked him up. He had a wonderful week and the place is incredibly special. Please enjoy these. I am reposting part 2 so you don't have to scroll down. Thank you for your love and support.

       

Interview with Ben at Double H Hole in the Woods Part 1

  

      

Interview with Ben at Double H Hole in the Woods Part 2

    

5/9/2008

 It's hard to believe we are so far along in May. We will be going back to only 1 insurance carrier on May 15th. We have had a couple of groups of friends mention fundraisers to help us with the costs of Ben's treatments. So far we have been doing ok. I had signed up for a pretax health savings with my employer so we are prepared for the deductibles and co-pays for a while. We are still learning what will be covered under our new health insurance plan. We have also talked with our new CDPHP case manager on the phone. She started the call by saying, "Welcome back." I couldn't help think that with Ben's bills they were really happy to see us leave. I must say they have been great to deal with so far. Although the insurance covered it we have seen the bills for Ben's surgery to remove the tumour in his lymph gland in his armpit. It was $97,000 and I don't think that included the anesthesia. It looked like Blue Cross picked up the tab on that one. We have to say looks like because we have found that bills, deductibles and missed co-pays crop up months after we think they are paid.

       

  We had a talk with Dr Pearce yesterday. She was talking to us about insurance and the Avastin. We still don't know what the costs to us will be for that drug. We were asking her about the other drugs she is considering for Ben. She said she was weighing a couple of them and wanted to see what our insuramce would cover. We told her not to worry about the costs. We asked her to find the best treatment for Ben irregardless of what the insurance company would pay for. She said she, "Doesn't like to put her patient's houses at risk." We asked her not to take dollars into consideration. I said to her, "We have enough faith in the universe and in our friends and family that we will figure out a way to pay for it." When we came home from the hospital I found out that our  neighbor across the street is going to have a Lemonade Stand in June to help with Ben's treatments. She is a really cute 4 year old and it was her idea. She is getting her pre-school to help her and one of our other 4 year old neighbors too. Ben received his gemcitabine chemotherapy just before getting his radiation treatments. It seemed to take longer than usual. When they were done they asked us to come into the treatment room because Ben had something to show us. We were both a little aprehensive. As we approached we heard giggling and knew something was up. They pulled back the curtain and there was Ben with a tatto in the middle of his back.

       

      

  It seems Ben had an itch and the radiologists decided to scratch it. They used the pens that mark the targets on people to draw SpongeBob. It isn't permanent, but, it's going to be on his back for a while. That was yesterday. I didn't go today because I had a great deal of work to do. I have a huge deadline looming at work for my major project. Imagine my surprise when he came home and showed me another tattoo.

     

       

  It's like being in an episode of "AMC Ink" around here. He is so funny showing them off. He even wiggles his back and arm to make the characters move. The scarrs that you see on the back shots are from his thoracotomy operation. His attitude is infectious and he loves the radiologists that are giving him his radiation therapy. No matter what he is doing he is looking for things to make it fun. He is aslready timing and critiquing the nurses who as the access his port. The nurses and Dr Pearce have commented about how he is really facing the treatments with a new energy and additional courage.

5/6/2008

  Ben is doing really well with the radiation. It is a normal part of his weekday. School is doing a great job of helping us keep him balanced and educated. We have noticed he seems to tire a little easier. Yesterday the entire 2nd grade went on a field trip to the Herkimer diamond mines. They had a great time learning about the diamonds and smashing rocks while they searched for their own stones. James told us the night before he wanted to find enough diamonds to "Buy Target" when they returned. James was in a group with one of the other dads and they went to a different part of the mine. At one point I was with Ben and one of his friends. He was telling the little girl how his brother James is an excellent miner and indeed was a master miner because James had gone to mine garnets while Ben was at Double H last summer. Ben wanted to go find James to get pointers from him. At the end of the day it was Ben who fund the largest diamond. During the presentation the woman from the mine had told the kids how they called the stones that could be cut and faceted cutters. Ben wanted to bring a small grayish piece of quartz he found in to the gift shop to be appraised. I told him he could and he ran off ahead of me. As I entered the shop he wqas looking a little dejected and told me that they said, "It's a nice piece of quartz to add to his collection, but, wasn't worth anything." I handed him the baggie with the larger stone in it and he walked back to the woman with a bounce in his step. She smiled at him and asked if he had a question. He held out his stone and said, "I have another diamond for you." With great pride and flair he said, "I call this my cutter." She took it from in a kind skeptical way and held it up to look at it first with her eyes and then with a jewelers glass. "You may have something really nice here." "You do. We can get, maybe a 1/2 carat stone out of this for your girlfriend or mother." She then started to ask him ifhe had a girlfriend. He wasn't quite sure how to answer he has so many. He decided it would be best to give it to his mother after they facet it. So he has his Mother's Day present. A 1/2 carat Herkimer Diamond. I wasn't with him when he fund it, but, he sure was proud of himself when she told him it was that largest cutter for the day and he won the cutter award.

        

  I drove him back from the field trip because the school wanted to make sure if the buses were delayed he wouldn't miss his radiation therapy appointment. He also had been having some diarhea issues and we didn't want him to embarass himself on the buses. He didn't have any troubles on the trip and talked about the diamond the whole way back.

5/1/2008

  Ben has had 3 radiation treatments and is tolerating them very well. He finds them very uneventful and is already settling into a rhythym with them. The radiologists are doing their best to work around Ben's busy school schedule for us.

    

  We have the information for the Double H Hole in the Woods Camp cleanup weekend. It is going to take place on May 31st. We know that is a bad weekend for a few of you, but, we really didn't have a choice. They are trying to get 150 people there to get it all done. I asked about kids and they said as long as the parents will supervise them and be completely responsible for them they do not have a problem with it. The kids have to be able to rake, clean or help with things like simple household chores. We are planning on leaving the Blue Creek Parking lot between 8:30 and 9 am for the drive up there and we are anticipating leaving the camp sometime around 3 pm. If people want to carpool it would be great. I am still getting more details about if we need to bring supplies. We will be getting lunch for our group around 11:30 or noon. We estimate 4-5 hours of actual work. If you are going you need to fill out a form that is available on their web site. It is a liability release - http://www.doublehranch.org/pdfs/LTS%20PDFs/2008/Community%20Work%20Day%20%20Form.pdf We have already talked to them about coming. We are not an official group because we don't have insurance. You can put on the form that you are an individual and doing it in honor Benjamin Stowell. The video below is why you are volunteering to do this. Thank you!

Interview with Ben About Double H Ranch

 

4/28/2008

 Weekend Update
    
What a great weekend we had. Saturday was opening day for Little League? We had an opening day parade and ceremonies, team pictures and then a game. Our team played really well. We had one bad inning and the final the final score was 7-2. Unfortunately, we were on the side with 2 runs. We managed to get a good number of hits and most of our players actually got on base at least once. The coach needs to work on pitching and teaching our players how to wait for the right pitch. The other team liked to wait until the bases were filled with walked players before they started swinging. The important things was that although there were a few tears this week the boys all had a great time and their parents did too. The coach was really tired after the game though. At one point a lady in the crowd started to tell the coach to lighten up because the coach was trying to get Benjamin to stand in the right spot in the outfield by saying, “Ben… Here… Ben… Stand here” in a rather gruff manner. Ben was day dreaming and needed to be reminded to pay attention. All of the parents started laughing because I am the coach. I walked over to the fence and said to the woman, “That’s why I tell all the parents on the team to make sure I am not too rough on my own.” I thanked her for speaking up.

      
    On Sunday Ben and I went church. There was a lovely woman sitting behind us who is also starting radiation therapy for cancer. During the time of the service that people greet each other and shake hands she and Ben compared the drawings that had been made and quietly reassured each other. It was very sweet and I think that his attitude bolstered her outlook. During the children’s story time the minister talked about friendship and being friends with god. He spoke of a time when he and family volunteered at a summer weekend camp for families and kids fighting cancer. He described the friendship and trust that the families and children shared with the volunteers. He mentioned his daughter driving a pontoon boat around the lake with a small child with an IV pole by his side. His intention was to highlight that when we are friends with others and doing nice things we are friends with god. It made me proud when it was Ben that actually made that point for him. It was not his intention, but, I think it inspired the adults in the congregation that even when you have to have an IV pole attached don’t stop living. One of the biggest lessons the children have demonstrated for me is to live life as best you can no matter what you are facing. Ben’s determination to find happiness, light and life each day has been an inspiration.

                 

     Today Ben had his radiation therapy simulation. He was able to see exactly what will be happening over the next 6 weeks. It went well so he will be starting the actually radiation tomorrow. We have talked with his teacher and his appointments will be at 1:30 PM for now. We will be making arrangements for people to take James or meet him after school at the bus stop. I will also work from home 2 days a week to meet him. My mother will be coming up from Florida soon and she will be here for him as well. The rest of this week and next week will be interesting. We know from past experience that we will eventually fall into a very weird routine that will get us through all of this. In addition to meeting James after school we have had a few people offer to bring us meals this week. As we figure this out we really appreciate all of your support.

4/26/2008  Part 2

    

  We have another update on the specifics of Ben's treatment and I wanted to let you all know. Ben will be starting radiation this week. He will undergo a simulation of the treatment on Monday and then the radiation will start on Tuesday. One week into the treatment he will receive Gemcitabine via and IV. The Gemcitibine is a radiation sensatizer and will make the radiation more effective. The radiation treatments will go on for 6 weeks - Monday thru Friday.

   

  In addition to the radiation treatments Ben will be receiving inhaled GM-CSF. It will be starting shortly, probably this week. We have to get the equipment and be trained on using it. It is similar to a nebulizer and he will be receiving twice a day, 7 days on, 7 days off for 6 months. So the GM-CSF will continue after the radiation treatments are over.

         

  Post radiation treatment Ben will begin to receive systemic chemotherapy. He will be receiving a drug called Avastin. It is a monoclonal antibody that stops vessel regrowth. It is a new drug that was only available in clinical trials a year or so ago. It is very expensive. The company who manufactures it actually prices it by the income level of the family or patient receiving it. If the family makes under $100,000 a year the most that they will charge the family is $55,000. It costs approximately $2000 a shot and estimates are that it averages $4400 a month for most treatment protocols. We are not sure of the exact protocal Ben will be following with the Avastin. We do not know yet what our health insurance will cover and what the deductable and copay will be for the drug. We will be talking with the insurance company this week to find out.

    

   Ben will also begin receiving some more conventional chemotherapy as well. Dr Pearce is still weighing the options on those and we will be discussing it further. We have time to decide which direction to go with that phase of Ben's treatments because they wouldn't begin until after the radiation treatments are over.

      

   Until May 15th we are covered under 2 primary insurance plans. My previous employer covered us until May 15th and our coverage under my current employers insurance plan began on April 1st. So far they have been playing nice and in fact for some things one has picked up the copays and deductables of the other. Too bad we can't complete Ben's treatments before May15th. I joked with doctor and asked if we could stock up on all the drugs while we had the double coverage.

     

   The treatments will be given at home or as an outpatient as much as possible. We want to do everything we can to preserve a normal life for Ben and James. We anticipate that there will be times when Ben will be admitted to the hospital not for treatment of the osteosarcoma, but, for treatment of the side effects.

4/25/2008  Part 1

    Ben came home from school today because he was vomiting. It is completely unrelated to his osteosarcoma treatments and appears to be a "bug" that has been going around. The boys have come up witha Superhero club and last night they held their first meeting while we were at Aunt Carol's. Every member of the club has to pick a Super Hero to be or represent. Although the Green Drakkoman is tacitly involved he is not allowed to be a participant. We have all put a gerat deal of thought about who our Supoer Heroes would be. I upset the boys because I chose Jean Grey. Apparently having their father cross gender lines in an imaginery Super Hero picking contest is rather disturbing. James suggested I be Thor. Ben offered Batman, Moon Knight or Dr Strange. I told him I would pick Dr Strange then. Ben chose Spiderman and James' choice is Wolverine. Stacey is Mrs. Spiderman. I didn't even know there really was a Mrs. Spiderman, but, it seems there is and she appeared in the Spider-Man Family comic book in February 2007. I always thought I was up on my Spiderman, but, I must be out of touch. So our question to you is: Who would your alter ego super hero be if you could be any of them? Send us an email or enter it into the guestbook. Ben wants to know what super heroes in addition to the Green Drakkoman are on his side. I asked him about picking villians and he said it might be ok because in many of the stories even the villians have been known to fight on the side of right. It would also be cool if you said why you made your choice.

      

   I am actually a little surprised at how much the boys know about the super heroes and their stories. When I was a boy my mother subscribed to the notion of getting us whatever we wanted to read as long as we would read it. I remember reading Treasure Island first as a comic book at my grandmother's house. The boy's Uncle Rick has brought quite a few comic books for the boys and they do read them. James devours them and reads them over and over. I didn't think Ben was reading them that much, but, I guess he is because he knows the stories.

4/24/2008  Part 2

   The primary goal of this site is to update everyone about Ben and how he is fighting his battle with osteosarcoma. A secondary goal is to chronicle the effects and experiences of our whole family and to thank the amazing people who have and are supporting us. The boys wanted to play Little League Baseball this year and we signed them up before the osteosarcoma returned. I had committed to be the boys coach and a few of their friends had actually asked me about coaching. With the return of the evil alien I debated about dropping out as coach. In fact it has been weighing heavily on my mind this past week as we started practices last Saturday and with opening day coming up on Saturday. I have a great team of kids, a fantastic book coach, and an amazing group of parents. It is going to be a good year for baseball. Our family's schedule is about to get incredibly crazy and I am still a little unsure about the season. It will be good to have a different activity and I know Ben will be looking forward to each game and practice. The last couple of practices he has pooped out a little and since the surgeries he is not hitting or fielding as well as he was before them. When he takes of his shirt and you see the incisions and you can't help, but, be amazed that he is even running around. As you can imagine our focus has been on living life and having fun with Ben and James as we are getting the treatments started. So household chores start to suffer some.

       

  Because of Ben's trip to the hospital today I decided to telecommute and my original intention was to go with Ben and Stacey to the hospital. Instead Stacey talked me into riding on bikes with James to school and working from hme. If she needed me I would drive to the hospital. After I  brought James to school and made the earlier post I was home alone. I had a conference call at 10 am and it was still before 9 am. The ton of bricks dropped and all I wanted to do was climb back into bed, curl up in a ball and cry. I realized as my bed was calling to me that it was a sirens song that I had to resist. I decided to force myself to take a shower knowing it would make me feel better and to get myself dressed for the conference call as if I was in the office. It worked and I felt better all day. Ben came home and he has some pretty colored markings on his chest and arm that will help the radiation oncologists target the radiation. He is very strong and actually looking forward to it because he knows it is fighting the evil alien. He will start next week. His Mom brought him to school as I worked from home. I was just finishing up for the day when an amazing man showed up on our doorstep. He introduced himself as AJ and handed me an envelope. He told me that a group of families who are friends with us and whose kids play with the boys had decided to help with a project I hadn't been able to get to, spring lawn clean up and ,mulching of the front yard, and that the letter in the envelope would explain it. I probably had a really stupid look on my face as I turned to go back into the house. I opened the letter and it read: "For the Stowell's     Surprise!      One less thing to worry about......" "From your friends" and it listed the 8 families who had arranged for this to happen. I don't think he saw me, but, I sat on the stairs inside the house for a good 5 minutes and just cried. I realized that I had asked one of the folks a couple of weeks ago if they knew of anyone who did lawns because I just couldn't get it together enough to do it myself this year. AJ did a beautiful job and even mowed the lawn. We ended up leaving as soon as I finished working, because Stacey's Aunt was expecting us for dinner and to help her with her computer, so I never had a chance to thank him. We were also picking up our "new to us" car from her. She decided to buy a car earlier than her original plans and sell us the one she was replacing for a little less than what the dealer would give her as a trade-in. The boys went straight to bed when we returned a little while ago and I found myself just staring at the lawn. Stacey asked if I was all right. I looked at her and said, "How could I not be all right?"

           

   Thank you so very much! You folks may think these kindnesses are little when you do them, but, they really keep us going and seem to hit at the perfect moments. A couple of other families had purchased a few toys, a bowling gift card, superhero towels and homemade cookies for the boys. A mom and 2 young girls in 6th grade representing the families talked with the boys and played with what they brought. The boys were thrilled and the girls were so sweet. We all learned how to play Bakugan together. Ben and James have already talked about how they could play with them if Ben has to be in the hospital again. James' seems to be thinking about ways he can bolster his brothers' spirits if he has to. Our boys are learning wonderful things from the love and support this most amazing community of friends and family we have been blessed to find ourselves amongst. If I reread this I wll surely delete most of it because it is late and it is most likely really sappy. So here is my heart on my shirt sleeve and this is only the tip of the iceberg for the past few days.

         

   Thank you! Thank you! Thank you!

4/24/2008 Part 1

  We are on our way to Albany Med this morning. Ben will be undergoing the radiation treatment simulation and getting a planning CT scan. They managed to fit him into the schedule. They want to get him started on the treatments on Monday if possible. They will be making a "cast" for him to lay in during the treatments. It will hold him very still. They will also be marking him to make sure they are hitting the same areas each time. He will be laying in the machine and it will move around him taking normal x-rays instead of doing the treatment. They will be able to look at the x-rays to know they are hitting the right areas. It is pretty extensive and he will be getting the treatments everyday Monday through Friday for at least 6 weeks. They explained to us some of the symptoms he could experience. So today is radiation planning day.

4/22/2008

   Ben is doing great. He went to school yesterday. Today we went to the see Dr Weber the nice surgeon who performed the bilateral thoracotomy. Dr Weber gave him permission to go on the Tilt-A-Whirl at Hoffman's. The incisions are healing nicely. After meeting with Dr Weber we went to see Dr Pearce.

  Ben will be starting raciation therapy as soon as possible. We have a meeting scheduled tomorrow with Dr Gibbons. She is a radiological oncologist. Dr Pearce thinks we will be able to start the radiation therapy with a radiological sensitizing drug next week. The sensitizing agent acts on any tumour cells to make them more sensitive to the radiation. Ben will most likely be getting radiation everyday for 3 weeks. It will be oputpatient, but, the timing may interupt school. We also are not sure how Ben will tolerate it. There are a wide range of side effects that he could experience. Everything from tiredness, nausea, lack of appetite and a few others. My personal favorite is that one of the long term side effects, although rare, could be osteosarcoma. It is low grade osteosarcoma and usually easily operable. Ben currently has Stage IVB osteosarcoma since it has metasticized to a lymph node and his lungs.

          

  Ben will also be starting on an inhaled chemotherapy to attack any microscopic metastises that may exist in his lungs. He will be receiving it at home. He will get it 5 days a week every other week. After the radiation is over he will get a systemic chemotherapy treatment. We are still discussing this and are finalizing the details.

4/18/2008

   Ben is doing really well today. He is being Ben. He and James are having a typical day. They have bickered a little here and there - we call it brotherly banter. Ben asked if he could play on the computer this morning. The Starlight Starbright Foundation is having an outing to Hoffman's Playland today. I think I may go home from work and surprise the boys and take them to Hoffman's. We didn't RSVP to the event, but, that's ok I'll buy a book of tickets. It looks like it is beautiful outside and they love Hollman's. We didn't RSVP because we didn't know how Ben would be and also we are waiting to hear from Ben's doctor about planning the next steps. Stacey has a feeling she is going to ask us to come down to the clinic on Monday instead of today.

    

   I am having a really tough day. I can't concentrate on anything and I am an emotional wreck. I called Stacey to see if the doctor called yet and she said no. Stacey told me that yesterday was her down day so today could be mine. One of the blessings in this whole thing has been that Stacey and I have never hit bottom at the same time. She then pointed something out to me. I always have a tough time when there is no plan. I had a tough time when we fell off schedule or Ben couldn't receive his chemo because of neutropenia. She is right. I am a basket case today because we aren't attacking this evil alien. The surgery is over and that is great. Ben is healing wonderfully from the surgeries. He still has tape on his body, but, a couple of showers should take care of that. I need to know that we have a plan for the next step in order to be able to think about anything else. What I really need to do is follow Benjamin's and James' lead and live in the moment.

     

   We have some wonderful things to look forward to: Little League practice is tomorrow and the first game is on 4/26, The ACS Relay is tomorrow and Ben is looking forward to it, Church on Sunday. The folks from Make-A-Wis called and they have finalized Ben's wish. They said there are still a couple of small details to work out, but, everything is a go. We just have to figure out the exact dates. They are coming to the house on Monday at 4pm to tell Ben about it.

4/17/2008

 

    A few weeks ago, just before we knew that the osteosarcoma was back Ben and I went to a River Rats hockey game. That night the American Cancer Society was there conducting a colorectal cancer awareness campaign. Ben wanted to go talk to them just after the 1st period. I said ok and we went to their tables. He played a polyp removal game that they had on display and they gave him a comic book and a roll of toilet paper as prizes. He looked through the comic book and actually asked me about colorectal cancer. I echoed what they had said at the table and that it was an adult cancer and it usually only affected people over 50. He decided he wanted to go back and thank them for helping fight cancer. Just as the 3rd period started we went back to the table. Their was a lovely woman manning a free raffle give away as part of the presentation. He asked if he could enter and I said sure. As put his name on the piece of paper and handed it to the nice lady. As he handed it to her he thanked her and told her that he was a cancer survivor and promised to tell adults that they needed to get screened for "Coolorektle cancer." She thanked him and gave him a blue buddy bracelet that was intended to be given to adults to remind them that they needed to get screened. He thanked her and repeated his promise. A few days later we received a phone call from the American Cancer Society. It seems that he won a prize, but, the only thing he put on the paper was "Ben S." and our phone number. They needed our address. A couple of days later a package arrived with at least 10 more bracelets and the same number of pins with a note thanking him again for helping to spread awareness. He had been deputized. There was also a teddy bear for him and a nice note congratulating him on being a survivor. He has been asking people if they are over 50 and if they say yes he asks if they have been screened. He has asked our minister, his oncologist, his surgeon, a few of his teachers and family. Those are just the ones I have witnessed. You may be next so be prepared.

       

    I had heard that Siena College was having a Relay for Life event on April 19 - 20th. I told him about it and he asked if he could do it with me. I told him it was a 12 hour walk, but, if he really wanted to I would bring him for the survivor lap that they kick it off with. He told me he wanted to do it. All of this was before we knew the osteosarcoma was back. I quietly entered him for the event. We were originally thinking of forming a team, but, when the scans came back there was just no way for us to pull it together. A few people found out about it and we have been receiving emails about it from some of you. People have been making donations in his name. It surprises me when news moves quietly around and then comes back to us. If any of you want to come to the event Ben will be there for the Survivor Lap and kick off at 7:00 PM on Saturday 4/19. I think they have decided to honor him in some way, but, I don't know the details. They have been very supportive of us this time around and offered us help. We wish they did more for sarcoma and other smaller cancers, but, any organization fighting these diseases is a good one. Don't be surprised if Ben asks you about "Cooloreektle cancer."

        

    If you want to make a donation in his honor for the ACS Relay for Life event you can do so at the following web site - http://relay.acsevents.org/site/TR/RelayForLife/RelayForLifeEasternDivision?fr_id=8093&pg=entry

4/16/2008

   Last night was the first night I slept in a bed and I didn't realize until this morning how little sleep I had gotten over the past week. I don't remember hearing the alarm and I missed a conference call at work. It felt good to be at work. The new normal hasn't started yet.

      

   Ben is doing really well. He convinced his mother to let him ride his bike today. They were going to go for a walk, but, he really wanted to ride. The bikes have been in the garage all winter so one of his tires was flat. Stacey called me at work to ask about our bicycle pump. I walked her through using, but, she had already tried it correctly. It must be broken. When they were leaving our neighbour Joe was thrilled to see Ben and offered to fix his tire. So just over a week after a bilateral thoracotomy Ben went for a bike ride. Now that's one lazy child.

  

   He is peeing great, but, still working on the pooping. I think we will have to follow the advice of both of his grandmothers and get him some Activia.

          

 

4/15/2008

    Ben is being discharged. I just received a call from Stacey and I am on my way back to the hospital to pick them up and bring them home.

4/15/2008

  Happy Birthday Stacey!! Happy Brithday Mommy!!  Ben urinated this morning. I don't think I have ever been happier to see someone pee. He received an enima last night and pooped a little bit. So we do know things are working. This morning the PICU intern said that his bowels sund good and that things are starting to move. Thank you all for your prayers and support. We have read your emails and guestbook entries to him and the encouragement and support works wonders. You helped us remind him that the opinion of one doctor, who doesn't know him, about Ben's effort does not matter and that the people who know him best believe in him.

4/14/2008

   Ben has been doing really well today. All of his hard work has paid off. The pneumonia scare appears to be reolved. The surgical residents came in this morning to see him. He was sleeping. They looked him over and told me that his lungs look better and they wanted to take the chest tube out later in the day. The news was excellent and Ben proved the Dr who had been ruda and inappropriate the day before incredibly wrong. I asked the resident if the doctor would be in and he said that the docotor was expected to be in around noontime.  I thanked them and they left Ben's room. After they had been gone for few minutes I found them in the hallway and gently asked if they would stop back in Ben's room before they left the floor.  

    

   I want to make something clear here. The doctor who treated Ben badly was not one of the doctors we have talked about previously on this site. It is a teaching hospital and there are attending physicians who oversee the residents. The surgeon who performed Ben's surgery was not available so another doctor is who has been overseeing the surgical residents during the last few days of Ben's stay. We love the surgeon who performed Ben's surgery and this problem doctor is not him.

         

  The residents returned to Ben's room and he was sound asleep. As been lay there I glanced over to make sure he was sleeping deeply. I stood and looked the primary resident straight in the eye and said, "The comments that were made to Benjamin yesterday by the doctor were incredibly inappropriate. No 7 year old patient, let alone a 17 year old should be spoken to in the way that the doctor spoke to him. I have watched this little boy fight a cancerous monster since September of 2006 and he has never questioned his survival. He has been positive and experienced greater pain than I can imagine. Through all of it he has known without doubt that this was something he would get through with the support of his family and doctors. Yesterday for the first time I saw my child question the outcome. Benjamin's brother is on an adventure to NYC with his great aunt and for the first time my wife and I were plannning on spending a whole day in the hospital together with Benjamin. Benjamin asked me several times, 'When are you going to leave daddy? You usually do the night shifts and Mommy does the day shifts." In one of them he said quietly so only I could hear, 'Am I going to be ok?' I had to leave because the presence of both of his parents was making him think he was not going to be ok. You are both going to be fine surgeons, but no patient should be talked to the way Benjamin was spoken to yesterday. Please do me a favor and when you come back later to take out his chest tube be extra positive. Tell him he is not lazy and recognize how hard he has worked and how well he is doing." I swear as I was talking the primary surgical resident had an "Aha!!" moment. As if on cue Ben woke up. The resident immediately told Ben that everything was all right and that they had reviewed his x-rays and that his hard work had paid off. He didn't aknowledge the comments that the doctor had made the day before, but, he tried very hard to make sure that Ben understaood that Ben was brave, strong and har worker. He did the right thing.

                  

  At noontime we were scheduled to go see Dr Pearce. We wanted to make sure that Dr "%$#!"  would not be alone with Ben or able to speak with him without our presence so I approached our nurse as Stacey approached the doctor who is the head of the PICU. As I was asking the nurse she smiled at me and said, "Don't worry I heard about the whole story and he will not get into Ben's room." The look on her face was one of such resolutness that I knew she would not let it happen. The head of the PICU tols Stacey that he had indeed heard about the interchange that happened the day before and that we shouldn't worry he would make sure the doctor did not interact with Ben. He commented that he thought the doctor had spoken to me that way, not Benjamin. He also said something to the effect that the offending doctor was in rare from even for him.

        

  We went to see Dr Pearce and told her of the interchange. She was visibly upset that Benjamin's confidence had been shaken. She explained without making excuses for Dr "%$#!" that he was indeed a brilliant surgeon and that she would let him operate on here in heart beat. She also pointed out that his bedside manner could be better. I told her of my talk with the residents and the reaction and reassuring interaction with Ben. She thanked us for our using the opportunity to educate the residents. I am not doing her reaction justice in this paragraph, but, it was what we consider to be perfect. The look on her face was one that made me think her reaction was one of, "Oh God, what has this doctor done to my Benjamin." We told her that we intended to file a complaint with the hospital - something we will take care of tomorrow. We also talked about the next steps in Ben's treatments and we do have a plan that is coming into focus. She will be talking with the folks at St Judes and we will have a final plan to discuss on Friday.

           

   We went back upstairs and the doctor had not come back. Around 1 or 2 the residents showed up and they removed Ben's second chest tube. They also removed the bandages from his first chest tube and checked it out. They bandaged the place where the 2nd chest tube had been and checked the incisions. Everything looks great. Throughout it they were incredibly positive with Benjamin and handled him perfectly. I know previously I have said that this primary resident came across a little pompous and not quite able to identify with the patient. As he worked on Benjamin I noticed he hid the scissors from Ben's view. I noticed he talked to him with a a few more positive adjectives than he had in previous interchanges. Maybe even a little more relaxed. I couldn't put my finger on it, but, he was different. I truly believe he and the other surgical resident will be excellent surgeons.

     

  Around 3 o'clock Dr "%$#!" and the surgical residents came in and talked to us. The doctor told us that Benjamin had done nicely in bouncing back from the pneumonia threat. He was very clinical and mostly adressed me. In fact he came in and started so quickly that Stacey wasn't sure who he was at first. She stood up and said, "And you are?" After he was done she asked if he would step outside the rooom so she could talk to him. As she started questioning him about the interchange with Ben the nurse stepped in and started talking to Ben, slightly louder than normal, and encouraged him to pee. She also talked about listening to his lungs and did an assessment the whole time talking about it and keeping hi engaged. I was paying attention to Ben to see if he was listening to his mom and the doctor or focusing on the nurse. I was also listening to see if Stacey needed me in the hall with the doctor. She was handling the doctor masterfully. She asked him what he thought he was accomplishing by scaring a 7 year old. She reiterated that no 7 year old should be spoken to in that way and that it was inappropriate for him to chastise a small child and call them lazy. She asked what service it was to a pediatric patient telling them they would be intibated and put on a ventillator. His initial response was to start reciting his Curriculum Vitae (resume) and she said, "I understand that you are an excellent,skilled and well qualified surgeon. I am questioning why you think it is appropriate to scare a 7 year old and cause him to confront his mortality at 6 AM in the morning." I could hear the stress in her voice, but, I could also hear her anger and love. She was not just confronting him for Ben's sake. I could tell she was thinking that what was done with Ben was done she needed to keep it from happening to another child. Stacey can be very eloquent and is great at choosing the perfect wording when in a confrontation and she was masterful. When she was done the nurse who had also been listening as she intentionally distracted Ben walked up to her and quietly said, "Well done. Thank you." Although it made Stacey feel better she said that she doesn't think he gets it. He was defensive and kept returning to his surgical prowess which she wasn't questioning. I have met and know many brilliant people. Sometimes brilliance isn't enough. We would let this man operate on Benjamin in a heart beat. We respect and have complete confidence in his surgical abilities. We just will never let him in the room alone with Ben and will always be ready in a heartbeat to interupt and escort him from the room. Stacey told him that under no circumstances is he to ever talk about Ben's prognosis, medical treatments or condition directly with Ben. He may ask questions and speak of generalities with Ben, but, that is all.

    

  As far as Ben goes, He is back. His color is great. His attitude is one of confidence and cure. He does have some residual stuff in his lungs, but, it is working itself out. He is not in pain and he is active and walking around. Tomorrow he will be either moved to the pediatric floor D7 or discharged completely. The concern has been shifted to getting him to pee and poo.

4/13/2008 Part 2

  I looked all over the area for a Bakugon ball for Ben. It is a new cartoon that he is interested in and is like a cross between Pokemon and Yu-Gi-O or something like that. Apparently the toys are very hard to find. I couldn't find what he was looking for, but, I did find 3 crying kids. I also found a friend of ours at Target. She was shopping with her family. Her boys went off in the store with their father and she talked with me in the aisle about our day. I really needed that conversation to get my head back in the game. It is so wonderful that when I really needed someone they were there to listen and give me the strength I needed. Thank you.

        

  I called Stacey to see how Ben was doing and she told me he was sleeping in the chair and that he had to be catheterized to let him pee. She asked if I had found the Bakugon toys and I told her no, but, that I had bought the juicy juice for Ben and some goldfish crackers. I arrived at the hospital just before 8:30 PM. SHe told ne how Ben had walked the entire hall 3 more times after I left. That is 7 times total for the day by our count. He tried so hard to pee. They tried putting his hands in warm water, running water, putting pressure on his bladder. She said at one point he was standing with his hands in warm water telling her to push harder and harder on his bladder. He ended up being "straight line cathetered" to drain his bladder.

  

  I helped him stand to get into bed and he was still sleeping as he stood. He was crying in his sleep and saying over and over in whiny crying voice, "I can't get into bed....I'm lazy." We got him into bed and he finally woke up. We got him situated and he drank some more fluid. We had him try to pee again for a little while and then we did chest PT on him for at least the 4th time for the day. This time we used an automatic machine that is basically about the size of one of those Cambell's soups single serve micrwavable soup cans. It is powered by air and thumps against the back like a macabre jack hammer massager. He hit away on his morphene pump button while I held him and the nurse gradually moved it around his back increasing the speed of it's thumping. Stacey tried to get him to hug a pillow as we all encouraged him to cough for us. He endured this for almost 10 minutes. It is 11 PM right now and he is sound asleep. He was vertical either sitting, standing or walking for about 13 hours by our estimate. This kid is not lazy. His respirations are averaging about14 breaths per minute and his O2 saturation level is averaging 97%. His entire chest is visibly raising and lowering. His nurse tells me that his lungs sound clear to her. At midnight we are going to wake him again to give him a pill, try to get him to pee and do more chest PT.

    

   Between all of your prayers and Ben's hard work he will lick this and make that doctor eat his words.

4/13/2008 Part 1

   We finally had our first truly negative experience with a doctor. The doctor is not one of Ben's regular doctors. He is the attending surgical doctor and leads the residents. The surgeon who performed Ben's surgery was not available.

         

  Today at 5 am Ben had a chest x-ray. At 6 AM the primary surgical resident and the attending surgeon came into Ben's room. I had drifted back to sleep so I was awakened by them coming into the room. The attending surgeon proceeded to tell me that there was a problem. That Ben had started to develop a pneumonia in his left lung. He proceeded to tell us that this was because Ben had not been working hard enough. That I as his father had not been pushing Benjamin hard enough. He told Ben that his parents were being to nice to him and letting him stay in bed. He then turned to me and said that "this was day 5 for the epidural and that it had to come out today." He also told us that the catheter had to come out today as well. He said like we had been keeping it in Ben. He then turned to Ben and told him that if he didn't work hard today that the pneumonia would get worse and could lead to a major infection of his chest. That he would be placed on a ventilator and "You don't want that to happen." I was dumbfounded. I should have pulled the doctor out of the room. I was still a little groggy and part of me thought I was dreaming. I cannot believe that this surgeon dressed down a 7 year old and told him he was going to be put on a ventilator. I cannot believe that he told a 7 year old that his father and mother were not working hard enough to make him get better. He had already said the things to Ben before I could say anything and I couldn't think of anything to say that wouldn't make the situation worse.

        

   We have been doing everything we have been told or asked to do since September of 2006. Ben has been sitting up for the last 2 days during the day. We have been telling the staff that once we can get Ben up and walking about he would fly and get better almost immediately based on our previous experience. It is the surgical residents and attendings who have been telling us to keep the epidural in. It is the surgical residents and staff who have been delaying the removal of the chest tubes. We don't know anything about when they should or shouldn't be removed. We have been getting Ben to do the exercises with spyrometer every hour.

     

   James is staying with his Aunt Carol for some fun until Tuesday so Stacey and I had today to stay in the hospital together with Ben. As you all know we usually aren't both ther for more than an hour or so. Either I have to go to work or take care of James. We can only keep James there for so long. After a few hours of the 3 of us being there ben said to me, "Daddy when are you leaving? Mommy usually does the day shift." I told him that this was a rare opportunity and that mommy and I thought it would be nice for all of us to be together. I walked with him up and down the halls a few times. Ben asked me 3 or 4 times about why I was still there and all of a sudden I realized, he thought my being there was a bad thing and that it meant something was really wrong with him. Needless to say I left him with his mother and a couple of visitors. I can't have my presence shake his confidence that he is a survivor.

   Ben has not peed since the catheter was withdrawn this morning and he has not pooped since the operation - something we have been pointing out to the surgical resident every day. So we are praying for pee, poop and expanding lungs.

4/12/2008 Part 2

  I just spoke with Stacey. My sister was visiting with Ben while Stacey was talking with me. I went home for nap time. It appears that while I was fitfully napping Ben took a nice nap. He bounces back much quicker than I can ever imagine that I would. I am looking at this kid and thinking he isn't his usual self and start to get a little bummed inside. Then a little voice in my brain shouts, "Hey stupid, wake up!! The kid just had his chest opened up on BOTH sides, had his lungs squeezed, hoses added and then been all stitched up. Not to mention the major operation he had to remove the grapefruit sized tumour under his armpit 10 days before this one." I then look at him with shear amazement. I'd still be saying, "You want to do what to me? When?"


Stacey said the throwing up had stopped and that Ben was doing well. It appears that they figured out the Zofran dosage to ease his tummy troubles. Ben was smiling and had gotten out of bed to sit in the chair for a while.

         

   If Ben's chest x-ray is good tomorrow and shows a minimal amount of air in his chest cavity (outside his lungs) the remaining chest tube will be removed. Ben is a little nervous about this. As I updated previously the epidural has to come out tomorrow. After those are removed we will either be discharged from PICU which woud mean going home. If there are any concerns or Ben feels pain we will probably stay for another day, but, he will be moved to the regular Pediatric Floor - D7 North. The nurses from D7 and the clinic have been coming to visit Ben in the PICU.

      

  Ben usually sleeps more and gets cranky when he is going through a growth spurt. I swear he has actually been growing the last couple of days. A growth spurt coupled with the surgery would definitely make things interesting.

       

   Stacey and I wanted to throw out an idea to you all that we had been considering before the relapse. Ben absolutely loved his experience at Double H Hole in the Woods camp last summer and we enjoyed the family weekend in the fall. Every year between now and sometime in May they have work party weekends to get the camp ready for the program. I asked them about the possibility of us putting together a work party to paint, put up curtains, clean, etc. They loved the idea. They have 2 weekends scheduled, but, would give us our own weekend if we put together a team of at least 6 adults. It is in Lake Luzerne and we would go up for the day on a Saturday and work from around 10am until around 3 pm with a break for lunch. If anyone is interested please send us an email with your contact information to greendrakkoman@hotmail.com.

4/12/2008 Part 1

  Ben and I woke up at 5 AM this morning so he could get his chest x-ray. The chest x-ray tells us how his lungs are doing and whether or not the remaining chest tube can be removed. Just after finishing the x-ray Benjamin became ill. He threw up. He has thrown up 4 more times since then and his eyes have circles around them. The little guys is very tired although he slept well last night. We don't know why he is throwing up and they have given him additional nausea meds. He isn't complaining of feeling sick between throwing up. 

        

  His pupils are still uneven and I had the sides reversed. His left eye is tiny and his right eye is larger/normal. His epidural has to come out tomorrow no matter what. The anesthesia docs don't like to keep them in more than 3 days and we are pushing the envelope. It is possible that that is the reason for the uneven pupil size and also the vomiting. He hasn't had a bowl movement since the surgery so he has started on medication for that too. Between the medicine and the lack of bowl movement they think that is what is causing the vomiting bouts.

       

  He is in a good mood considering everything that is going on today.

        

  When I was doing this update I accidentally put the entire page in Boldtype. As I was fixing the site I reread the July posting from 2007. Most of you don't know this, but, I rarely reread what I have written here. That should explain the bad grammar, spelling mistakes and typos. I wanted to repost it today. I had a great deal of trouble unbolding it so perhaps this is what I need to do.

         

--------------------------------------------------

                  

  Today is the 1st of July. I was just sitting in Ben's room and watched as a beautiful young woman walked past his room. I didn't see her come onto the floor. She looked like she had just started her day, maybe she went for a quick run and came to visit someone. She may have several errands to run and she had most likely stayed longer than she thought she would. As she was heading rapidly toward the double doors to leave I saw something special in her countenance. She appeared strong and vulnerable at the same time. She was wiping away a single tear with a simple gesture. Her face showed love and concern, not grief. It was what I have decided to call a warriors tear. They are not tears of grief or fear. They are tears of strength and compassion. They are tears of love. I do not know who she was visiting or why. I do know she loves and is loved. I do know the source of her tear.

4/11/2008

  Today was a good day for Ben. One of the chest tubes is out and his spirits are high. He enjoyed the visitors and it was good exercise for his lungs to talk with them. He worked on a song with the music therapist and we recorded part of it. I will try to put it up on the site tomorrow. We do have one concern. The pupils of his eyes are different sizes. The left is tiny and the right is larger. He had a CAT scan of his brain and there doesn't seem to be anything wrong. We aren't seeing any other symptoms that would lead us to believe that he is having a neurological event. The neurologists at the hospital do not know what is causing it. The concensus of opinion seems to be that it is being caused by one of the pain drugs.Of course we are a little concerned, but, he is still acting like Ben so we are confident it is a minor issue. Believe me we are watching hi like a hawk and so are his nurses. The second chest tube should be out tomorrow and then he might be ready to go home sometime on Sunday. We are in no rush becase it is not good to pull the chest tubes prematurely.

4/10/2008

   Yesterday  morning Dr Pearce came to visit Benjamin. Our stoic little Ben was finally truthful with someone about the pain he was enduring. Stacey and I knew he was in more pain than he was telling us and we were telling the pain management folks that he was in more pain than he was telling them. After the meeting with Dr Pearce she met with Dr Weber (Ben's surgeon),the head of the PICU and the head of the pain management team. The 4 of them changed Ben's pain management plan and we saw a rapid improvement in Ben. Last night we were going to give Ben something to help him sleep. I was talking with the nurse about the choices for sleep aids when Ben fell asleep. She pointed out that it would be silly to wake him up to give him a sleeping pill. We decided to wait and give it to him when he woke up. He didn't wake up until almost 7 AM. H slept well. Obviousely the adjustments to the pain management he was receiving made a big difference.

         

   I went to work from the hospital and promised to bring him a chocolate milkshake when I had a break around lunchtime. I arrived at the hospital with a shake in hand and was told they were about to get him out of bed to sit in a chair for a while. Needless to say I stayed to help and see him sitting up. The nurse, Stacey and I helped him get into the chair. It wasn't easy for him. There was some pain and a few tears, but, he did it. He is up for visitors - the talking does him good. The PICU isn't a great place for kids to visit so adults only and be prepared to leave if asked. He is looking forward to pizza tonight from the Fountain.

         

  The suction on hischest tubes was turned off thismorning and they were thinking of trying to take one of them out this afternoon, but, I haven't heard from Stacey that they did. I will update when it happens. They will do the chest tubes one at a time because there is a risk that the lung can collapse when the tube is withdrawn and afterwards if there is an air leak. I saw him smile several times today and he tried to play a joke on the nurse before we got him out of bed. He had me stuff his hospital issued slipper sock with a couple of wash clothes to make it look like a foot and place it so it was sticking out of the covers where his left foot should have been. His right foot was already sticking out. It looked pretty good. He called his nurse in and told here he couldn't feel his left foot. He did have a bit of a smile on, but, she didn't suspect a thing. Unfortunately, instead of grabbing his foot she lifted the blanket and saw the ruse. She did pick up the slipper sock and say, "What's this?" with a big smile on her face. We all laughed a little. Nice try Ben. Ben is back. I said to her, "At least he didn't have the fart machine with him...Yet."

4/9/2008

  As I stated in my very short post yesterday, the surgery went very well. The doctors went into the surgery thinking that there were 2 tumours in Ben's lungs - one in each lobe. They expected to find as many as 4-5 smaller tumours in each lung when the felt the lungs with their hands. Instead they only found 1 tumour on his right lobe and no others. The tumour Dr Weber found was, "barely connected to the surface of his lungs and was easily removed." It appeared to be encapsulated and was considered "small, only 1/2" in diameter." That seemed huge to me, but, I am Ben's father not his surgeon. The surgeon told us that Ben would continue to be scanned regularly and that we could expect that more might appear. He nonchalantly said, "We will just keep going back in until they stop returning." He told us in the office that he would keep doing whatever he had to do to work toward a cure for Benjamin.  Dr DeCaprio, Dr Pearce, Dr Weber and all of the other doctors on the Green Drakkoman's team have all expressed to us that they will do whatever it takes. We are in good hands and with all of you praying and supporting us we realize how blessed we are.

     

4/8/2008

  Ben is out of surgery. Everything went really well. The surgeon talked with us and the nodule on his right lung was on the edge of the lung and easily removed. The nodule on the left lung turned out to be an artifact. They did a thorough search of his lungs and only the 1 nodule was found and removed. Thank you for all your prayers, good wishes, lite candles and spells. It is working.

4/7/2008 Part 3

  I had a meeting at church tonight of a committee I chair. One of the women on the committee is someone I knew when we were around the boys age. She has 2 lovely daughters that are close in age to Ben and James. After the meeting they said they had a question for me. The oldest who I think is 9 asked if she and her younger sister who is 4 or 5 could give me hugs to bring back to Ben before his surgery. Of course I said yes. I got down on my knees and they gave me 2 of the best hugs I have ever felt. When I arrived home the first thing I did was give Ben those precious hugs. I hope I did them justice.

   

  There is a new story of the Green Drakkoman on the Green Drakkoman page (the link just says Green).

4/7/2008 Part 2

  Our green Isuzu Rodeo that had served us well this past year has lost it's engine. The cost to fix it is just too great. We have decided to donate it to the Songs of Love Foundation's "Donate a Car" program. Carl Alloco through Songs of Love wrote and recorded that wonderful song for Benjamin that is on the Home page of this site. It is only fitting that the car be used for a charitable act. As many of you may recall the car was given to us by our friends Kay and Bill last year when we needed a vehicle. They were afraid when they gave it to us that it would only last a few days. It served us well and we are very grateful for their loving act.

        

  I also wanted to say thank you to the folks that work with Ms Kathy. They have sent some wonderful gifts to the boys over the past week. Their favorite item was the big box of candy and I do mean big. The boys are still working on it and a couple of grown ups have even been helping. The teachers, parents and students at Blue Creek and our church are circling the wagons around us. I have heard stories from other families about how the siblings of patients often feel left out. It is a testament to you all that we get almost as many queries about James as we do Ben. 

                       

   We have been receiving and incredible outpouring of support and I know that many of you are chomping at the bit to dig in and help us with whatever we need. We have really appreciated the gift cards that we have received - we've already used up the Friendly's ones - and the other gifts for the boys. Right now the biggest thing we need is what you are already giving us - your love and support.

       

  All I can say is Thank you, Thank you, Thank you!

   

  Our focus today is on the surgery tomorrow after that we will know more about our long term strategy. Ben's surgery will be starting at 11:30 AM tomorrow. I will try to get an update on here as soon as possible after he comes out of the OR. It is expected that the surgery itself will only take 2 hours, but, there will be additional time in the surgical recovery room. After that Ben will be in the PICU which is a standard post operative practice. The doctors have told us to expect Ben to be in the hospital for 5-7 days after the surgery. If you recall last time they told us 3-5 days and after surgery on Thursday Ben was home on Saturday before dinner. He likes to get out of the hospital as quickly as possible. The thoracotomy is a much more invasive surgery though so we expect their estimates to be pretty close.

4/7/2008 Part 1

   I am sitting here waiting for a tow truck to come to take our Isuzu to a garage that a friend of ours recommends. It has been sitting in front of our house since we were towed home (the last 70 miles) from our Easter trip to my mother-in-laws. We don't know what's wrong with it, but, it made a horrible clinking sound tha last time I tried to start it. It is a beautiful day and I am telecommuting to work. I have the window open so I can hear the truck pull up. I am listening to birds singing. I am reminded of the other day when I pulled into the driveway and there were 3 robins on the lawn. Earlier today after the boys were at school we looked out into the backyard and there was a lone turkey. Our dog, Mocha, was going berserk as she was looking out our sliding glass door at the turkey. I can also see that the buds in the trees around our house are opening. It is just such a great spring day. I am tempted to run to the boys school and take them out for the day. I am not sure what we would do and I would imagine they would get bored rapidly with just sitting still quietly enjoying spring. I will play catch with them after school and get them to hit a little. Baseball seaason is starting andI am coaching their Little League team again. Our team is going to be great this year. We have a fantastic group of kids and parents. Ben is absolutely thrilled to be on the team. I don't know what the year will bring for him, but, I know he will be participating in every way he can.

           

  Tomorrow is surgery day.

4/5/2008

   Today when I checked the drain from the surgery to remove the tumor in his lymph gland under his right armpit the incision was starting to look red and irritated. So we called the doctors emergency number and Dr Weber was on call. I spoke with him and he agreed that it sounded like it needed to come out now and couldn't wait until the surgery. The drain had pretty much stopped producing fluid.  Ben and I went to Dr Weber's clinic at the hospital. We met him there and had to wait a couple of minutes until he arrived with the keys to let us in. Ben was a little nervous and scared about having it removed. Dr Weber was kind and gentle and explained that he was just going to cut the single stitch holding the drain in and then pull it out. We gave Ben 2 choices: he could sit up and I would hold his arm out of the way or he could lay down. Ben's thoughtful reply was, "I think I'll choose... standing up and running away!" He couldn't do anything because I was standing right in front of him, but, I think he would have taken off if he could have. We explained to him that although we respected that decision it wasn't one of the choices. He agreed to sit up and held his arm in the perfect position for Dr Weber to remove the drain, at least that is what the doctor told me. He told Ben exactly what he was doing and Ben watched as he carefully snipped the stitch. I had never seen what is inside the body from one of these drains. I think Ben and I pictured something maybe an inch long under the skin. As the doctor started pulling Ben's eyes became as big as saucers and tears started flowing. When the doctor got to 2 inches Ben turned to look at me and I think my eyes were as big as saucers. Ben buried his head in my chest and just sobbed. I held his right arm motionless with my laft arm and held his head against my chest with his right as the doctor finished pulling the drain out of the tiny incision. The drain inside Ben was about 6 inches long. The doctor did it rapidly, smoothly with as much tenderness as possible. After it was out he covered it with gauze. As he was covering it he asked Ben about the level of pain. Ben said with chagrin, "It's 100%" After it was covered and the doctor had given us instructions about changing the bandage he asked Ben, who had stopped crying, again about the pain. Ben replied, "About 98%." By the time we had his shirt back on and we were in the hall to head for home he was telling the doctor and I that the pain was gone and that, "It's pretty amazing the pain went away so quickly."

         

  On the ride home he told me that it was just like the dream he had last night. I asked him about the dream and he said that he had a dream last night that he was going to the hospital today and it was going to hurt, but, the pain would go away real fast. He also said, "It came true just like the time I had the dream about my cancer coming back." I asked him if he had that dream the night before he told some of his friends that the cancer was back. He said no, he thought it was back that time because he fell out of bed. The night he had the dream about the cancer coming back was "the night before the scans that said my cancer was back." I asked him why he didn't tell us about the dream and he said he didn't want to make us worry.

   

4/4/2008

  Ben went to school today. He was so excited. Both he and James are looking forward to their spelling tests today. They have worked hard this week learning their words. I hope they do well. I stopped in the school when I dropped them off. I talked briefly to Ben's PE teacher. The doctor had told us that Ben should not participate in PE or recess. We agree with recess, but, Ben loves PE so he will be going to class. He will still go to PE, but, that is because we totally trust his PE teacher and he adapts the Ben's participation to protect him while still allowing him to participate. Today they are doing a baseball game that usually entails the coach counting down and yelling swing. Ben will be doing the countdown and will be hitting a tambourine. I am sure he will love it.

            

  We met with surgeon yesterday, Dr Weber, who will be doing Ben's surgery next week. We probably won't know the exact time of the surgery until Monday. The surgery will be taking place on Tuesday unless soem emergency type situation needs the OR and then it would be moved to Wednesday. Ben will be undergoing a Simultaneous Bilateral Thoracotomy. The actual surgery should take about 2 hours. We have been told to expect a minimum of 5 to 7 days in the hospital after the surgery with most of them being in the PICU. AMC is aware that Ben feels more comfortable on the regular pediatric unit so they will probably move him there as soon as it can be safely done. The surgery involves opening up both sides of his chest to gain access to his lungs, removing the nodules, feeling his lungs for additional nodules and removing any additional nodules found. The doctors have told us not to be surprised if there are 4 or 5 additional nodules found.

        

  After the surgery is over and he has recovered he will be starting chemotherapy and radiation. The radiation will be focused on his lymph glands. It is extremely rare for osteosarcoma to metastisize to the lymph glands. So Ben has gone from being medium rare to rare. We are still working with Dr Pearce and other doctors to develop the best plan for Ben. We are getting input from an amazing group of people which includes sarcoma specialists from across the country and the parents of kids who are or have fought this exact battle.

      

A friend ours sent Ben an email letting him know that 2 of her relatives have had this same surgery for a different type of cancer. Both of them recovered nicely from the surgery and they were in their 80s when they had it.

       

   We find ourselves on a very good rock to be on in this stream.

4/2/2008

  We met with Dr Pearce today and discussed the next steps for Ben's treatment. We were armed with information from the ACOR osteosarcoma email list and other sources I was able to find. She was amazed that we were not surprised by the treatments and drugs she was describing. It is wonderful to have her on Ben's Team. She has been conferring with doctors around the country about Ben. She is still waiting to hear from a couple of them. We are confident that we are in good hands. 

                                            

  The big news is that Ben is going to have a thoracotomy next week to remove the 2 nodules in his lungs. We will be meeting with the surgeon tomorrow morning at 10:30 AM to discuss the particulars of the procedure. The basics are that his chest will opened up and the doctor will remove both nodules. There is 1 nodule in each of Ben's lungs. After the nodules are removed the doctor will feel the lungs with his hands and remove and additional nodules that he feels. It is a major surgery and as I am typing this the enormity of it is hitting me. As I was typing this paragraph my sister is calling.

          

   I just finished talking with my sister on the phone. Yesterday she was driving on the highway returning from a meeting 2 hours away fom home. As she was driving at 65 mph she suddenly heard a horrendous noise coming from her car. It sounded like it was coming from her engine compartment. She pulled into a rest area and ended up looking under her car. It seems that the skid plate under her car had bent back and was scraping on the ground. She said she was very upset and on the verge of tears as she thought, "Just what I needed now." As she started to get upset the image of Ben came to her mind and she started to laugh at herself. She thought, "My god, if Ben can be going through what he is going through and still be positive why am I getting upset about such a stupid thing as this."

        

  Ben is going to be going to school as much as possible until the surgery. James is doing well although I do think he is starting to feel the stress.

4/1/2008

   First let me tell you that nothing in this update will be an April Fool's joke. I am writing this update while we are at Gilda's Club. Ben and James are both herre attending Noogieland. Ben is doing really well and in fact if you didn't notice that he still has his surgical drain in place you would think he was just another kid playing. Just Ben being Ben.

     

  Tomorrow morning at 10 AM we will be meeting with Dr Pearce to discuss the next steps. Stacey and I have been researching different alternatives on our own and we are looking forward to seeing what Dr Pearce has to offer. The three of us will come up with something. We may not be coming up with any decisions tomorrow other than where to seek additional opinions. I will of course keep everyone updated. I am amazed at how fast word is spreading about Ben's osteosarcoma relapse. We have been receiving emails from all over the place. I am working on putting together a notification or subscription system for the web site. When it is in place I will probably ask a few of you to test it. Ben's spirits are high and we are following his lead.

    

   When I left work today there was a little blue sky peeking out between the gray rain clouds. The sun was shining as I decided to put down the top on my little convertable Beetle. It was warmer than it has been so I decided what the heck. For those of you in Florida and Arizona it may not seem like an big event, but, up here on April 1 it can definitely be something. The boys love it when the top is down and frankly so do I. I remember when I was a little boy and our family friend Nancy had a convertable mustang. I just loved it when she would take me for a ride in the back seat. We vacationed in Maine with her one year and I remember like it was yesterday a drive to Perkin's Cove. The boys get big kick out of the convertable and after all that's why we bought it. Anyway as I was driving home I was thinking that one of the lessons I have learned from Ben is that when you get a chance put the top down and enjoy the ride. A little bit before I arrived at home the clouds turned real dark and it started to sprinkle. I quickly pulled into a parking lot and put the top up - it's a manual top. The rain started coming down just after I was back in the car. It is absolutely pouring again complete with thunder and lightning, but, I know I will get to ride with the top down another day.

3/31/2008

   Yesterday was a really great day for Ben. We started the day by going to church and the congregation was amazed to see him so soon after his surgery. We had his wound drain tucked into his pocket so it didn't freak out any kids. When David, the minister, announced that Ben was in the church after the surgery everyone clapped.

        

  After church my brother Rob and his daughter showed up at the house to visit. They had driven up from Ct. to see everyone and visit the boys. Michaela is a couple of years younger than the boys. James was funny. He looked at her and said, "Boy, you've gotten bigger." She just pointed out that both of them had grown too. It made all of the adults in the room laugh.

       

  We were watching Ben to make sure he didn't play too hard and tire himself out. Our neighbor across the street was having her birthday party and the boys were invited. She is really cute little girl who absolutely adores the boys. She turned 5 and had a full house. They were lovely and invited Michaela to come over too. It was a wonderful party and everyone had a great time. We excused ourselves from the party after an hour or so because Ben wanted to go to a St. Baldrick's celebration in Albany. We also didn't want to tire him out too much.

       

   Ben and I went to the Pump Station in Albany for the St Baldrick's event. It is a fundraiser for the St. Baldrick's Foundation which provides grants to combat childhood cancers. At the event people have their heads shaved to show solidarity with the kids. They raise money by having the shavees collect money from people to get them to shave their heads. "If you give me 5 bucks, I'll shave my head." They had over 70 people shave their heads and I think they raised over $40,000, but, it may be more. Ben wanted to go because one of the shavees was Dr Pearce, his oncologist - that is Dr JENNIFER Pearce. It was amazing to see how many women shaved their heads. There was a 12 year old girl who did it in support of her 3 year old sibling. We watched as a 20 year old young woman whose hair was just growing back after treatment was given the honor of shaving her father.

    

   Dr Pearce had told Ben about the event when she told him the cancer was back. She had told him she would let him participate in shaving her head. When we were in the hospital we didn't know if Ben was going to be able to make it to the event. Dr Pearce showed up at his room and let him cut a lock of her hair so he could be the one who started it. When we arrived at the event I found Dr Pearce and told her that when James showed up at the room he was thrilled about the hair that Ben had cut from her head. Stacey and I watched as the boys hatched a plan to get more of her hair so they could clone her and make more doctors just like her to fight cancer. She was visibly moved. As Dr Pearce was having her head shaved there was a TV reporter interviewing her for part of it. A couple of professional photographers and tons of amateurs taking pics. She must have felt like a rock star. While all of this is going on her hair is coming off in large pieces. I realize that she is looking out at a see of faces. A sea of faces that includes the children she is actively treating and has treated. I listen to the people cheering her on and realize she is looking at adults she has treated as children and the families of children who have lost their lives to cancer. She is looking at hospital staff members, interns and residents. It is a very public way to shave your head and it was such beautiful thing to watch her do and I can only imagine the emotions and thoughts running through her mind. This morning I looked at the Times Union and I wasn't surprised to see a picture of Dr Pearce in the chair getting her hair cut on the front page. I was surprised to see Benjamin standing in the front of the crowd of people looking on. It is busy picture and they may have wanted to crop it, but, they couldn't because of the look of adoration on Ben's face and the great look on Dr Pearce's face as she looks back at him. The look on his face is a priceless look of love, respect and hope. I am so glad he was able and wanted to go see her do such a wonderful thing. By the way the woman cutting Dr Pearce's hair is the same woman who cut James' hair at this event last year when he did it.

           

      

 Dr. Jennifer Pearce of Albany Medical Center gets her head shaved at a fundraiser to fight cancer in children

on Sunday, Mar. 30, in Albany. (Paul Buckowski / Times Union)

    

http://timesunion.com/AspStories/story.asp?storyID=676733&category=REGIONOTHER&BCCode=HOME&newsdate=3/31/2008

   

       Ben and his mother just left for school. She is a Junior Acheivement volunteer for Ben's second grade class so he is going in for a couple of hours. Thank you for your prayers and the guestbook entries. We read them to Ben.

           

   As we learn more about what our next steps will be with Ben's treatment I will be including it on the site. For now we ar still focusing on the tumour removal surgery.

    

3/29/2008

 We are home now. Ben was discharged this afternoon. As in the past I did the overnights. It was nice to only have to do a couple of them. This morning while we were at the hospital Ben started crying. Tears were running down his cheeks. I was immediately concerned that he was in pain or something had happened when I wasn't looking. Did he turn the wrong way and twist his arm? Did he accidentally pull the sutures? I asked him, "What's wrong? Are you ok?" as I looked him over and sat on his bed. He said, "I was just thinking about PE." "PE? Why is school making you cry?" Through his tears he replied, "We are starting bowling in PE and I will never be able to bowl again." I was taken aback. I looked him straight in the eyes and said, "Ben, look at your arm. You are moving it as well as you were on Wednesday. Squeeze my fingers. Look how hard you can squeeze them. Even if you had issues with your right arm you could bowl with your left." "You're lying." "Ben, listen to my voice. Look at my face. Have you ever seen me more serious with you? If you want to bowl, you will bowl. You will play sports and we will make whatever accomodations it takes to make them available to you. We will MAKE it happen." He said he was afraid he would embarass himself at school. I told him every kid was afraid of embarassing themselves at school. I also remminded him how proud his PE teachers were of him. How they would tell me how great he was doing and how amazing they thought he is. I also reminded him that his PE teacher, Coach Dagel, had offered to work with mornings before school on any of the games they were playing or any exercises Ben wanted to work on. He softened as my words rang true in his mind. I could see his mind working and he realized that everything I was saying was true. He smiled and made a joke. When his mother arrived later he talked a little with her about it because I brought it up. In his mind it was already resolved. 
    
When he was discharged I was at the "tryouts" for the 7-8 year old Little League teams. I am coaching again because the boys want to play. I left the tryouts and asked my book coach and another coach to cover for me. When we were leaving the hospital Ben was ready to go to the evaluation session and I think he was a little disappointed when I told him that he and James didn't need to go because coaches' kids were assigned to their parents' team. He is looking forward to baseball and bowling. Ben is a really strong kid, but, it is in moments like this morning that show that he is a vulnerable little boy and not a super hero. It is also in these moments that he proves his strength. We all have fears and things that scare us. Do we as adults manage to move through them as quickly as our children do? 
     
We will be home tomorrow with the exception of church in the morning and then a little while at a St. Baldrick's Fundraiser for childhood cancer research. Ben's doctor, Dr Jennifer Pearce, will be having her head shaved in tribute to the children she cares for as patients and human beings. When she told Ben his cancer was back she asked him if he would help shave her head. When we thought he might not be able to make it to the "Pump House" in Albany for the fundraiser she came to his room in the hospital on Friday so he could cut off a lock of her hair. The fundraiser starts at 1 PM so we'll head down there for that if he is up to it.

3/28/2008

  The surgery went really well. The tumour was removed with excellent margins of at least 1/2" and the only had to remove a little of his chest and back muscles. The tumour defintely contained calcium so the octeosarcoma has metasticized. Stacey talked to Dr DeCaprio and he is beside himself. He checked under Ben's armpits 2 and a half weeks ago and felt no lumps in his lymph glands. I saw him do it and he did a thorough check. I was horsing around with Ben and James last week and recalled picking the both up with my hands under their armpits and I felt nothing. Although both of them did say, "Ow!" On Tuesday night Stacey and I could see some puffyness in the area under the armpit. On Wednesday it seemed more pronounced, but, we convinced ourselves we were seeing things. When Stacey was helping Ben get dressed on Thursday morning she brought Ben to me and said, "Look at this." I could see visible growth in the size of the lump. I touched and it was hard. I was in shock. This thing was growing before our very eyes and there was Ben smiling at me and saying, "Can we go now? I want to get to school."

            

   When the surgeon came out of the OR to tell us everything went extremely well he told us the tumour was the size of a grapefruit. Based on what I had seen and felt that morning I don't believe he was exagerating. The anesthesiologist came up to Ben's room at the PICU after the surgery and told Stacey they didn't have to measure it to see that it had grown markedly since Tuesday when the CT and bone scans were done. When I called my brother Rick to tell him how everything went I told him about the size of the tumour and he said, "Do you know how big a grapefuit is?". I actually laughed. I had asked my sister to call my brother Rob because she had his phone number in her cell phone and she told me that she thought he didn't believe him about the size. We know now that we cannot hesitate or delay when fighting this monster.

         

  Ben has been off pain medication since a 1 am dose of Tylenol 3 because he gave his pain level a 3 and said it was his catheter that was bothering him. When the nurse removed his foley catheter this morning he was not pleased and told the nurse, "It hurts so bad I want to shout." She told him to shout away. He decided he really liked her. She graduated from the same elementary school that he goes to.

               

   I am sorry I couldn't update from the hospital. I will be bringing my laptop next time and hopefully I can get a good signal. As we were getting ready to go to the hospital I realized my cell phone was not working. I tried swapping an extra battery and switching chargers and it is gone. I know many of you were trying to call. I am going out shortly to get a new phone.

           

   Thank you all so much for your outpouring of love, prayers and kindness. Ben is up for visitors, but, at this rate he may be home from the surgery before the weekend is out.

       

   We will be looking at the next steps in treatment for lung nodules over the next week while we monitor them to make sure they are not acting aggressively.        

3/27/2008 


   I took Ben and James to school today. James is staying at school all day. His teacher called us at home lst night to see if there was anything special she should do or know about today with James. We told her to just try to keep it as normal a day as possible for him. If he has any questions or issues the counselor is ready and available for him. People were blown away that Ben was there. He wanted to go in to make sure his classmates were ok and not afraid. They aren't worried about Ben at all. One boy told him that he would seehim next year and then changed it to soon. A little girl asked him for his phone number. They wanted to know when they could visit him. He was graceful under fire from the quesstions and got a great hug when he was done. No fear, no worries just love. We will be at Albany Med at 10 AM and his surgery is  scheduled for 11 AM.

                

       I will put an update on the web site as soon as I can. We will also try to call around. I know that there are a great number of people watching the site today. We can really feel all of your prayers and kind thoughts. Please feel free to share updates with others and leave messages in the guestbook. I am working on setting up a way for people to receive emails whenever I update the web site.

3/26/2008

  Yesterday a bruising blow was delivered to our family. It was scan day for Ben. We started in the morning with Ben having blood drawn and getting contrast for his whole body bone scan. Then we went to have his CT chest scan. After his CT scan we had a nice lunch at a sports bar/restaurant, “The Recovery Room,” across the street from the hospital. He whole body bone scan was supposed to begin at 3, but, it started late. One of the neat things about the bone scan is that we can see the image appear on a screen. We have seen Ben’s skeleton many times. I can identify all of his growth plates, bones and bladder. Stacey and I both saw things on the scan that we had not seen before. My first thought was does he have anything in his shirt? Are there metallic decorations on that shirt? Then I tried to fit the shape into known bodies parts…could it be his shoulder blade? A rib? We were horsing around the other day could he have a bone bruise of some sort? Then the radiologist came in to personally make sure Ben was in the correct position and asked the technician to do more images. He studied the images as they appeared. He confirmed that in the CT scan earlier something had been noted and that those images showed more detail. He also told us that Dr Pearce was aware of everything and that if she needed to page him or we needed him she could reach him. He was very kind although careful about how much he told me. Stacey had excused herself when he came in because we both new this was not typical and not good and she didn’t want Ben to see her cry at that point. We arrived at the clinic at 4:18pm. Nobody was there except Dr Pearce and Toshiko (Ben’s favorite child life specialist. Dr Pearce looked Ben over and listened to his lungs. She and Stacey went off to the other side of the large room and talked quietly as Ben and I played chess with Toshiko watching and rooting for Ben. Ben made one last move as Dr Pearce came back with Stacey to talk with us. As I sat across the table from Ben Dr Pearce very gently put a hand on his shoulder and talked to him about the cancer treatment he had gone through. Then she said, ”Ben, remember how we talked about it being possible for the cancer to come back.” He nodded. “Ben it has come back.” I watched as my happy child had the energy sucked out of his body. His shoulders dropped, the air sucked out of his lungs and the blood ran out of his face. His expression was one of absolute shock and disappointment. He put his elbows on table and dropped his head into his hands…took a deep breath and exhaled in a heavy sigh. Then he picked up his head, lifted his shoulders and with an attitude of strength proclaimed, “I did it before and I can do it again.” He looked at Stacey and said, “Please don’t cry Mommy.” Then he turned his attention back to me and the chess game and said with glee, “Hey, you can’t move. I have you in checkmate. I beat you….again!!” My mind was swimming here was my 7 year old child getting news that would devastate an adult for days or weeks and he processed the information and immediately went back to living life. I looked at the chess board and thought, “Damn, he really did beat me.”

               

    I didn't sleep much last night. I read and reread every post from the ACOR email list and searched the Internet and TV for diversion. At 5:53 AM I crawled into bed alongside Ben and watched him sleep. I fell asleep a couple of times and then would wake when he stirred. Around 7 am I woke up and there he was wide awake staring me straight in the eyes. So close I almost couldn't focus my eyes on his face. He was holding my head in his hands just in front of my ears like a pumpkin in a vise. He looked me straight in the eyes and said loudly and commandingly, "Remember, focus on the positive." Then he climbed over me as he left the bed to go get dressed and have breakfast. I drove him to school and as he left the car to enter the building he turned to me with a big smile and said, "I can't wait until Thursday!" I looked at him like he was from Mars and said, "What are you talking about? Thursday is tomorrow. Why are you so excited?" He looked at me like I was from Pluto and replied, "Because, I get my cancer out again!" and I swear he skipped a few steps towards the door to the school as I stood there with what I am sure was a stupified look on my face. Where did this little boy's strength and wisdom come from?

                   

   Tomorrow at 11 AM Ben will be undergoing surgery to remove the tumour in one of his Lymph glands in his right armpit. There has been a little difference of opinion whether the tumour is in the chest wall or the lymph gland, but, they will find it when they operate. He will also be having a port-o-cath implanted to enable treatment for the remaining 2 nodules in his lungs. There is a nodule in each lobe of his lungs. We are not sure what the exact treatment for them is going to be. Our focus right now is to get him through the surgery tomorrow. We have been told that it looks like the tumour is encapsulated within the lymph gland tissues, but, nothing is certain until the surgery takes place. We are not sure how long the surgery will take. It is expected that Ben will be in the hospital for a couple of days at least. We really don't know what will happen after that. He may be able to continue to receive treatment here in Albany, but, it is also a possibility that we will have to go to NYC, Houston, Boston or another location that has a sarcoma center. We do feel that we are in wonderful hands here in Albany and would only be considering elsewhere if the best treatment for Ben is unavailable here.

           

  We find ourselves back in the middle of the stream with the faith that we will find the right rock to stand on until the flood waters pass.

3/25/2008

  Today I am reminded of a scene in the movie "The Good Earth" where the leading character holds up his baby son and proclaims to the world how handsome, and wonderful the baby boy is and then realizes what he has just said and holds him close covering his face and proceeds to proclaim that he isn't that handsome and that he is covered with boils. I started my last posting by proclaimng that "life is good" and that "osteosarcoma will always be a part of our life, but, is no longer a focal point." I went on to say our family life was returning to normal. Today our fruit cart was overturned. Benjamin had his 6 month scans and blood tests. The osteosarcoma is back, it has metasticized. He has a large tumour in the lymph glands in his right armpit and 2 nodules in his lungs, one in each lobe (side). They double checked and none of these were visible in his 3 month scans. The tumours seem very aggressive so Ben will be undergoing surgery in 2 days, on Thursday, to have the tumour in the lymph gland removed. Dr Pearce, his oncologist, is already contacting the leading osteaosarcoma specialists for assistance with the next course of action after that. There are new drugs that were not available last year and we will be seeking out the best treatments for Ben.

            

   I will post more details about the events today in a later post. I just can't bring myself to write any more tonight.

3/19/2008

  Life is good. Osteosarcoma will always be part of our lives, but, it is no longer the focal point. We are heading to Stacey's Mom's house for the Easter holiday. Ben asked me a great question the other day and if anyone has the answer please let me know. "What does Easter mean?" I started to tell the story of Jesus and he said, "I know that, but, what does the word 'Easter' mean?" We talked for a little bit before I finally just said, "I have no idea." We haven't had a chance to look it up and get more info on it. The first few places we looked had the same response I did. Kids come up with the greatest questions.

         

  I know I mentioned going to the Florida panhandle for spring break in April. The Light House Retreat folks put on what looks like a great program for childhood cancer survivors and their families. It is a chance to regroup away from day to day responsibilities and reconnect as well as meet other families. They cover all of the costs of a 6 day stay, but, the families have to get themselves there and back. We had been invited to participate. Yesterday I sent them an email declining the invitation. The travel costs are just too high for us and we don't totally trust our vehicles for such a long trip. We decided that there must be another family on the waiting list that needs this trip more than us. We haven't heard the details yet, but, we know there is a Make-a-Wish trip coming up in our future anyway. We have been doing a good job of getting our family back to a normal state.

             

  I have also signed up to coach Little League again this year. Ben and James both wanted to play and several of there friends have been asking if I was coaching again. I am really looking forward to it. I have learned several training exercises to use to teach hitting, catching and throwing and I have tried them out on the boys. They seem to be working. It will definitely be an interesting season.

Technorati Profile

3/12/2008

   We saw Dr DeCaprio today. He checked out Ben's arm and took an xray. The xray looked wonderful. We could see where the allograft had joined nicely with the bone. Everything is as it should be and there were no surprises in the image. The puffyness that we noticed is most likely caused by the way the muscles and tendons are attached to the bone. We can expect to see the arms as being asymmetrical from here on out. Ben has grown at least 3 inches since the surgery. His arms are now close to being the exact same lengths. He enjoyed seeing Dr DeCaprio and we talked more about the sports he wants to play. Dr DeCaprio was funny when Ben said he wanted to play hockey I could see him visibly tense up. He told Ben, "I can see you're going to give me troubles for a long time, aren't you?" Ben immediately said, "Yes." with a great big smile on his face. So the first part of the 3 month check up went well. The rest of the scans will take place on March 27th.

         

Advocacy Alert

  

   We have received information about an amendment being offered in the Senate that could result in increased funding for the National Institutes of Health and the National Cancer Institute. As you know the Children's Oncology Group receives funding from the National Cancer Institute to conduct the research and clinical trials that bring us closer to the day when all children diagnosed with cancer can be cured. Unfortunately, federal funding for NIH and NCI has been flat for many years and although our hope would be that the NIH would be able to fully fund peer reviewed grants (such as the CureSearch/Children's Oncology Group grant), any increase in funding for NIH and NCI is preferable to the flat funding they have experienced over the last five years.

         

   The Senate is currently considering the Fiscal Year 2009 Budget Resolution. The Budget Resolution establishes funding caps for broad categories of spending, such as Health, Education, Defense, etc. The funding levels in each of these categories will have an impact on appropriations for NIH and NCI.

              
   SPECTER/HARKIN AMENDMENT TO THE BUDGET RESOLUTION:

Senator Arlen Specter (R-PA), the Ranking Republican member of the Labor/HHS/Education appropriations subcommittee, and Senator Tom Harkin (D-IA), Chairman of the subcommittee, will be offering an amendment to the Senate Budget Resolution to increase funding for the National Institutes of Health by $2.1 billion in Fiscal Year 2009.

                 

   Advocates across the country have been asked to contact their two Senators today to seek their support for this amendment. You may call the Capitol Operator at 202-224-3121 to be transferred to your Senate offices. Or check www.senate.gov for contact information for your Senators.

3/11/2008

  Stacey and I both noticed that Ben's right arm looks a little swollen or puffy. We have both poked and proded him to see if it hurts. Yesterday Stacey touched a spot he said was tender. We already had a call into the Doctors to make the appointments for scans. Stacey called them and they returned her call today. We have an appointment tomorrow with Dr DeCaprio. He will check out Ben's arm. Ben has been doing great with his range of motion. I have even had him swinging a wiffle ball bat and hitting balls in the basement. We haven't been pushing or overdoing it though. At this point we aren't too concerned although we are very glad that we were already scheduled to see the doctors. I will be putting up an update tomorrow after the appointment with Dr Decaprio.

        

   On another note. We have been invited to go to a family retreat over the April break for childhod cancer patients and their families in the Florida panhandle. It's called The Lighthouse Family Retreats. They rent houses on the beach and take care of all the food and chores. They also have support programs and activities for the families. Their goal is to remove all responsibilities from the family for a week so the family can regroup and heal itself. It almost sounds too good to be true. The only hitch is they don't provide transportation so we have to figure out how to get there. If anyone has any extra Southwest points give me a call.

3/10/2008

   On Sunday we went to see "Madeline and the Bad Hat" at a local theater. It was a professional theater company’s adaptation of the book. We were the guests of the Starlight Starbright Foundation's Great Escapes program. The performance was very good and the boys liked it. Although James leaned over at one point and told his mother, "It’s the same 4 people over and over." 2 of the actors played multiple roles. After the musical the folks at the theater had set up an area for the kids to make their own funky hats. It was a great deal of fun.

     

   The boys made very colorful paper "Mad Hatter" type hats. We had a chance to talk to a couple of the other parents. The children that participate have many life threatening and chronic diseases. We talked with one mother who was telling us about her daughter completing her 2 years of chemotherapy treatment for Leukemia. There was a tone of relief in her voice as she talked about it. We only spent 1 year and the transition away from it has been tough. So I can imagine her true feelings. They say the families and parents often experience Post Traumatic Stress Syndrome.

               

   There were 2 cute little girls who sat next to us and they made lovely princess hats with Jewels and their names on them. One of them was a year younger than the boys and she was so cute. As we finished the hats and started to have lunch her energy level took a sudden drop. Her mother cradled her in her arms as she rested. After the lunch the event broke up and everyone was heading for their vehicles. Stacey and I noticed that they were having a tough time figuring out how they were going to carry everything. I gave my car keys to Stacey and offered to help carry something. I thought I would be carrying hats, or the big shoulder bag they had or some of the extra Subway subs that the event manager had foisted upon all of us. I asked, "What can I carry?" Her mother turned to me and said, "We thought you could carry Katey. We’re parked out front so it isn’t too far." Of course I said, "No problem." They told me that Katey had a port on her chest and tube in her abdomen. On the one hand I think they thought I would be scared of lifting her because of the port and tube and on the other I think they were encouraged when I said, "Oh, I’m familiar with those." I picked Katey up and carried her. Compared to the boys she was light as a feather. I asked her if I was holding her in an ok position and she said, "Yes." She smiled at me and told me I was doing a great job as I walked behind her mother the 100 or so yards to their minivan. My heart was really touched. A mother we had just met had placed her precious child in my arms. If you have ever picked up a child you know how they respond in you arms. Katey was in my arms with such love and trust I am still blown away by this little girl and her mother. I wish I could find the words to express how my heart feels. I have another wonderful child to pray for.

3/6/2008

   Yesterday Ben and I were fooling around in the family room in our basement. I had removed the railing on the stairs so I could get a large cabinet downstairs for Stacey’s Studio that we are building. The railing is probably about 12’ long. Ben picked it up balancing it carefully and lifted it over his head and then lowered it on the other side of his body. Basically stepped under it to the other side of it. He did it without thinking and I was flabbergasted at both the ease with which he did it and the height he was able to lift it. When I called Stacey down to see it we ended up having a contest between Ben and James to see who could impress their mother the most. I wish I had had the video camera handy. I may try to get him to do it again.

       

    I gave blood today. There was a Blood Drive being held at the facility I am working in now. I used to give blood regularly and had never started back up after I donated Bone Marrow in 2003. Ben received a great deal of whole blood and platelets throughout his treatment. As I lay there I pictured him receiving the blood that not only was mine, but, those who were in the room at the time. I also thought of the kids I have met who in many cases received far more than Ben did and in fact are still in treatment and needing blood and platelets to make it through. After they disconnected me and I was sitting at the refreshment table drinking my juice and eating a muffin I found myself watching everything that was going on. I found it incredibly emotional and choked up. I found myself saying thank you to one young man who had donated platelets though aphaeresis as I left. I think he may have thought I was a little bit nutty. I guess it was a good thing I didn’t try to hug him. If you donate blood you are a hero. Thank you.

3/5/2008

    Finally another update. We are coming up on the time for Ben’s bone and CAT scans. I find that every sniffle, pain, stomach ache or other normal childhood thing makes my heart skip now. A voice screams in my head asking, “Is this normal? How should I react? Is Ben being melodramatic to get a day off from school?” Stacey and I look at each other with looks that show we are both thinking the same things. Although the panic is on the inside we are both doing a good job of not showing it on the outside.

                           

   A few weeks ago we received a call from the school nurse. One of the other adults at the school had overheard Ben talking to one of his friends. He was telling the friend that his cancer was back. She called to check, but also to make sure we knew of his thoughts if it wasn’t. She was really sweet and said, “I just didn’t want him walking around all day thinking about it. It would be a really long day for him.” I think it also scared her. I immediately left work and went to the school. As the ladies in the office called Ben out of his classroom I asked the school counselor if I could borrow her office. She said yes and I asked her to stay in the room in case I needed help. As usual Ben was thrilled to see me. We sat down and I asked him about it. He said that he thought since he fell out of bed a couple of nights before that the osteosarcoma was back. He was also making a connection between a fundraiser for the Leukemia and Lymphoma Society I had attended the night before. I explained to him that we would tell him if we even thought it might be back. I talked about the way we had kept him informed the whole way through this and that we would never not tell him if it was back. He seemed to get it and then the counselor and I talked with him about who he could share his concerns and thoughts about cancer with instead of just worrying about it himself. He talked about Mommy and Daddy, the doctors, his teacher and the school counselor. Then he stood up, thanked us and asked if he could go back to his classroom. As I walked him back to his classroom there was spring in his step and and he skipped a couple of times and then stopped and told me he loved me. I got him back to his classroom just in time for his weekly spelling test. I know how I feel as an adult whenever I even contemplate the return of this monster. I immediately push it out of my mind because I don’t want the universe to hear my thoughts. Just in case “The Secret” is real. I also know that it is something I can’t control so I need not dwell on it. Although, I have seen the monster up close I have not had it inside me. In the same way that I never really knew what it was like to be a parent of child with cancer. I don’t know what it is like to be the child with cancer - to be faced with your mortality before you have even hit puberty, had your first real kiss, become tall enough to go on every ride at the amusement park or go to a PG-13 movie on your own. Ben has communicated many things to us and I have shared most of them here. He gets it. He moves on to the business of being a child and let’s us take care of everything else. I have come to the conclusion that that is what God wants all of us to do. Turn the things we can’t control over to the universe and get down to the business at hand – being good, happy, human beings. All of the religions I am aware of have this message within them and I respect that.

                       

    I read a quote from a young man that said something to the effect, “People call me a brave soldier or fierce warrior in this war on cancer. I am not the soldier, the warrior, the doctors and nurses are. I am the battlefield.” 

                      
                
1/14/2008

    Ben has had his first post treatment body scans and he is still NED. NED means No Evidence of Disease. He will be getting scanned and having blood tests every 3 months for 2 years and then it move to every 4 months. Thank you all for supporting Ben and our family throughout this rough journey. Ben is not without side effects, but, they are tolerable and getting better. He is being evaluated for an effect they call "chemo brain" and he has lost some of his hearing in the ranges above normal conversation. The "chemo brain" is presenting itself when he tries to express himself and in his short term memory. We are hoping this will improve and we are also trying to help him develop coping skills.

              

   Ben and I were playing with our video camera. It is really a toy video camera from Tiger. He was more... performing fake newscasts. Between newscasts he asked me if I would interview him. Here is the raw interview.

   

   

    Interview with Ben

12/5/2007

   Last Friday the boys and I went to River Rats game. The River Rats are a local AHL hockey team. The boys love the team and the mascot - Rowdy the River Rat. When the boys first went to a River Rats game they were about 4 years old. They couldn't say Rowdy so the started calling him Ratty. Ben still calls him that sometimes. It is like his own special pet name. We were watching the game when number 23 was on the ice Ben started screaming,"We know him. We know number 23. It's Mac. It's Mac." Sure enough it was the young hockey player who visited Ben in the hospital and brought the boys into the locker room last year. The boys were even more ecstatic when Kirk MacDonald scored the first River Rats goal. I looked over and they were both jumping up and down pumping their fists and arms in the air. There was Ben lifting both arms over his head. I am sure that I was the only one in the crowd who could tell there was any difference between his arms. I think I was also the only one who found themselves fighting back a tear of joy. Come to think of it there are some pretty nutty fans out there so there may have been a few other teary eyes in the crowd.

                        

 The boys are doing great in school. The other day they both came home with 100s on their practice spelling test. On Friday Ben is doing a discovery presentation for his class. It is going to be on Bigfoot. He and his mom were working on it today. They will be practicing it tomorrow. I am playing a big part in it for him. He has asked me to dress up in a big foot costume to approximate the look of a live bigfoot for the class. We told him we would have to get permission from the principal and he actually took it upon himself to go and ask her. So I don't scare the children I will be escorted through the hallway I found a costume with a happy, friendly looking bigfoot face. Hopefully there will be no pictures to post on here.

                                   

  Ben is scheduled to get his scans just after Christmas. I just found out my position is changing at work. I am being transfered into a different organizational unit. As a result of this change on December 24th all of our health insurance deductibles will be reset. We thought we had until the first of the year. Stacey is going to try to move Ben's scans up to take place before Christmas. If any of you are questioning the need for some type of nationalized health insurance or at least better regulation of the health insurance industry ask someone who is fighting for their lives or those of a loved one. Our elected officials in Washington have nothing to worry about and they don't understand because they and their families have 100% coverage for anything they want for the rest of their lives after only serving a single term in office and they don't pay a penny for it.

11/28/2007

   On Monday I went into the boys school because I had forgotten to have Ben use his inhaler. His lungs had sounded a little wheezy the night before so we are having him use it for a few days. It was uneventful. While I was there I ran into his teacher in the hallway. She told me that in the morning she saw Ben and several of his other classmates as they were coming into the classrom. She was standing in a position that put their backs to her. She commented to the teaching assistant that, "Over the holiday vacation someone had received a hair cut." As she said it she realized that it wasn't a nice short haircut that one of the boys had...it was Ben. Ben now has enough hair on his head that he looks like he has just a short haircut. It was a really wonderful moment for her as she realized how wonderful a head of hair could be for young boy. I was glad she told me the story.

                  

  The other day I was driving with Ben on an errand. We had bought wood to build a dog house for Seamus his beloved yellow dog. Stacey had called and asked me to pick up her laptop that was being repaired. I was driving towards the strip mall that houses the repair shop and hadn't told Ben where we were going. As we missed the turn to our house he asked, "Where are we going?" I jokingly said, "Nowhere, just for a ride.....Maybe I'll surprise you." I was thinking about stopping at Starbucks acrosss the street from the shop and getting him a hot chocolate. His mood changed quickly. He started to get quiet, a little pouty and introspective. I asked him what was wrong. He said, "We're going to the hospital aren't we? I thought they said I didn't have to go back for tests until December." I hadn't thought about it, but, we were driving on the same route we usually took to the hospital. I immediately told him where we were going. I apologized saying, "Ben, I would never do that to you. I would always tell you and let you know ahead of time if we were going there." He agreed that we had always told him when he was going to the hospital. He was happy and releaved that we were just running another errand. He did tell me that he missed Kelly and the other nurses. Based on some brief conversations with Stacey and Lisa at Noogieland I think he has been thinking a great deal about the hospital and the osteosarcoma treatments. Every so often tidbits come out or he gets very thoughtful and almost pensive.

11/21/2007

   It has been 2 months since I have managed to get myself to write an update. Several times Stacey has told me that I didn't have to write a masterpiece just an update. We have had many really great things happen during these 2 months. Benjamin is doing really well. In fact many people have commented to us that if they didn't know what he had been through they wouldn't even imagine that anything had happened. I have also been amazed at the number of you who have been checking the site religously. In the past few days I have realized that since everything has been great I have almost been in a state of denial that any of this has actually happened. Updating the site affirms that Benjamin's life has been at risk for a year. Updating the site brings so many emotions to the surface and I have never been very good at dealing with my emotions. I apologize for being so self centered and will now move on with the rest of this update and many more.

                                

 We are about to set off on a journey to Stacey's Mom's house for Thanksgiving. We will be packing up the car and heading to DoDo's house as soon as the boys come home from school. Our family has so much to be thankful for this year. Benjamin is NED. The boys are doing great in school. We live in an amazing community and all of you are apart of it. We have been the recipients of so much love and support for the past year. I could spend the rest of my life saying thank you and trying to recall every little gift of time and thoughtfulness that we have received and witnessed over this past year and I would not even begin to touch the surface. You are all amazing people and I am so thankful to you and for you. During this past year I have seen little children facing dreadful diseases comforting their parents. I have seen people sending gifts of prayer and comfort to children they will never meet. I have touched blankets and teddy bears bristling with the electricity of prayer and healing wishes. I have watched as a celebrity took the time to make two small boys the center of his universe for a few short minutes delighting them. I have watched nurses and doctors use every tool at their disposal to save lives and to give compassionate treatment to their patients. I have seen the joy in the eyes of a little bald child as he was handed a tootsie pop after a painful finger stick. I have witnessed the incredible bravery of a 7 year old spending 2 hours in an MRI machine. I have watched as an entire community embraced our family. I have heard an entire elementary school shout to the heavens with joy that one of their own was doing well after surgery. I have been overwhelmed by the speed with which word spread throughout the world to old friends that our family was in need. You have all responded in your own ways and for that we are all thankful. 9/20/2007

                  

  On this Thanksgiving Holiday please take just a moment and know that although you may have great deal to be thankful for yourselves. That each of you touch many lives and there are many people who are thankful for you and the things you do.

  Well we have wonderful news for everyone. Yesterday Ben completed all of his scans and blood test. He is officially NED, which means that there is No Evidence of Disease. Whoooo Hoooo!!! Yay!!! Yipee!!! He will be put onto a schedule of scans that will be every 3 months for a while and then every months, every six months and ultimately once per year. We are holding onto the belief that everything was localized in his arm and has been removed. Whatever wasn't there has been dealt with by the chemotherapy. In celebration we are leaving for Disney World in Florida tomorrow morning. When the fundraiser was held last April the committee who put it on told us to set aside some of the money right off the top to take the 4 of us to Disney World when everything was over. Now is the time. Stacey and I and the boys really need a break. It will be great to head for the world of imagination and fun. We are hoping to make arrangements for my Mom to come to Orlando to see us for a couple of days. Our journey continues. We still find ourselves in a position of being positive and look forward to working with the Green Drakkoman Foundation to help other families face childhood cancers with love, grace and the warrior spirit of the Green Drakkoman. I am sure we will have numerous stories, photos and videos from this trip to share with all of you. have a great 10 days and we'll see you on the internet in October.

9/11/2007

   Today Ben’s teacher called home to talk with us. Of course our first reaction was, ”Oh no, what trouble as he gotten himself into.” She had called to tell us that Ben was doing nicely. He seemed to be fitting in with the rest of the class and was handling all of the work he was being asked to do. She knew that he had missed a great deal of school last year and wanted to dispel any concerns we had. She did say he had difficulty with one assignment. She had asked the class to create self portraits and he was having obviously great difficulties with the assignment. She asked him what was wrong and he said he “didn’t know what to do about his hair.” She told him not to worry and either draw himself bald or with hair. He said,”That’s the problem. I don’t remember what color my hair was and what it looked like.” She told him he could walk across the hall and look at his brother James’ hair. He replied, “No I can’t. His hair has always been different from mine.” She finally convinced him that he could draw whatever hair color and style he wanted to draw. We can’t wait to see the finished drawing.

      

   It is true though, he has been bald for so long it is hard to remember him with hair. It is going to be interesting when it grows back because he has grown so much over the past year. His face has matured and I am sure he will look quite different when we do a side to side comparison with his pre-bald pictures.

9/4/2007

  Ok, so I never did get around to mowing the lawn. Ben and James are doing really well. Tonight was Noogieland night and they had a great time. They helped decorate a healing garden and celebrate life with a dozen kids. Noogieland has been so wonderful for the boys. There is something about survivorship and knowing that everyone there has had cancer touch their lives and life goes  on. The children laugh, they play, they run, they cook and they learn. I think they instinctively learn from each other and remind each other that their job is to be kids.

Benjamin and James - Unwritten

9/1/2007

  September 1st...Benjamin is home and we are having a lazy holiday weekend. I was just thinking that last year we were on a family vacation for Labor Day. We had had a great summer and managed to fit in all kinds of fun. Stacey tells a story of sitting by Lake Carmi and thinking about our house, our neighborhood, our children, our lives and thinking how wonderful everything was. She recalls being very thankful. Not knowing that in less than 2 weeks we would be getting the call from our pediatricain telling us, "Ben needs to get an MRI immediately." Those words echo in my ears as do the words from Dr DeCaprio, "It's definitely osteosarcoma." After a brief silence,"There is nothing you did to cause this and nothing you could have done to prevent it." Over the course of this year I have thought numerous times about our last "perfect" vacation. The conclusion I have come to is that there is never a last perfect vacation. Every vacation is perfect...as perfect as it can be. I think the struggle is to realize that any situation we find ourselves in can be perfect or perfected. It is easy when everything is right and going well to appreciate what we have. It is more difficult when we are facing unpleasantness that seems soooo large to realize that most of the time we control how large a part of our lives are focused on the unpleasantness. Enough sermonizing, as I have said in the past I often write here the words I need to read myself. I have just read them and I am off now to play with James and Ben. To have a perfect day and maybe even throw in a little lawn mowing.

8/29/2007

   I will be updating the site with some back dated entries between tonight and 8/22/2007 so make sure you check them out. Last night around dinner time Ben spiked a fever of 101 degrees. It hit just as we were leaving for Noogieland at Gilda's Club. I took James and Ben to Noogieland while Stacey waited for the doctor to call back. She came to Gilda's Club and picked up Ben to take him to the hospital. I followed with James after Noogieland was over and I did a little shopping. Ben was very disappointed to be back in the hospital. We all thought this was behind us. One last trip and it wasn't totally unanticipated...we were just hoping that we wouldn't be there. I switched with Stacey and stayed overnight. The nurse we had last night said that when they heard Ben was coming in they were all disappointed. Our nurse this morning told me that during the morning report several of the nurses expressed disappointment at finding Ben back on the floor. Ben had a really rough night. He didn't sleep very well and actually had a "night terror" that was a little scary. A little while after they started the Vancomiacin IV (1 am or so) he sat up in bed crying and saying he couldn't stop crying over and over again. His eyes were open, but, he wasn't responding to the nurse and me. It went on for several minutes and the nurse went to call the residents. I managed to wake him while she was on the phone with the doctors, he went pee and then fell back asleep. His sleep was fitful and I didn't sleep much either. I went to work today and brought James with me. I just spoke with Stacey and she said that he was doing well and the fever was gone. It broke during the night and when they took his temperature this morning it was normal. He received a transfusion today and he should be coming home tomorrow or Friday morning. I actually ran into Dr Pearce in the hallway as James and I were leaving. She was walking in and stopped me in the hall to get my impression of what transpired last night. It was really wonderful to know that she was completely aware of everything that had happened before she was even in the hospital. Dr Pearce is amazing.

8/22/2007

  Today I went in to work a couple of hours early to get a few things accomplished before people came to work. It is always nice to be the first one in the office. When I woke up James was in our bed, Ben was in James' bed and Stacey was in the bed in my office/Gramma Mac's room. I was the only one that managed to make it through the night in the same location. It turns out that Ben had an accident in his bed and James had already migrated to our bed. So Stacey moved Ben to James' bed and then she went into the other room to make sure I had enough room. James' and she are both bed hogs. One is ok, but, the 2 of them together always wakes me. Usually with a kick in the kidneys. I checked on Ben and his temp was slightly high, but, not enough to worry about.

        

   Our family was supposed to go to the Great Escape amusement park as guests of the Starlight Starbright Foundation and Six Flags. Work has been really crazy lately so I wasn't planning on going with them. When we started to worry about Ben getting a fever and not being able to go we had to change plans. We really didn't want to disappoint James and we wanted to make sure if Ben had any issues at the park we would both be there. By going in early I managed to work my hours. I ended up finding as quiet a place as I could in the middle of the park and spent close to 4 hours on conference calls. A few parents noticed me with my BlackBerry in hand and earpiece in my ear and they smiled knowingly. It is amazing that the technology exists to free people from there offices and still allows them to do their job. I am very lucky to have a job that allows me to have this capability.

           

  Ben did very well and we avoided rides that were too violent. They mostly watched shows and went on calm rides. I only had time to go on a couple rides. The boys had a great time and the Starlight Starbright Foundation is amazing. They really do a wonderful job and it was nice seeing other families laughing and having a great time in the midst of helping their children fight chronic and life threatening diseases.

  Ben has to go to the clinic tomorrow at 8:30 am to check his levels. We are hoping he doesn't need a transfusion. He wasn't quite right all day, but, we couldn't tell if it was because of excitement and the activities of the day or his counts dropping. We will find out tomorrow.

8/21/2007

  It has been a very long journey that we have been on this year. Chemotherapy is just the first major phase of this journey. Today that phase ended. Ben was in the hospital all weekend receiving chemo drugs. He tolerated them well. He only became sick once, on Sunday. There was a little concern that he was retaining fluids on Saturday night. The resident came in around 8 pm and asked if they had missed measuring any of his output. I told her they hadn't during the time that I was there. She said that she knew we usually were really good at not throwing any out without having them record it. Thankfully she didn't order any medicines on the overnight that would have him peeing all night. She just wanted to keep an eye on things and didn't think it was dangerous. Sunday morning he woke up peeing like a race horse. By Sunday afternoon he was back to normal. They weighed him and he was 37.7 kg. I asked the PCA to check and on Saturday afternoon he was 39.5 kgs. His weight upon coming in on Friday was 37.5 kg so he was retaining 2 kgs of fluid. The chemo drug he was receiving on Saturday was not as dangerous to the kidneys as the methotrexate he had received before. It was nice to see that they were paying close attention and also that his kidneys were functioning well.

                

  I said earlier that the first phase - chemotherapy/surgery/chemotherapy - ended today. He was supposed to receive his Neulasta shot today. On Monday morning we had called the mail order pharmacy that our insurance provider requires we use. We called them just after they opened. We tried over the weekend and were told by the 24 hour help line that the "specialty" prescription pharmacy was only open monday-friday so there was nothing they could do. We had to call back Monday morning 8 am so that is what we did. The pharmacist assured us we would receive it this morning. It showed up around 5 pm. The clinic was closed so we couldn't bring Ben there to have one of the nurses give the shot to him. When I came home I had him recline on the couch and I gave him the shot. You need to know that I am almost phobic in my fear of needles and shots. In a very odd way I was honored to give him the shot. He handled it very well and I managed to be a rock of compassion and skill. He was more concerned about whether or not his brother was peeking than the fact that his father was giving him the shot.

               

  We are supposed to be going to Great Escape tomorrow with the Starlight Starbright Foundation. On Thursday Ben will be going to the clinic early in case he needs a blood transfusion. So far he has avoided any fevers. We are hoping that he is healthy for the Drake Bell concert on Friday night. He and James have been talking about little else. They are looking forward to this concert like it was Christmas. I still haven't heard if anyone was able to arrange back stage passes or a meet and greet with Drake Bell. I never told the boys we were trying so they wouldn't be disappointed if it didn't work out. They can't believe how great the seats are and I can't believe I am going to this concert. I am sure I will be the oldest person sitting in the first 3 rows unless Stacey comes with us.

           

Our Goofy Goobers

            

8/18/2007

  We are in the hospital today and tomorrow for Ben's last chemotherapy treatment. I will elaborate more about the day and our feelings as the treatment phase of this adventure is coming to close. If anyone wishes to visit feel free. Ben should be finishing up the chemo around dinner time tomorrow. It is hard to believe that it has been almost  year since it all began.

8/10/2007

  Ben's platelet ount is still very low. His last round of chemotherapy has been postponed until week. He should be getting admitted on Friday and then receive the Cisplatin, Doxyrubican and Dexa-something or other. I'll update it correctly tomorrow when I can look it up. Tomorrow James is going with a friend to Great Escape & Splashwater Kingdom. It will be nice for him to have some special time.

8/9/2007

  We are going in to the clinic tomorrow to see how Ben's blood counts are doing. His platelet count was too low for him to start his LAST round of chemotherapy. He may need to get a transfusion. When he starts the next treatment depends on what we find tomorrow. Ben is doing really well. He has a great attitude. James has been a little sour lately. He keeps talking about wanting to stay up all night. We think he just needs a little extra cuddle time and attention.

          

  Today we went to clinic because a Local TV station was doing a story on the Art therapy/Reiki program at the hospital. Ben has done really well with it. He enjoyed spending the time and we think it helped him keep his great attitude. I took Ben thinking that they would be interviewing him. It turned out they interviewed me instead. I should have shaved today. They filmed Ben and me playing chess. He took my Queen. They also interviewed his art therapy/reiki practitioner and she worked with Ben for a while demonstrating what a typical art therapy session with Ben was like. It will be aired this Sunday on Channel 9 News - 6:22, 9:22, 11:22. It will be interesting to see what the story covers. I was really skeptical about the art therapy. I originally thought, "Oh well, he enjoys arts & crafts so it won't be a total waste." I was lucky enough to be there one day when she worked with him. I am convinced that it was definitely beneficial. She pulled some of his feelings out of him and listened while he created a poem. I think it was good for his soul and psyche. To have people in the hospital who have nothing to do with needles, IVs, drugs, blood, vitals and weight helps the children stay children. Helps them to remember that they are more than the diseases they are fighting.

             

  On a sadder note we found out that one of the other children we have met on this journey has passed away. Ben had been his room mate a couple of times. He was fighting neuroblastoma and had gone to Boston to receive a bone marrow transplant. In order to receive a bone marrow transplant the patients own bone marrow is detroyed using drugs, radiation or a combination of the 2. It leaves the patient in a highly compromised position because for all intents and purposes they have little to no immune system. Christopher's body was attacked by infections and/or a fungus that took advantage of his situation. The doctors tried to treat him, but, his little body could only fight for so long and the drugs could only do so much. He would have been 5 years old on August 29th. www.caringbridge.org/visit/christopherramsey

8/7/2007

  Ben has been performing in the hospital and we are starting to put the videos together. We have plans for a couple of them. Here is the first and it is very raw. Ben enlisted James to participate in this one.

8/4/2007

  We arrived at the hospital around 6 pm last night and Ben was set up to receive fluids soon after our arrival. It was an uneventful night with the exception of having to switch pumps because the older one was triggering an AIR alert over and over. His line was switched to a newer pump and everyone in the room was able to get some sleep. Today he started receiving his last methotrexate infusion. He receives it over 4 hours and when I left it had just emptied. Now he will be receiving a rescue drug, fluids, diuretics and anti amedics until we get to go home. After this weekend we will have one last treatment next weekend. They call it graduation.

           

  After arriving and getting settled I was talking with a couple of the moms in the hallway. Ben was on the verge of falling asleep. Their children have AML which is a type of leukemia that usually affects adults. One of them is a little older than Ben and the other is younger. They have both been battling for longeer than we have. The little one is cute as a button. Her mom was telling me that they are fighting the battle day by day and that they are at the point of using any experimental drug or treatment that can to extend her life. Hoping for a new drug that can put her into remission. Praying for a miracle. I have said so many times throughout this year how blessed we are. Spending time in the trenches with Ben has shown me the extent of our families riches. Please tell someone you love them today. Please call that someone you've been meaning to call. Please have a guilt free ice cream cone or dessert. Please look around you and realize you are blessed, you are loved and I for one am extremely thankful that you exist.

8/1/2007


Ben went to the clinic yesterday. His blood counts were fine. He is doing really well. Stacey talked to Dr Pearce about where we are in the treatment schedule. It started by Dr Pearce sitting down with them and saying, "It looks like we're almost done with the chemo." Although I heard this second hand from Stacey I think Dr Pearce's statement shows why we really appreciate her care. She said "we're" and to me that means she is in the game with us. It is wonderful to work with doctors, nurses, child life specialists and all the other staff we have come into contact with that really allow themselves to connect with the children and families. It has to be really dangerous for them. I can only imagine the pain their hearts absorb over the years. I have only been in this for a year and I think of the children we've met, even just casually, on a daily basis. I have shed more tears since last September than in my entire life. Many have been tears of grief, fear or loss, but, many have been tears of joy, pride and love. I much prefer the latter.


  Ben will be going into the hospital on Friday for his last methotrexate round. He will be in over the weekend. Next week we will go to clinic and his blood counts will be checked. Assuming no fevers or mouth sores he will go in the following weekend for his LAST chemotherapy treatment. Wow, I had to stop typing and reread that last sentence a few times. That treatment will only be for 2 days. After that he will have his heart and hearing tested, CAT scans, bone scans and x-rays to make sure everything is clear and then we will move into the surveillance phase. I was reading in the ACOR email list we are on about this next phase. One of the parents used a term to describe it...Scanxiety. Another new feeling to experience.


  It has been almost a year now. Ben received his official diagnosis on September 25th. When the folks who put on the benefit for Benjamin with Carrabba's at the Shaker High School told us they wanted us to use some of the money to go to Disney World is seemed like such an extravagance. It also seemed like there would never be time and that the chemotherapy treatments would go on forever. I now understand how wise they were. A few weeks ago without telling Stacey and the boys I went to the AAA travel agency and put together a trip. I had heard that we could get the Disney Meal Plan for free if we went in September. I wanted to push it back as far as possible to make sure we were done with Ben's chemo, scans and everything else. I booked the trip for September 21st - 30th because there was a special on the 10 day park hopper pass and 5 days just seemed to short. You know the rational...may as well include the weekends...ok that's 7 days...for just this much more I can add 3 more days....we're there anyway. So it ended up being 10 days. As I was sitting there I realized that September 25th is in the middle of the trip. I had told the travel agent that Ben had been sick and that we were taking the trip to celebrate. I hadn't told her everything. I suddenly choked up and my eyes got a little teary. I didn't cry. She asked, "Are you ok?" I said yes and told her that Ben had had osteosarcoma and that I just realized that we were going to be in Disney World on the anniversary of his diagnosis. As I realized this my mind was replaying every feeling I felt that day. I was thinking how we were going to be at "The Happiest Place on Earth" a place "Where dreams come true" 1 year after the day the earth stood still. This year Disney is celebrating the "Year of a Million Dreams." The travel agent has told us that they are going to tell the folks at Disney about Ben and our family and hopefully we will get to experience some  extra Disney magic.  My Dream is my family. We are flying down on Southwest and will be taking Disney transportation to Disney World. There are a number of people We'd love to see down there and some other places to take the boys, but, the rental car cost added too much to the trip. We sacrificed the rental car for more time at Disney. Hopefully, we can catch up with the folks another time or meet them somewhere on Disney property. I did tell Stacey about the trip. Although I have dropped hints to the boys I don't think they've figured out when we are going. They think it will be in January.


7/28/2007

  Last night was uneventful. We arrived at the hospital and were happy to find we had the bed by the window and bathroom. I am very surprised, but, I actually slept ok on the really uncomfortable pull out sleeper chair. I know it isn't because they have mysteriously become more comfortable. It is because my body has gotten used to it. I know this because although I slept ok during the night my back currently feels like someone is stabbing me right below my right shoulder blade.

       

  The nursing staff and PCAs asked Ben about his Double H trip. It was interesting to hear him tell them about his experiences. One of the nurses who was on the floor last night was also at Double H when Ben was there. She told us a couple more stories about him. She told me he was an amazing camper and really immersed himself in the experience. Ben asked me to help him send an email to his counselors last night to thank them for helping him have such a great time. We had a sheet with their email addresses on it so I typed exactly what he dictated to me. Most of their email addresses are at colleges so I am not sure when they will have access to their email accounts to respond. I am hoping some of them have photos of Ben. We sent him with tons of batteries, brand new SD cards for the digital camera he had and the boys VCam video recorder (small and cheap) and he was having such a great time he only took 7 pictures....3 of them of the floor. I have started to create the seperate Double H Camp page and will have it up over the next couple of days. Ben also wants to work on a surprise music video while he is at the hospital. We understand that James will be making a cameo appearance in it.

                   

   I must tell you all as Ben nears the end of the chemotherapy it is really an emotional and intellectual roller coaster. Our family is about to enter another phase in this journey. It isn't an end. I was thinking about it last night and it is kind of like being a little kid in the back seat being taken on a surprise trip.  The car drives along and we come to a new lake, a new vista, a new tourist attraction. It looks like we are about to stop and then the eternal question is asked, "Are we there yet ?" The answer of course is,"No." Even if we stop for a little while to enjoy the view it is eventually time to get back in the car.

7/27/2007


          
            

   The week has been a good week filled with as much of a return to normalcy as possible. There was a little back to school shopping. Visiting with friends the boys hadn’t seen since school was out or baseball ended. I took the boys and a friend to the movies one night. We saw “Fly me to the Moon” in 3-D. It was actually a pretty good movie. The boys loved it and I found myself laughing several times. I also found it amusing to watch the boys reactions to the 3-D and even found myself reaching out to touch something. There were also little details put in the movie that were funny – like a computer chip labeled "In-Smel" instead of "InTel."

       

   The boys and I also had fun with their new 4 wheel scooter-skateboard things. I took a couple of rides to show them how to do it. Wow, I don’t know if I would have survived my childhood if these things had been around when I was a kid. They are a blast, but, it was obvious immediately that helmets and pads were not an option. They boys had a great time getting used to standing on them and pushing off with one foot then coasting a short time. As they get used to them it will be fun to watch what they do with them. When they get real good I’ll stop watching and just make sure they both know how to dial 911. Of course the boys are all padded up and wearing helmets. I am working on finding some comfortable body armor to help protect Ben’s right arm when he is playing sports or just being as active as he wants to be.

      

   Wednesday night was the night before school started. The boys were very excited. Their clothes were all picked out and their backpacks were stuffed with their school supplies. They had both already met their teachers and saw their classrooms. They both had baths. Bath time around our house is always a little funny. It starts with the water being drawn and with the boys being asked, “Who wants to go first?” Invariably neither one of them wants to go into the tub first. They are playing a game or watching a TV show that simply cannot be interrupted. As the water is ready I usually track them down and ask remind both of them the, “The first one gets the clean water.” At that point their previous answers are reversed and the first one to volunteer gets to go in. It’s not completely true because we do usually let most if not all the water out and freshen it between the boys. On at least one occasion after an exceptionally dirty, sweaty summer day I actually cleaned the tub between the boys.

               

   As they both lay in their beds they kept telling us that they couldn’t sleep. They were actually in bed by 8:30. We read to them. We tucked them in and kissed them good night. We ignored them. We talked quietly to them explaining they needed to get their sleep. We ignored them. We made sure the correct lights were on or off throughout the house. We ignored them. We cuddled with them. We ignored them. We closed the curtains and blinds. We ignored them. Finally, James came into our bedroom to let us know that Ben had fallen asleep. I thanked him as I escorted him back to his bed. It was almost 10. I explained to him the importance of getting to sleep as I gently tucked him into his bed and kissed him good night. I sat in the room with him and softly told him to keep his eyes closed and just relax. I could see that he was really tired because he was fighting to keep his eyes open. He was asleep by 10:30. It was so cute to see how excited they were about the next day. I think it was easier to get them to bed last Christmas Eve.

              

  The first day of school went well and the boys told us it was really nice to see their friends and that their new teachers are great. Although, Ben commented immediately that he still loved Ms Hock and Miss Kathy. We went to Applebee’s to celebrate and had a wonderful meal. We didn’t stay for dessert because we had promised the boys to take them out for ice cream. We went to a local ice cream place called “Coney Island.” Ben, Stacey and I all chose soft ice cream while James chose his favorite – Chocolate Chip Cookie Dough. As we ate our ice cream the boys and I walked to the adjacent roller skating rink – Guptill’s Arena. The boys really want to try skating and I think I will have to take them there one of these days. I wish I knew how to roller skate well enough to teach them. I’ll be the on with the pillow tied to my butt.

 

Stacey, Ben and I finished out soft ice cream as we all piled into my convertible VW bug. The cone they gave to James was huge (ordered a small) so he was still working on it as we pulled out onto the busy Route 9. Traffic was moving rapidly as I entered the driving lane. The top was down so we could enjoy the warm fall night air. As I was speeding up Ben started laughing hysterically. James started screaming, “Make it stop! It’s melting! It’s going everywhere!” over and over. I couldn’t do anything because I was driving and the traffic was enough to keep me stuck in the fast lane. James was sitting behind me so I couldn’t see anything. I looked at Stacey as she turned to the back and saw that although she was concerned she was stifling laughter herself. The warm night air was melting his ice cream as it hit the cone and blowing the ice cream into his face and all over him. She told him to, “Lick the ice cream cone around all the sides faster.” I heard him say, “I’m trying, I’m trying.” I was trying to maneuver my way into the slower lane as she took the cone from him and handed him napkins. She licked the cone as he wiped the ice cream off of his face, t-shirt, pants and out of his hair. He was doing his best to clean up the seats and car too. As she handed the cone back to him he said, “Sorry Daddy.” I asked him why he was sorry to which he replied, “Because the ice cream is all over your seats and car.” I said, “Don’t worry about it. You didn’t do it on purpose and it will all clean up.” He traffic had slowed and we were at the point in the journey home that there were plenty of stop lights. We all laughed about what had just happened as Ben was finally able to recount to us what he had seen as the ice cream started to blow into James’s face.

                    

   I dropped Stacey and James off at the house and gathered the necessary supplies for Ben’s first night at the hospital. He was going in to receive fluids and prepare for the receiving his 3rdround of extremely high dose Ifosfamide chemotherapy. The previous 2 times have worked to shrink the tumors in his lungs. He had a bad reaction the first time. During the first time at one point he became very angry and was crying inconsolably. One of the nurses told me it was the only time she had seen Stacey cry when Ben was in the hospital. The nurses were a little upset as well. Their kind, gentle, always happy Ben was briefly not himself. The effects only lasted for the day because he was fine when I returned that evening. He had made it through that day and was improving steadily thereafter and that is why we went to San Diego instead of canceling his wish. During the 2ndround there were a couple of days when he was a little extra happy and a little extra weepy, but, nothing at all like the first time. We think he will be fine during this time as well.

          

  On the way to the hospital Ben was a little melancholy. I asked him what was wrong. He said that he wasn’t happy about missing school. He missed his friends and not being there made him more of an outsider. I asked him if any of his friends had ever been unkind, made fun of him or treated him differently. He told me that the only one who had was James and that was only once. I asked him about the kids playing with him and he said that sometimes the boys wouldn’t let him play football with them. He didn’t really want to play because it was a little too rough. Apparently when the teachers aren’t looking the boys sometimes tackle each other. He told me the one boy who always seemed to try extra hard to play with him was Noah. I replied, “Noah is a really good friend then isn’t he.” He agreed and said, “So is Zachary.” I asked him if there were others and he started rattling off names that seemed to include all of the classmates he had ever had – “Gabe, Brandon, Gabby, Zia…”. I pointed out to him that it sounded like he had a great deal of nice friends. We rode further and all of a sudden he said something that caused me to do a double take. “I wish there was someone else at school who had cancer.” I asked him what he meant by that and he explained, “It would be nice to have someone that I have more in common with at school. Nobody at school understands. I’m different. I’m bald. I want to be like everyone else.” Wow, in that one sentence there are so many issues.

            

   In that instant I am realizing that my little Benjamin is growing up. I remember when Dr Pearce told us Ben was at a perfect age to have cancer (when he was 6) because he was old enough to participate, but, young enough to not be conscientious. He is 8 now. He has grown 6 inches since this began. He has gone through 1stand 2ndgrade and is starting 3rd. He has lived one quarter of his life with the specter of osteosarcoma surrounding him. In the blink of an eye, as I am driving all of this passes through my mind. It’s a wonder I stayed on the road. I started to talk with him about all of the things he has in common with his friends. It was very easy for him to find things he had in common with others. He found ways that he fit in. He talked about the people who understand and try to understand his experience. We talked about Noogieland and Double H and people outside of school. He mentioned the survivors he knew – Kirk MacDonald from the River Rats, Brendan from the Siena Relay for Life  and Joe from Double H. He also brought up Kylea and Sammie as two of the kids that he knows who have faced cancer. He seemed to be feeling better about  himself and his situation as we approached the hospital. I tried to validate his feelings and we also talked about how many of his friends had expressed to him ways that they feel different from other kids.

  The week has been a good week filled with as much of a return to normalcy as possible. There was a little back to school shopping. Visiting with friends the boys hadn’t seen since school was out or baseball ended. I took the boys and a friend to the movies one night. We saw “Fly me to the Moon” in 3-D. It was actually a pretty good movie. The boys loved it and I found myself laughing several times. I also found it amusing to watch the boys reactions to the 3-D and even found myself reaching out to touch something. There were also little details put in the movie that were funny – like a computer chip labeled "In-Smel" instead of "InTel".

       

   The boys and I also had fun with their new 4 wheel scooter-skateboard things. I took a couple of rides to show them how to do it. Wow, I don’t know if I would have survived my childhood if these things had been around when I was a kid. They are a blast, but, it was obvious immediately that helmets and pads were not an option. They boys had a great time getting used to standing on them and pushing off with one foot then coasting a short time. As they get used to them it will be fun to watch what they do with them. When they get real good I’ll stop watching and just make sure they both know how to dial 911. Of course the boys are all padded up and wearing helmets. I am working on finding some comfortable body armor to help protect Ben’s right arm when he is playing sports or just being as active as he wants to be.

      

   Wednesday night was the night before school started. The boys were very excited. Their clothes were all picked out and their backpacks were stuffed with their school supplies. They had both already met their teachers and saw their classrooms. They both had baths. Bath time around our house is always a little funny. It starts with the water being drawn and with the boys being asked, “Who wants to go first?” Invariably neither one of them wants to go into the tub first. They are playing a game or watching a TV show that simply cannot be interrupted. As the water is ready I usually track them down and ask remind both of them the, “The first one gets the clean water.” At that point their previous answers are reversed and the first one to volunteer gets to go in. It’s not completely true because we do usually let most if not all the water out and freshen it between the boys. On at least one occasion after an exceptionally dirty, sweaty summer day I actually cleaned the tub between the boys.

               

   As they both lay in their beds they kept telling us that they couldn’t sleep. They were actually in bed by 8:30. We read to them. We tucked them in and kissed them good night. We ignored them. We talked quietly to them explaining they needed to get their sleep. We ignored them. We made sure the correct lights were on or off throughout the house. We ignored them. We cuddled with them. We ignored them. We closed the curtains and blinds. We ignored them. Finally, James came into our bedroom to let us know that Ben had fallen asleep. I thanked him as I escorted him back to his bed. It was almost 10. I explained to him the importance of getting to sleep as I gently tucked him into his bed and kissed him good night. I sat in the room with him and softly told him to keep his eyes closed and just relax. I could see that he was really tired because he was fighting to keep his eyes open. He was asleep by 10:30. It was so cute to see how excited they were about the next day. I think it was easier to get them to bed last Christmas Eve.

              

  The first day of school went well and the boys told us it was really nice to see their friends and that their new teachers are great. Although, Ben commented immediately that he still loved Ms Hock and Miss Kathy. We went to Applebee’s to celebrate and had a wonderful meal. We didn’t stay for dessert because we had promised the boys to take them out for ice cream. We went to a local ice cream place called “Coney Island.” Ben, Stacey and I all chose soft ice cream while James chose his favorite – Chocolate Chip Cookie Dough. As we ate our ice cream the boys and I walked to the adjacent roller skating rink – Guptill’s Arena. The boys really want to try skating and I think I will have to take them there one of these days. I wish I knew how to roller skate well enough to teach them. I’ll be the on with the pillow tied to my butt.

        

    Stacey, Ben and I finished out soft ice cream as we all piled into my convertible VW bug. The cone they gave to James was huge (ordered a small) so he was still working on it as we pulled out onto the busy Route 9. Traffic was moving rapidly as I entered the driving lane. The top was down so we could enjoy the warm fall night air. As I was speeding up Ben started laughing hysterically. James started screaming, “Make it stop! It’s melting! It’s going everywhere!” over and over. I couldn’t do anything because I was driving and the traffic was enough to keep me stuck in the fast lane. James was sitting behind me so I couldn’t see anything. I looked at Stacey as she turned to the back and saw that although she was concerned she was stifling laughter herself. The warm night air was melting his ice cream as it hit the cone and blowing the ice cream into his face and all over him. She told him to, “Lick the ice cream cone around all the sides faster.” I heard him say, “I’m trying, I’m trying.” I was trying to maneuver my way into the slower lane as she took the cone from him and handed him napkins. She licked the cone as he wiped the ice cream off of his face, t-shirt, pants and out of his hair. He was doing his best to clean up the seats and car too. As she handed the cone back to him he said, “Sorry Daddy.” I asked him why he was sorry to which he replied, “Because the ice cream is all over your seats and car.” I said, “Don’t worry about it. You didn’t do it on purpose and it will all clean up.” He traffic had slowed and we were at the point in the journey home that there were plenty of stop lights. We all laughed about what had just happened as Ben was finally able to recount to us what he had seen as the ice cream started to blow into James’s face.

                    

   I dropped Stacey and James off at the house and gathered the necessary supplies for Ben’s first night at the hospital. He was going in to receive fluids and prepare for the receiving his 3rdround of extremely high dose Ifosfamide chemotherapy. The previous 2 times have worked to shrink the tumors in his lungs. He had a bad reaction the first time. During the first time at one point he became very angry and was crying inconsolably. One of the nurses told me it was the only time she had seen Stacey cry when Ben was in the hospital. The nurses were a little upset as well. Their kind, gentle, always happy Ben was briefly not himself. The effects only lasted for the day because he was fine when I returned that evening. He had made it through that day and was improving steadily thereafter and that is why we went to San Diego instead of canceling his wish. During the 2nd round there were a couple of days when he was a little extra happy and a little extra weepy, but, nothing at all like the first time. We think he will be fine during this time as well.

          

  On the way to the hospital Ben was a little melancholy. I asked him what was wrong. He said that he wasn’t happy about missing school. He missed his friends and not being there made him more of an outsider. I asked him if any of his friends had ever been unkind, made fun of him or treated him differently. He told me that the only one who had was James and that was only once. I asked him about the kids playing with him and he said that sometimes the boys wouldn’t let him play football with them. He didn’t really want to play because it was a little too rough. Apparently when the teachers aren’t looking the boys sometimes tackle each other. He told me the one boy who always seemed to try extra hard to play with him was Noah. I replied, “Noah is a really good friend then isn’t he.” He agreed and said, “So is Zachary.” I asked him if there were others and he started rattling off names that seemed to include all of the classmates he had ever had – “Gabe, Brandon, Gabby, Zia…”. I pointed out to him that it sounded like he had a great deal of nice friends. We rode further and all of a sudden he said something that caused me to do a double take. “I wish there was someone else at school who had cancer.” I asked him what he meant by that and he explained, “It would be nice to have someone that I have more in common with at school. Nobody at school understands. I’m different. I’m bald. I want to be like everyone else.” Wow, in that one sentence there are so many issues.

            

   In that instant I am realizing that my little Benjamin is growing up. I remember when Dr Pearce told us Ben was at a perfect age to have cancer (when he was 6) because he was old enough to participate, but, young enough to not be conscientious. He is 8 now. He has grown 6 inches since this began. He has gone through 1stand 2ndgrade and is starting 3rd. He has lived one quarter of his life with the specter of osteosarcoma surrounding him. In the blink of an eye, as I am driving all of this passes through my mind. It’s a wonder I stayed on the road. I started to talk with him about all of the things he has in common with his friends. It was very easy for him to find things he had in common with others. He found ways that he fit in. He talked about the people who understand and try to understand his experience. We talked about Noogieland and Double H and people outside of school. He mentioned the survivors he knew – Kirk MacDonald from the River Rats, Brendan from the Siena Relay for Life  and Joe from Double H. He also brought up Kylea and Sammie as two of the kids that he knows who have faced cancer. He seemed to be feeling better about  himself and his situation as we approached the hospital. I tried to validate his feelings and we also talked about how many of his friends had expressed to him ways that they feel different from other kids.

  We had a great time since the update on the 20th. I may add a page to the web site just for this week. It is going to take me a couple of days to get it all on here.

            
  We went to the clinic yesterday and his counts looked great. Dr Pearce had been keeping tabs on Ben when he was at Camp Double H and she knew he had a great time. She asked us if we were ready for him to start chemotherapy back up. All three of us..Ben included said, "Yes, let's get it started again." We can see the light at the end of the tunnel. He has 3 or 4 more rounds and then we can put all of the chemotherapy behind us. He will be going in tonight after 6 pm to be accessed and start receiving fluids. Ben will start receiving high dose methotrexate tomorrow morning. He should be able to come home on Monday afternoon or Tuesday morning at the latest if all goes as planned. We anticipate doing the same thing next weekend. After these 2 rounds are done he will have at least 1 more to go. That will be 3 weekends in a row. The third treatment would be expected to finish on August 22nd. Many of you may recall that we have 2nd row tickets to see Drake Bell at SPAC on August 24th. It is really cutting it close so I am hoping everything goes as planned. I still haven't told Ben and James about the tickets. If it doesn't work out I don't want them to be disappointed. It is so cute seeing the boys when they watch the Drake and Josh TV show and talk about wanting to meet them or at least one of them. A couple of people are working on getting us backstage passes so the boys can meet Drake at some point. I haven't heard anything yet about the arrangements. Stace said I should have just asked for parking passes. The chemotherapy treatment he will be receiving just before the concert is the one that really knocks his immune system for a loop. Ben usually feels ok until the 3rd day after the treatment ends...so that would be the day after the concert. I checked out Drake Bell's MySpace page. If you want to hear some of his music you can go there.
           
  Ben and James are both doing really well. Stacey and I had a chance to recharge our batteries somewhat. I don't think either of us is at full capacity, but, it was definitely a much needed improvement. I never thought we would hit a point where we were really happy to be going into the hospital for chemotherapy.

7/20/2007

  We drove up to our friend Kathy's cottage in Chestertown last night. It is a very comfortable place. We arrived around 10pm. As usual or relaxed start yesterday meant a late arrival. It is a good thing that I don't mind driving in the dark. The boys were nice and tired when we arrived so it was relatively easy to get everyone to bed. Originally Ben and James were supposed to sleep in one bed, Gramma Mac in another and Stacey and I in the third. We ended up playing musical beds until it ended up with Ben and I in one bed and James and Stacey in the other. Gramma Mac managed to keep her solo sleeping arrangement. We were up early and went to a restaurant called Suzy Q's near the highway. It was very nice and the boys were able to order their favorites. James had a plain bagel and Ben not only had pancakes, but, they made him cinnamon toast. They also had homemade donuts which the boys each enjoyed the taste of. I of course enjoyed them even more. We took our time at breakfast because we were so early.

                  

   We weren't supposed to drop Ben off the Double H Camp until 10am. We putzed around, but, we still ended up getting there a little early. As we drove through the black iron gates towards a small parking lot we knew this was a special place. I rolled down my window to ask a young man were we should park. He was immediately welcoming. "Welcome to Double H. You can park anywhere over there. Don't feel like you have to park on the far side of the lot. Park as close as you can." As we pulled past him a group of about 10 counselors started cheering and clapping...shouting welcomes and greetings. We parked and before we could all get out of the car there were 2 counselors there to help with Ben's bag. The introduced themselves...Justin and Elissa (I hope this is correct). Justin took Ben's bag and Ben even handed him Caymus (Seamus) to carry. I have never seen him hand Caymus to a stranger before. Elissa asked if this was Ben's first time and he said yes. She told him very quietly and gently, "You are going to have a great time." She then shouted to the group of counselors we were approaching..."Here is Ben...This is his first time at Double H" They split in half as we followed Justin with Ben's bag and Caymus. As we passed they continued to cheer and individually welcome us and Ben. The love was palpable. I of course being the softy found myself silently choking up. We arrived at the main building for signing in and a mini check up for Ben. We could here upbeat music playing relatively loudly inside. As we entered the building another cadre of counselors and staff people absolutely cheered and clapped for each camper and family as they entered. James was afraid and did not want to enter. He stayed outside with Gramma Mac. One of the counselors, Josh, stayed with him and tried to make him feel welcome. He was really nice to him. Ben was weighed and we went over his meds and blood counts with the nursing staff. We saw familiar faces from Albany Med and from Ben's Fundraiser. We were walked to Ben's cabin. He is in the Muskrat cabin..that makes him a muskrat. After meeting his counselors we left Ben there. He is in good, kind, loving hands. Did I tell you the love was palpable? It turns out that this week Ben was 1 of 6 campers in the muskrat cabin. On our way back towards the main building after dropping Ben off we asked one of the Staff members, Kate, who we knew as a PCA from Albany Med is she could give us a tour of the facility. We had missed the open house in May because Ben had a high fever. She asked permission and was told it would be fine. She walked us around and it is an amazing place. The best thing I can do to show you everything about Double H Hole in the Woods is to point you towards their web site - http://www.doublehranch.org AS we finished the tour we happened to come back around past the Muskrat cabin. As we came down the hill we could see Ben outside already playing with counselors and other campers. At first he was oblivious to our presence. We marveled at his joy and how easy he fit into the activities. Ben saw us and said hi. James started to approach him and Ben said in a brotherly fashion, "Not now, you are distracting me from my game." We said goodbye again and headed towards the car. Once again I was crying as we walked to the parking lot. Stacey said to me,” I thought I would be the blubbering fool, not you." I couldn't tell her all of the reasons I was crying. I was crying happy tears because of the loving special place we had found. I was crying happy tears because I knew that Ben had found a place to just be himself and although cancer would be present he would be in a place of victory. I knew that this was a true oasis in this journey we were on. I was also crying very selfish borderline angry tears. Tears of "No, No, NO, this is a wonderful place, but, my son, my child shouldn't be here as a camper. We should be here helping not being helped." My tears rapidly changed to tears of thanks, thanks that this place exists. Tears of blessing towards all of the individuals that created and support Double H Hole in the Woods.

                

  As we drove away the counselors cheered for us and wished us a great week. James was very upset. We asked him why and he said, “Ben wouldn't listen to me." We tried to console him by telling him that Ben was distracted by everything that was going on. He said, "I just wanted to tell him that they had almost all of the Goosebumps books in their library. Goosebumps are his favorite. He wouldn't even listen to me." I really feel bad for James. We are trying really hard to make him feel special and many of you are also. I can only imagine how I would feel seeing my brother going for 6 days to a really cool camp. He knows that Ben is going through a great deal of nastiness. I am amazed at how well he is doing, but, the question is always there in our minds. Are we doing enough? It sucks to have cancer..it also sucks to have a sibling with cancer...it really sucks to have a twin with cancer. I understood why he didn't want to go into the main building. As Ben tells us all about his experiences we are going to have to make sure he does it in a James friendly way. We are going to try to make his week special, but, I know after seeing Double H we cannot possibly give James a comparable experience on our own. They have a family weekend program in the fall that we will all attend and the family ski program in the winter. So James will get to participate in some of the activities then. We are planning on taking James to Great Escape and working with him on experiments. We will also be giving him a couple of birthday presents while we are away. We left a couple at the camp for Ben and we are looking forward to hearing about the birthday celebration they have at Double H. We will be giving the boys the bulk of our presents when we get home and they are together.

 


7/19/2007

  Today has been a little hectic. Benjamin will be starting his camp adventure tomorrow morning. We will be dropping him off at the Double H Hole in the Woods Camp in Lake Luzerne. He is incredibly excited and will be there until the 25th. We are giving him a digital camera and VCam Now which is a small childrens video camera. We're sending him with 36 batteries. Hopefully they will last. He sometimes is afraid of the dark so in addition to a LED flashlight I gave him 6 of those chemical light tubes that glow for 12 hours. In preparation for the week there he went to the clinic at Albany Medical Center this morning. His platelet count is low, but, not so low he can't go. He will be bringing his counts with him so the medical staff knows exactly what is going on. The extensive effort the camp puts into making sure these kids can participate seems amazing to me. We will be posting everything Ben tells us about the adventure when we get back.

               

  We will be having a great time with James while Ben is at camp. We really want him to feel special. He has been an amazingly super sibling to Ben. We will be doing experiments, looking at stars, making inventions and just having a good time. Our friend Kathy is having us stay at her cabin in Chestertown for the first and last few nights. Over the weekend we will be going to stay at the cottage that Stacey's Aunt Carol owns on Lake Carmi in northern Vermont. We are planning on stopping in Bolton Landing to see our friends Pamela and David. We will probably catch up with them at their Ben and Jerry's shop in Bolton. James was asked about what he was doing this week by a friend. He replied with great excitement, "I don't know, but, Ben and Jerry's ice cream will be there." We are toying with going to Waterbury, VT to the B&J factory, but, it is way out of the way so we probably won't make it. We really want this to be a chance to relax so we are not making any real specific plans. Even if we end up doing nothing, but, sitting around reading, playing games, and making things with James we will be having a great time. It will be a NO stress week.

  One of the amazing memeber of our church showed up today with a surprise for us. She was hoping to catch us before Ben left for camp. She presented us with Batman and Baseball pajamas that she made for Ben, James and me. I am continuously amazed and thankful that we have so many great people surrounding and supporting us.

             

  I cannot promise I will have internet access to do any updates on the site. Suffice it to say Until the 26th if you don't see any updates it is because we are getting a much needed break.

  Ben will be going to the clinic the day after we bring him back from his adventure. They will be checking his blood counts and if everything is good he will be going into the hospital to start his last 3 week round of chemotherapy on that Friday. It seems weird, but, we are all actually looking forward to it.

7/15/2007

   I am trying something new. Here is a video update of an activity from yesterday. Please let me know how it works for you and if you enjoy it. You can comment on the YouTube page if you like. Also please remember that we have no control over the videos that YouTube supplies that they say are related to this one. We have a channel on YouTube under GreenDrakkoman.

7/14/2007

   Friday the 13th was yesterday. It turned out to be a great day. Ben went to the clinic and had his blood counts checked. We were expecting that he would be going in for a transfusion and platelets. It turned out that his counts had risen. The are stil low, but, his body is pushing them higher on his own. The transfusion is unnecessary. He is doing really well. We will take him back to the clinic on the 18th in the morning. He should be receiving a clean bill of health so he can go to the Double H Hole in the Woods Camp.

          

   Last night he was able to go to one of his really good friends birthday party. The boys played baseball with him. He is a really great kid and I had a blast coaching him this year. Brandon loves baseball so the party was held at a Valley Cat baseball game. Everyone had a great time and the boys were able to go on the field twice. Once for the whole ballpark to sing "Happy Birthday" and the 2nd time for them to sing "Take me Out to The Ball Game" during the 7th inning stretch. There a couple of adults that were really getting upset that the children would stand up. These adults were very rude and it was amazing to me that they couldn't remember what it was like to be a 7 year old. If it was that much of a hassle for them there were empty seats all around that they could have moved to. Ben was sitting right next to a husband and wife and in front of a guy that were the mean people. Everytime they would get upset and yell at the kids on the other side of them he would turn to the adults and inform them that the boys were there for a birthday party. He would also point out that he and a couple of the others (including James) were sitting in there seats so they didn't need to yell at ALL the kids.  I also saw him say something like "It's just a game." A couple of times he had to get up to go to the bathroom, ask me a question or get a drink. When he did he practically crawled out of his seat. He didn't realize the effect he was having, but, his unintentionally exagerated actions pointed out the absurdity of these adults complaints to the whole section. After he did this a couple of times the people just sat there and stewed. I think they could hear the other adults in the section grumbling about the adults behavior and need to lighten up about the kids. A couple of adults actually moved in the section to sit right behind the meanest guy and loudly kibbitz about his behavior. "It's a ball game. It's supposed to be about the kids."'It's minor league play. It's not like we are at Yanke Stadium paying a fortune for the seats." It really didn't matter that much to me because they could have moved and my kids weren't the ones causing their pain. Our kids had a great time.

          

   I checked this morning and Ben has started losing his hair again. It had just started growing back to the point that it looked like a really short brush cut.

     

  

7/11/2007

   Last night I came home from work and when I walked in the door immediately after greeting everyone I asked, "Who peed in the pool?" in a very stern voice. I was pretended to be a little upset and disappointed. We had talked about this and I wanted to make sure everyone understood that we had an "ool rule - NO pee in the pool." I of course have no way of actually knowing whether or not someone had actually peed in the pool. James very sheepishly and apologetically admitted that he had indeed peed "a little" earlier that day. He immediately said,"Ben did a little yesterday." Ben had fallen asleep on the couch so he wasn't able to participate in the discussion that ensued. I talked to him when he was awake and we all have a new understanding about peeing in the pool. They think I can tell. Stacey came up to me and asked, "How did you know they peed in the pool?"  I was going to be a smart Alec and say, "I actually thought it was you." Instead I admitted to her I had no idea. I just remembered being a little boy. I was surprised how quickly they both admitted to doing it. It's nothing a little extra chlorine and shock can't fix. I am just thrilled they are spending as much time in it.

             

   Ben is receiving his platelet transfusion and it looks like that will be it for today. He will go back to the clinic on Friday to see how his levels are doing. We still have to figure out the timing of the next course of chemo. Ben is going away to the Double H Hole in the Woods camp July 20th -25th and we don't want the chemo to impact his experience. It looks like he may be going from the camp to the hospital to start his next 3 weeks of treatments. He is looking forward to camp so much. It will be a great time for him. We are going to get him an inexpensive digital camera to bring with him to take all the pics he wants. We were afraid that James would be upset that Ben was getting to go to the caamp and he wasn't. He understands that it is only for kids who have the illnesses. James is looking forward to just spending time with us. We had promised to try to find him a science camp to go to for a week. We never were able to fit one into the schedule. I am thinking about trying to do a mini science camp with him while Ben is at Double H.

7/10/2007

  The boys are having a great time with the pool. I think they managed to get into it twice today. It is really hot and humid out here so if we didn't have the pool I don't think they would be getting out much at all. It is so wonderful to hear them laugh and see them cooling off. We may need to get a new video camera so we can record more of the fun they are having. We have been getting agreat deal of photos and some video using our cameras, but, they don't really capture the sound well. I have to find the time to put the pics togother into slideshows for hear and maybe a couple more things on youtube.

                                  

   Ben's blood counts are dropping as we expected. He is tiring out more easily and has been falling asleep on the couch. He hasn't hasd a fever so we aren't too concerned. We found out today that his platelet count which should be at least 130,000 is only 22,000. It isn't low enough to require a transfusion, but, it is close. He will be going back in on Wednesday and he is scheduled to receive a platelet transfusion. His other blood counts are low, but, they may not require a transfusion. We will find out on Wednesday.  When he goes in to the hospital on Wednesday it will be for an outpatient transfusion. He will get a finger stick to draw blood to check his levels then we will go to the clinic to talk with Dr Pearce and wait for the results and then off to the unit that performs the outpatient transfusions. They are really nice folks there too. I must say we really feel like we are in good hands at Albany Medical Center. Ben hates the finger sticks. He has arrived at the point where he will accept them with out giving us trouble. It doesn't sound like a big deal for most of us. I was thinking about it the other day and realized that he has had more finger sticks for blood tests than I have had in my lifetime. When I add up the medical things that have happened to him it is pretty amazing. He is amazing. I don't think I could do what he has been doing with as much grace, strength and courage.

7/8/2007

  Today was a great day. We had a nice lazy morning and the boys went for a quick swim (dunk) in the pool. They played around in there for about 45 minutes. The we went to Crossgates Mall to the Regal Cinemas. The Starlight Starbright Foundation was treating the kids facing potentially life threatening conditions and their families with a trip to see Ratatouille. What a wonderful organization. Their presence in the Albany area is new. The woman in charge of the Albany Chapter recently moved here from Long Island. She had been a volunteer with the organization there and realized there was no chapter here. She is a really nice woman and has hit the ground running. I think they have hosted 3 events so far. They even covered the popcorn. When I walked into the theatre with the popcorn and drinks it was already dark. I picked just the wrong/right moment to enter. It was at one of those points between previews and movie when the screen goes totally blank for a second. Just before it went completely black I see a 4 ft tall figure charging me shouting, "Ben's Dad!!" As everything darkens and I am balancing a large popcorn and three good sized drinks on a flimsy paperboard carrying tray a feel two small arms wrap around me with a bear hug. It hapeened so fast that I am actually receiving the hug when I realize exactly who is hugging me. As the screen lights up the room again I see Kyleah standing there we quickly exchange greeting and I point to where the rest of our family is sitting. She runs over and greets everyone which such love and tenderness. Her focus is not the short that is about to start before the movie. Her focus is my family and Benjamin in particular. No one ion the theatre grumbles that the entertainment is about to start. These 2 bald children are exchanging a loving embrace and loudly telling each other how great it is not to be in a hospital and see each other. It only takes a couple of seconds and everyone manages to get seated at the exact moment the actual film short starts. We all only missed part of the credits. The movie was great, but, for me the best part was seeing Ben, James, Kyleah and the other children interact in a "normal" environment. The Starlight Starbright Foundation has a new admirer. Shaina from the Starlight Starbright Children's Foundation is one of my new hero's.

7/7/2007

    The only things that really raise my blood pressure lately involve health insurance and some issues at work. We had an issue with our prescription insurance this past week. There is a particular shot that Ben has to receive within a certain timeframe after chemotherapy for it to be most effective. I called our insurance company on Tuesday to see if I needed to fax them the prescription in order to insure we had the drug to give him on Thursday morning. The representative told me no, that we could just go to the pharmacy and pick it up. On thursday morning Stacey and Ben went to the Albany Med pharmacy to pick up his drug and was told the insurance company denied the prescription. I called the insurance company and they said that the pharmacy had tried to put it in under James' name. It seems there may be an issue because of the identical birthdates. The insurance agency told me to have the pharmacy resubmit. The pharmacy tried and it was denied again. The pharmacist spent over 45 minutes on the phone trying to get them to cover it. Stacey called me back and I called both my employers HR and the insurance company to see what the issue was. The insurance company representative told me that it appears that Neulasta is in a class of drugs considered to be a "controlled substance, you know like marijuana" and requires not only the insurance company to approve it, but, they also have to get approval from my employer. At one point I had HR on my cell phone in one ear and the insurance company on my desk phone in the other ear. So healthcare decisions are not only being made by us and our doctors, nurses, hospitals, but, by insurance companies and our employers. I think the class of drugs it is in is expensive and the only ones wanting to control it are the insurance companies and employers. We are following a standard course of treatment so there are no real surprises in the requests we are making for Benjamin's treatments. Thank God the pharmacist and her bosses at Albany Medical Center are compassionate. They gave us the drug with us paying only the normal co-pay. We still don't know who is going to end up paying for the shot. It's about $1800. Because of the community support we have received we have enough money in the bank to cover it. On this 7-7-7 day we realize our good fortune in having all of you who have been there everytime we have needed something. It is because of your generosity and support that we have not had to worry whether or not Ben would get the care he needs. Whether it has been drugs or physical therapy.

                    

Thank you, Thank you, Thank you.

7/4/2007

   We came home from the hospital last night. I brought James to Noogieland right around 6 pm and then went from there to help bring Ben home. He was thrilled to be getting out of there. He doesn't complain about being in the hospital. You can tell he isn't thrilled though. We see him get lost in cartoons and computer games. It isn't surprising I have seen adults do the same thing when they were confined. Usually the first question out of his mouth in the morning is, "What's happening today at 2:30?" He is of course refering to the afternoon activity in the playroom. The kids wait with such anticipation for that. They also love it when there are volunteers in the playroom to play games and do crafts. Anything to break up the monotony of being in the hospital.

            

   Now we are home and everyone is chomping at the bit to do something. I am working on getting the pool up and running. We had a great work crew over here and the did a fantastic job moving the cirt. I tried filing it yesterday and the pad of sand we set up was a little crooked so it fell off the pad. I have drained the pool and releveled it so it is time to start filling it up again. Everyone is in great spirits. Happy 4th of July and we will not be watching fireworks from the hospital windows.  

7/2/2007

    Today was an unevenful day of chemoherapy for Benjamin. He is tolerating it very well this time around. They checked his blood counts today and were concerned about his platelet count. It was 144,000, the low part of the normal range is 130,000 so he is doing really well. We are expecting to get out of here tomorrow, Juky 3rd, around 9pm. He will be very happy to get home. I must admit I am looking forward to sleeping in my own bed.

    On an impulse I left work for lunch today and instead of getting a bite to eat I went to AAA to talk to a travel agent. We have been talking about going to Disney World when this is over. We are anticipating that Ben will finish up his chemotherapy treatments sometime in August or early September. I worked with the Sue at AAA in Troy and put together a trip from 9/21-9/30. We are going to stay at the Carribean Beach resort. Disney has a discount offer for that week that includes the Disney Meal Plan and Park Hopper Passes. After setting it up I was talking to the ravel Agent about Ben and realized as I was telling his story that we will be in Disney World on September 25th - the anniversary of his diagnosis. We will be at the "Happiest Place" on Earth exactly 1 year after the scariest day of our lives. I can't wait to hear the boys laughter on the trip. I still have to arrange the plane flights. Sue suggested that we make sure the Disney folks know Ben's story before we arrive. She also offered to help set up a few character breakfasts/lunches/dinners.

    Last year we bought one of those swimming pools with the blow up ring. It is 16' across and about 3 1/2' deep. We ordered a couple of yards of sand to make a bed for it and I started moving the sand trying to get it set up for the 4th. One of our friends Mary Theresa heard about my efforts and offerred to put together a work party. She showed up with 4 other friends and we put it together in a little over an hour. It took closer to 2 1/2 hours because there was wine and food to consume. We need to do more entertaining like that...without the work part. It was really wonderful just hanging with friends. I can't remember the last time we were able to do that. Unfortunately, Ben and Stacey were here in the hospital, but, we will do it again soon.

7/1/2007

   Today is the 1st of July. I am sitting in the hospital on one of their computers. I was just sitting in Ben's room and watched as a beautiful young woman walked past his room. I didn't see her come onto the floor. She looked like she had just started her day, maybe went for a quick run and came to visit someone. She may have several errands to run and she had most likely stayed longer than she thought she would. As she was heading rapidly toward the double doors to leave I saw something special in her countenance. She appeared strong and vulnerable at the same time. She was wiping away a tear as with a simple gesture. Her face showed love and concern, not grief. It was what I have decided to call a warriors tear. They are not tears of grief. They are tears of strength, compassion. They are tears of love. I do not know who she was visiting or why. I do know she is loves and is loved. I do know the source of her tear.

                

   The following poem was written by Benjamin with his art therapist. They are completely his words and sentences. He dictated them to her as he created them from words he had written on individual, torn scraps of paper. He dictated the poem to her. It is called a mixed up words poem.

me and you

in

Rain main

He and Her

Leet

Meet

Six, Five

Foot, Feet

Six Feet

Five Feet

me and Her Go Home

He meets Her

6/30/2007

    Well, we went in on Thursday night right after Vacation Bible School was over. We arrived right around 9 pm. Ben and I settled into our favorite room - D726. It is the largest room and it is a single. No room mate and lots of room. Ben was accessed and fluids were started. He would start chemo Friday morning. We both went to sleep. The first night when he geets fluids is usually the only night I sleep well. At 2:30 in the mroning they woke me up to tell me we would be moving they needed the room. It seems a baby was coming from another hospital. It is the only room on the floor that can be set up as a negative pressure room for immunocompromised patients. It can serve as an isolation room. Ben slept as they moved his bed. He woke up a little when they hit the door jam on the room we were moved to, D721, and then he went right back to sleep. We'll probably be there the whole stay. Ben should be coming home on July 3rd. We actually were half hoping to be in on the 4th because they have a great view of the fireworks at the Empire State Plaza. Our room doesn't have a view, but, there are other great viewing sites. I think we would all rather be home anyway. We have had the young man who is in our room as a room mate before and he is a good room mate. He is battling a different type of sarcoma and appears to be doing well. He is older and really hates being in the hospital.

                        

Yesterday was uneventful. James came with me to work in the afternoon and told me how much he enjoys coming to work with me. I must admit I like it too. As long as I have a computer game to occupy him from time to time. Today James and I went to the picnic and trophy ceremony for Little League. It was wonderful to celebrate the accomplishments of the children. I have a few extra trophies to deliver because many of the kids weren't therre. Ben is looking forward to getting his trophy. James picked it up for him.

I am on my way to the hospital soon. James wants me to add some jokes to his page before I go. I am picking up some dinner for the Mom of one of the other patients. She is having a Wnedy's craving. Her daughter is fighting Neuroblastoma. Neuroblastoma is a cancer of the nerves and it can be very tenacious. They will do a surgery to remove the tumors and it will pop up on another nerve or grow back. It is hard not to call these diseases evil. Ila Jean is doing well right now. They have to travel to NYC for some of her treatments. We are so lucky to be able to stay local. Please add her and her family to your prayers.

6/27/2007

  Ben and James have been going to Vacation Bible School each night this week. Last night when we arrived home the first thing Ben said to me was,"We missed Noogieland!!" James immediately echoed his disappointment. I asked them if they were enjoying VBS and they both exclaimed,"Yes!!" So I pointed out that Noogieland was every week, but, VBS was only once a year. Everyone was happy once again. I like the easy problems.

            

  We are still scheduled to start the chemo after after Vacation Bible School is over on thursday. Ben came home from the last clinic visit with a stop watch. I was very confused. I asked him where it cam from. A few visits back Ben began critiquing the nurses and their ability to acces him quickly and painlessly. It seems they all have the painless part down. I think daddy's application of numbing cream helps there. Some are faster than others. He often counts and then comments on who was faster. At least one of the nurses decided it was time for Ben to have an official way to time who was faster so they presented him with a stopwatch to time each of them. He is very proud of it and is looking forward to establishing their standings. It also seems there may be some competition not only between individuals, but, between the clinic nurses and the pediatric floor nurses. I advised him that he should only remind them how well they are doing after the needle is inserted.

                            

  I have a favor to ask of you. Benjamin and James really love the Drake and Josh Show. They have been watching it for a while now. When they were very small and could only write their names they sat down and both "wrote" letters inviting them to our house and asking if they could come visit. Ben has talked about including meeting them into his Make-A-Wish wish. Drake Bell from the show is a musician and is coming to SPAC this year - Next Fest 2007 on August 24th. Through my employer and a wonderful woman named Judy (Thank You Judy!!!) I was able to get seats in the 2nd row center stage for the concert. Here is the favor part. Does anyone have any idea how I could get Ben and James a chance to meet Drake Bell before or after the concert? Backstage passes? Anything? Do you have contacts at SPAC? Local Radio/TV Station? Nickelodeon? Any leads would be greatly appreciated. I have not even told them we have the tickets. I am open for absolutely any suggestions.

                    

  We have started creating the Green Drakkoman Foundation and have started a couple projects with it. I have set up the web site and it can be found at http://www.greendrakkoman.org/. We have also set up a storefront to sell some Green Drakkoman items to help establish it. We only have a few items on it at this time. You can check it out at http://www.cafepress.com/greendrakkoman. If you have any trouble getting to either site please let me know. If anyone has experience forming Not For Profits or wishes to assist us in its' creation or mission please send us and email.

6/25/2007

  We arrived at Albany Med on Friday night settled ourselves in for at least the next 5 days. Ben's port-o-cath was accessed, blood was drawn, food was put in the fridge, Ben's favorite stuffed animals and bedding was put on the bed and we went to sleep. Saturday morning blood at 6am was drawn again. It showed that Ben had a low platelet count. At 10 am the weekend attending physician, Dr Nepo, had more blood drawn and tested. It confirmed that Ben's platelet count had dropped drastically over the last couple of days and that it was too low for him to receive the chemo. Dr Pearce made a statement to Dr Nepo about the methotrexate finally catching up to him. We had never seen the methetrexate affect Ben's blood counts before as a side effect. It seems like just when you think you have a routine and know how the body will react to the treatments something changes. I guess we always have to be on our toes and expect anything to happen. I was reminded of when Stacey was pregnant for the boys. Because she was carrying twins and it was difficult we saw the doctor a great deal more than in a normal pregnancy. She would have some weird thing happen or symptom and then the opposite. We would go to the doctor and ask him about it. He was wonderful and in a kind way would say, "Sometimes we see that happen in a pregnant woman. It is nothing to be worried about yet." It seems in treating cancer patients the same situation is true. Although we have never been told this by any of Ben's doctors in the back of my mind I find myself saying, "Sometimes we see this happen in a cancer patient. It is nothing to be worried about yet." I trust our doctors completely. They answer all of our questions and are indeed looking out for Ben's best interests. We do not trust blindly. We trust, but, verify and are very pleased with the hands we have placed one of our greatest treasures.

            

   So we were sent home Saturday before Noon. We will be going to the clinic today or tomorrow to see how his counts are and hope to get him in there as soon as possible. We need to stay on track as best we can to make sure he gets to camp and to keep him within the standard protocol. I will do an updat later or tomorrow about what we did instead over the weekend and about Vacation Bible School which starts tonight. Suffice it say that Ben is doing great and the rest of us are doing well also. I have said it many time in peson to people, if we have to be in this stream or river, at leasst we are standing on a good rock.

6/20/2007

   Over the last few weeks Ben has been receiving methotrexate. He was tan and running around as active as could be. On Monday afternoon I noticed what looked like a cross between sunburn and bruoses on his forearms and his checks were getting quite red. Tuesday morning when he was getting ready for school Stacey saw the same things and said something to me about them. Since he had a clinic appointment on Wednesday and he was in great spirits we didn't think it was of much concern. At the clinic appointment on Wednesday Dr Pearce took one lokk at him and said that the methotrexate had made him extra sensative to the sun. His skin was breaking down from the sun. Everyone had been saying how good he looked and telling him that he must have been spending a great deal of time outdoors. He would respond by saying,"No, I keep getting darker and darker indoors." If he was going out for extended lengths of time we had been putting sun screen on, but, not for incidental activities. He tells us that it never felt like he had a sunburn. In fact he never complained at all. We had to ask about it. Now he has to stay out of the sun as much as possible and wear a hat and spf 50 sunscreen. We have seen a rapid improvement of his skin and there will be no long term effect from it. It never really was a sunburn...very stange indeed. It also seemed to go from a nice tan to skin breaking down overnight. We will be going into the hospital for a 5 day chemo treatment on Firday night. Ben is actually looking forward to it so he can get it over with before his trip to the Double H Hole in the Woods Camp.

 

6/15/2007

   Today Ben went to Albany Medical Center to start his methotrexate weekend. They were doing a Father's Day project at school and Ben was extremely concerned that because he was leaving early he would miss it or not have time to complete it. His teacher said he was very insistant that he get time to work on it. She promised to make sure he would get it done. When I cam home from work to take him to the hospital he handed me the project with such a proud smile on his face. He was absolutely beside himself as I looked at it and read it out loud.

Top 10 Things About Dad

10.   He is my coach.

9.     He updates my web site.

8.    He types my stories on Green Drakkoman.

7.    He makes puppet shows with me.

6.    He brings me to hockey games.

5.    He brought me a big pack of hockey cards.

4.    He sprayed me with water.

3.    He acted like my mom.

2.    He signed me up for chess on line.

1.    He loves me!

6/8/2007

  It has really been a great week around our house. The other morning we were all fooling around as our day was starting. The boys just seemed in a crazy mood. Dancing, chasing each other, taunting and wrestling. I must admit I was participating a little as well. All of a sudden I detached from the play and realized the boys were laughing. I knew they were laughing and giggling, but, for a little while a part of my brain or maybe my heart stepped out of the situation and marvelled at how awesome and special the moment the was. These 2 little boys had absolutely no cares in the world. The were experiencing joy at a level adults normally only wish they could experience. I number myself amongst the adults. Our children invite us into their world over and over again and how many times do we turn down the invitation so we can do a little more work in the office, read our paper, mow the lawn or watch our program. I am guilty of this myself. I spend way to much time, effort and energy on things that in the long run will not matter. Play with your children, your nieces or nephews, your grandkids, your friends kids and do on their level. Let them direct the play completely and follow their lead. Even for a little while and you will see and experience absolute magic and joy. When you see me being a stick in the mud and whining about being old and ired remind me of these words.

                   

  Ben goes into the hospital today for his next chemotherapy treatment. We will be in all weekend and then next weekend for the same drugs. Following that he will get a 5-day treatment that is the cocktail that really throws him for a loop. The methatrexate he will be receiving this week and next usually doesn't mess him up too badly. He feels a little bad when he is actually getting it, but, then he is back to his normal self by monday or tuesday. As long as he doesn't develop the mouth sores again. It has been a while since we were in the hospital so it will be interesting to see how it feels walking in. It seems crazy to me that after only a few weeks away from the hospital I am typing such things.

      

  The hospital is supposed to have wireless internet access in the rooms now. I will be testing it out this weekend. We'll see how it goes. Hopefully it will be easier to update the web site while we are in there. I am sure it will be. I met the man who is charge of the technology and he asked me to let him know what I think of it and test it out. Now if we can just get comfortable sleeping chairs there. We have heard a great many tales about peoples experiences in hospitals since this all began. We signed up for a couple email lists and check others web sites regularly. So many people have stories of nasty things happening and bad conditions and here I am complaining about the chairs. I need a smack in the head...there I took care of it. We arre so lucky, blessed, whatever you want to call it to have the Children's Hospital at AMC so close to us. It's not the chair that matters...it's the CARE that matters.

6/2/2007

  

  Everything has been wonderfully normal for the las few days. We had a baseball game and Ben hit the ball twice. He hit a single and then a sacrifice play that resulted in a run being scored. He actually hit in 2 runs. It is amazing to see him swing the bat. He is getting better and better and his swing is getting closer and closer to normal.

     

  We went to see Dr Decaprio yesterday. Ben's arm was x-rayed and he examined Ben. The x-rays were great. Dr DeCaprio looked everything over and pointed out the new growth where Ben's bone meets the allograft. He told us that basically Ben's arm was healed. Ben can be as active as he wants and we will keep an eye the bone density of the allograft. He told us that the real critical point will be about 3 years from now. That is when there is greatest danger of the allograft breaking done. Ben started full blown physical therapy this past week. Actually it was an evaluation/orientation visit. He will be going twice a week and doing exercises in a swimming pool as well as gym type facility. Ben is really looking forward to it.

              

  My Mom has come up from Florida to stay with us. It is really great to have her here. Having here helps us keep James' life more normal. If we are at the hospital James doesn't have to come too or have his day disrupted.

          

  A local radio station is having a radiothon for the Children's Hospital at Albany Medical Center. You may remember they taped an interview with Ben. I was driving to work after a dentist appointment yesterday and was able to here the interview it was really great. We have been listening to the radiothon ever since hoping to hear the interview again. Ben really wants to hear it. If we don't I'm going to see about getting a recording from the radio station. Ben has enjoyed hearing the stories of the other kids and the doctors, nurses and staff that he knows. One of the stories we heard did not have a happy ending. We were on our way to see Dr DeCaprio. I realized where the story was headed as soon as it started. I turned down the radio and started talking to him to distract him. He responded by asking me to turn the radio back up. He wanted to here it. The young girl had a brain tumor. He realized where it was headed soon after our exchange and said,"She's already dead isn't she." Stacey said,"Yes, she is but she had a different type of cancer than yours." He said,"I know and I'm not going to die." We all agreed. It is through interchanges like this that we know Ben understands the gravity of his situation. He remains so incredibly positive and happy. At 6 years old he has faced his own mortality and is moving on.

5/26/2007

  It has been really wonderful around here. James and Ben have ridden their bikes to and from school the last 3 days. The weather has been beautiful and they really enjoy riding. They still have training wheels on their bikes. They pull up with the big kids and everyone puts their bikes in the bike rack. James and Ben pruodly take off their helmets as they walk into the school. Throughout the week other parents of some of the young kids have commented how their kids don't want to ride their bike to school because they are still using the training wheels. Our kids don't care and the older kids don't care either. As james and Ben are riding other kids are passing them on their own bikes saying things like, "Hey Ben," "Nice to see you guys riding." I haven't heard anyone say anything that wasn't supportive.

                      

  Today they went to a Birthday Party. It was held at at a fitness fun place so their was a great deal of running around, a ball pit, kid climbing wall, trampoline and some other equipment. Everyone had a great time. Somebody else's kid was the first to cry. Somebody, not one of ours, jumped into the ball pit and landed on him. It truly was fun to watch them all have a great time. I could never work there, it was more chaotic than Chuck E. Cheese. After the cake there was one final thing to do. They have a zip line that goes from one end of the room to the other. It was probably 80 feet long and the platform you started on was about 4 feet off the ground. If you are unfamiliar with a zip line here is a description. It is a cable that is stretched somewhat tightly between 2 points in a slope. There is a pulley on top of the line with a handle attached below it. You hang onto the handle and the pulley glides down the cable to the other end. The handle was T shaped so it required the user to hold onto it with both hands to suspend themselves. I watched as the kids did it and knew that Ben had his heart set on doing it too. He climbed up on the platform and reached up and grabbed the handle with his left hand. He tried to lift his right over his head to the handle, but, couldn't. He let go of the left hand and tried again to raise his right, helping it along with his left. It wouldn't reach. I knew he wasn't going to be able to grab the handle with both hands so I had already approached the platform. When he coudn't reach the handle with his right arm on the second try he started to lower both hands and I could see a great disappointing look start to form on his face. I stepped up to the platform and told the young woman I would help him. She stepped aside and I told him to grab the bar with his left hand as close to the center as possible. He grabbed with all his might and I lifeted his legs of the platform and ran along down the path of the zip line. Lowering him as we went. I swear he was weightless. He had to be carryijng most of his weight using just his left arm. As we reached the lower part of the zip line his feet hit the floor and he landed. The kids were cheering and the parents were too. I let him run back to his friends and went back behind the counter to the area the parents were waiting in. One of them immediately told me that Ben was absolutely beaming as he went down the line.

5/24/2007

   On Tuesday Ben and James were presented with quilts from a group of quilters that meet every week at Gilda's Club. One of them also volunteers with the Noogieland program. They are absolutely beautiful. James' has a baseball motif and Benjamin's is covered with the closest thing to Green Drakkoman they could find. Ben has used it every night this week. Speaking of using something all the time. Ben has been wearing the T-shirts that Ed Ruping collected from several Fire Companies in Florida and Germany every day to school for the last few weeks. I'm glad he sent enough to get through a week. Thank you again Ed...Benjamin is really proud of his firefighter friends. I heard him telling the story of the Schenectady Fire Department sending a truck to Ellis Hospital with at least one firefighter from each station after his surgery there. That is one of the moments from this whole experience so far that I will never forget. The look on Ben's face was awesome.

                    

  At the clinic visit this week Dr Pearce told us that we are to have fun before the next round of chemo starts. So we are going to be following Dr.'s orders until June 8th. June is not going to be a fun month. Ben is going to be receiving chemo Albany Med for 3 weeks in a row starting on June 9th. The first 2 weeks he will be getting Methatrexate. That is the one that he gets one day and the rest of the stay he will get rescue drugs to clean it out of his system. Usually a 3-night, 3-day, stay and the last few times he has tolerated it very well. The third week is the Ifosfomide cocktail for 5 days. After he finishes that one we will be home. The Ifosfomide treatment is the one that really messes with his blood counts. The methatrexate is the one that caused the horrible mouth sores. Since those mouth sores it has been easier to get him to take the Glutamine that helps suppress them.

            

  I have borrowed a projector so this weekend we are going to have a backyard Drive In movie night. I am not sure what is going to be playing. We are also going to some work around the house and catch up on the things that we have not been able to do lately. We are almost caught up with our yard work.

           

  Ben is looking forward to the remaining baseball games. James is still deciding how much he likes to play baseball. He seems more interested in Baseball cards. By the way it was really fun to watch Ben bargain with James to trade a David Ortiz card. It sounded like they were really doing a major league trade. It took several days too because one of them would walk away from the bargaining table. I am still not sure exactly what the final trade was, but, they were both happy.

             

  The schedule for the remaining Colonie PBA Minors Team is as follows:

Wed 5/30  -   Sat 6/2  -  Tue 6/5  -  Tue  6/12     All of the games are at 6 pm.

  The fields are just off route 7, the driveway is right next Valoze's Greenhouse at the stop light. If you need better directions they can be found at www.ncyba.com if you can make a game it is pretty fun to watch. We play 3 innings or 2 hours whichever comes first. It usually takes about an hour and a half to  finish the game. We actually have a pretty good team. Quite a few of the kids can hit the ball so we are an offensive team. Games with a lot of hits are more exciting. One of the dads was telling every player as they came up to bat that he would give them a dollar if they could hit the fence. One of the boys actually did it so he had to go get a dollar from his wife to give the boy.

   

   

5/21/2007

  

  I'm sorry I left you all in such a lurch. I didn't actually realize the cliff hanger I left you all in. It has been very hectic around here. Ben came home in time for the Discovery Fair. His project on the Dangerous animals of the African Bush - Elephant, Rhinoceros, Cape Buffalo and Hippopotamus - was very well received. James' project was an erupting volcano made out plaster powered by a mixture of baking soda, vinegar, food coloring and a dash of dishwashing detergent. As Ben said,"James' display was the most popular." I think it was because he insisted on having little people to get engulfed in the lava. Stacey became sick right after we came home. She managed to get out of bed to help us finish the display boards with her special scrapbooking tools, but, ended up pretty much bed ridden the rest of the week. We think it may have been some sort of food poisoning. None of us caught whatever it was and with Ben's counts he should have. During the week we had clinic appointments, IV drugs, school, baseball and work. I took Wed - Fri off to get everything done. Today I registered for Family & Medical Leave with my employer. I was advised that even though my abscences should be intermittent (less than 3 days at a time) I needed to register to make sure my job would be protected. Because I am not actually using it I have to update it every 30 days. Most of the time until now I have only missed an hour or 2 here and there and frankly usually more than made up the time at home and after hours.

                       

  Everyone is healthy now and we are back to normal. In fact Ben went to clinic today and his counts are perfectly normal. His scans looked good too. He and James both played in their Little League game tonight. The both hit the ball and managed to get on base at least once. It is coach pitch and off the tee so everyone is assured of hitting the ball. They still have to get to the base on time though because an out is an out and they have to sit down if they are out. Of course we don't count the outs yet. I am the coach so that makes me the pitcher. Each kid gets 6 - 10 pitches and there are usually 10 of the 15 kids there. We play for 3 innings so that adds up to 200-300 pitches unless they are all hitting well and that doesn't happen. My throwing arm is improving. Ben made a play at 3rd base to get a runner out. James also managed to make a play at 2nd base and get a runner out. Overall it was a great game. Dr Decaprio keeps asking for the schedule so he can come to a game. Ben does an amazing job swinging the bat. Most of the parents who don't know him think he swings only slightly spasticly and wonder why the parents on our team and who know him cheer at every swing. Everything went well until it came time for the 2 teams to walk past each other congratulating the other team for a "good game." The other kids didn't know Ben's story and when he went down the line one of the kids slapped Ben's right hand with a congratulatory low-high five. When he did it hurt Ben a little and he said,"Ow." The next kid thought it was funny and said nice sound and hit Ben's hand even harder before Ben could pull his hand away. Ben started crying and ran to the side with me chasing after him. I think it mostly scared him. I checked everything out and the pain went away as rapidly as it came on. All of the parents on our team reacted really well. They took over my end of game duties and distracted James. The parents did a great job of taking over for me.

                       

  I think the main reason I didn't update the web site was I hit a point where I was just sick of this whole thing. Writing about everything is wonderful because it is an outlet to share the negative things and by sharing the positive things it makes me realize there really is more positive than negative. It also reminds me that the world is still turning and there really are normal things happening. Watching Ben swing that bat tonight and realizing that it wasn't that much different than many of the other kids and better than a few of them on either team. Seeing the magic in the kids eyes when they connect with the ball is wonderul. Ben celebrates every swing. He really does. It is very cool to watch. I will post the remaining schedule on here tomorrow.

 

5/10/2007

   Ben is doing pretty well. We were visited this morning by and Ear Nose and Throat Doctor and his team who reviewed Ben's CT scans with our Oncologists. The good news is that although his sinuses are filled. It looks like there is some drainage. It also looks like there is no bone damage so that means he doesn't have a fungal infection. Normally our immune systems keep these things from getting out of control. Ben's was pretty well compromised, but, not completely. Although his counts are still low across the board they are improving. Today he was able to go to the activity room and do some projects with a mask on. He also was able to go outside and blow bubbles with his Mom and one of the Child Life specialists. I think a couple of other kids went to. He also wanted to go and check out a new Starbucks that is in the Hilton Garden Inn they have built across the street from the hospital. The ENT Doctor and his team were going to take samples of the infection to culture them. It will take a couple of days to get the results back. Anyone who has had a Sinus infection will tell you they are a pain and they are hard to treat. Ben also still has pneumonia in his left lung. They think the pneumonia is viral. They doctors all think there is a very strong chance he will be coming home on Sunday. We will have to give him IV antibiotics next week at home. He and James are amazing. They really are troopers and are putting up with a great deal child life interruptions. We have to work on their Discovery Fair projects. The Discovery Fair at their school is on 5/15. I keep telling Ben he can be his own project.

5/9/2007

   Ben has been in the hospital for the last 4 days. He spiked a fever Saturday night and came into our bed crying from an ear ache. I have been doing the overnights and Stacey has been spending the days there. Unfortunately I can't update the web site from the hospital and I have not been able to get the time during the day to make any updates. I think I have to teach somebody else to help with updates. Any free moment we have been having we have been trying to keep James' life as normal as possible. Ben's fevers have been as high as 104.6 degres. They are spiking lower and lower. Today's high so far was 100.6. He will have to be in at least 48 hours after his last spike. His blood counts are really low although they are up a little. His hemoglobin count is half of the lowest number in the normal range. His platelet count is about 1/4 of the lowest number in the normal range. He has a neutraphil count of 0. It should be 1500. He has pneumonia in his lower left lung and is being treated with anti biotics and antifungals even though his blood cultures have come back negative. They think it may be viral. The good news is that his fevers are not as high, as often and as long lasting as they were when we went in. Stacey and I have been feeling guilty because we have been trying to fit a great deal of life in the times between chemotherapy treatments. We have been letting him go to school, play baseball and basically be an active 6 year old. We asked the Doctors if we were doing the wrong thing. Basically they told us no and in fact by giving him as much of a normal life as possible we were benefitting him and that there was nothing we could do about his blood counts and it is better for him to be as much of a 6 year old as possible. They are doing additional blood tests today to see how his antibodies function and also doing a CT scan of his sinuses. Tomorrow is my birthday and it looks like we will be at Albany Med for it. We were there for Stacey's birthday in April.

                    

   On a lighter nots James informed me the other day that I have become very cranky. "Daddy, you are crankier than I have ever seen you. You need to go on a vacation. You should go away from work to DisneyLand." I asked,"Should I bring Mommy and you and Ben." I expected he would say just him. He said,"No, just you...you really need it." After this interchange I have been very aware of my crankiness and have tried to mend my ways. Then this morning Stacey says to me,"So when are you going to go get a massage."

                 

  Today a friend sent me a link to web site for a little boy fighting Leukemia (ALL) in Canada. His 8th birthday is May 30th. He wants to receive as many birthday cards as possible. You know me I always chack these things out to see if they are hoaxes. It is legitimate. I know what I would do if Ben asked for the same thing. Here is the link to his web site - http://www.shaneswish.com/index.php Please do what your heart tells you to do.

                        

  A while back I talked about a Mom, Mary Lou, who is a complete and total inspiration and hero to us. Her son Bryan was diagnosed around the age of 4 with Neuroblastoma almost 10 years ago. During that time he has been a warrior. He has prbably had every treatment for Neuroblastom tried on him. He has been a star for the medical community and I am sure the things that this courageous young man of 14 has taught the the doctors and researchers have and will save lives. We have seen that he has been surrounded by an amazing and loving community and family similarly to Benjamin. His mother is an example of pure love. We just met Bryan last October when he and Ben were room mates at Albany med. He and Ben talked about snow boarding. Benjamin and he discussed snow baording lessons next winter. Bryan would teach him to snowbaord. Bryan passed away yesterday when a bacterial infection took advantage of his weakened immune system. He was in the middle of the newest experimental treatment available and it was working. To see the impact Bryan has had on others read this blog created by a good friend of his and his caring bridge site URL.

http://www.inkednation.com/r/r.cfm?t=42&DisplayUser_ID=98686&log_ID=25887

http://www.caringbridge.org/ny/bryan/index.htm

                     

5/5/2007

  I am not sure why I seem to only be able to do updates haphazzardly these days. Ben is doing really well. In fact we just came from Chuck E. Cheese and the boys have a coach pitch little league game at 4 pm. We are hoping to go to see Spiderman 3 at the drive-in movies tonight. We did have nice lazy morning this morning. Although I did mow the front lawn. Ben tolerated his chemo really well and his counts were good after leaving the hospital. He seems fine today. I am hoping he stays that way this week. I have to travel for my job this week. I am not looking forward to being away from everyone for several days. The rest of the family seems ok, but, I think my stress level is through the roof. I have found myself snapping at Stace and the boys. I think I may start running again or maybe more massages. The company I work for merged with another and the insurance plans have changed. I can tell you one thing I have learned about health insurance. Don't change plans and insurance companies in the middle of childhood cancer treatments. We thought we had our first one down pat and although there were some minor difficulties and co pays to worry about it rapidly became manageable. The new insurance coverage is maddening. We have been on the phone almost daily with either the HR department at my employer, the prescription plan insurance company, the health insurance company, or the hospital to iron something out about payments. I guess I really can't complain too much at least we have insurance and most of the bugs will get ironed out. A few of them have been because Ben and James are twins. We find it amazing that the insurance companies don't seem to think people have more than one baby at a time. I could understand it a little better if it was a car insurance company, but, the health insurance companies pay for the births.

                         

  Ben is really looking forward to this summer. He will be going to the Double H Hole in the Woods summer camp for kids with life threatening and chronic illnesses. Based on what we are hearing it is going to be absolutely wonderful for him. In fact his birthday will be in the middle of his stay. He will be there for 6 days. It looks like his favorite nurse is working there that week. It is so wonderful that these places and programs exist for these kids.

4/29/2007

      On Friday when I was driving Ben to the hospital to start this round of chemo he was staring out the window of the car. I could tell he was really deep in thought about something. He looked rather concerned about something. I turned off the radio and asked him what he was thinking about. He told me, "Nothing." i pushed thinking he was getting sick of the trip to the hospital. I said,"You know this road really well don't you." He simply said, "Yes." I pushed some more to get him te tell me what was troubling him. He finally said,"I have to finish my report on Polar Bears. It's due on Monday." I told him we work on it over the weekend. In avery dejected voice he told me he couldn't because he left his Polar Bear facts in school. I pointed out that he wasn't going to be in school on Monday and that I thought his teacher would forgive him. I'll pick up his fact sheet tomorrow and we can work on it.

     

    He has been doing really well. He is tolerating the chemo very weel. The drugs he is receiving right now didn't have a negative effect until a few days after he stopped receiving them. They really messed up his blood counts. His spirits are really high and he has enjoyed the visitors that came over the weekend. It's tough for him because when he is receiving the chemo drugs he isn't supposed to leave his room.

         

  

   4/26/2007

  Benjamin is doing great. He has been going to school all week. and yesterday sang at student assembly with all of his classmates. They sang about the "Family of the Planets," Sign Language alphabet and "Take Me Out to the Ballgame." It was really nice seeing him up there with them all. He was supposed to start chemo yesterday, but, we pushed it back to tomorrow so he could be at the assembly and also so he can go to Little League practice tonight. It is "Coach Pitch" baseball and most of the team is 6 years old. It should be a great season. I am the coach and both Ben and James are on the team. Believe it or not Ben is a pretty good one arm batter. We'll see how practice goes. Unfortunately Ben will miss an event that is happening on Sunday. A local Harley club, The Roemers, is having their annual Spring Ride on Sunday and they are honoring Ben and the Ben fund. He is disappointed, but, we couldn't postpone the chemo any further. The ride starts at Spitzie's Harley dealership on central avenue in Albany/Schenectady and goes to Central Park in Schenectady. I guess there will be a cookout in the Park. They have registration from 10-12 and then the ride starts. We are hoping the weather is great. They usually get around 100 motorcycles at the event. I will update everyone tomorrow on practice tonight.

               

      I have other things to put on here and all of them are positive. Ben is doing really well. Over the weekend I will write a really long update to catch everyone up. You will understand why I am having difficulty as you read the next paragraph.

       

   A while back I told you all about Ryan McCormick, the 19 month old boy fighting Neuroblastoma. I know that many of you have been praying for him and his family. I just found out a little while ago that he passed away this morning. He had been at MD Anderson for treatments and they just managed to get him back to Albany Med via a medical airflight yesterday. His whole family was able to be with him. Please hold them in your hearts today and give your children an extra hug and kiss in his honor.

    

4/17/2007

 Ben went to school today. He dressed himself without any help. He has figured out how to pull shirts on over his right arm first and then his other arm and head. He also didn't wear his sling today. He insisted on taking his newest Build-A-Bear bear to school to show everyone. It was given to him by his favorite nurse at Albany Med. She had been sick and he was very concerned about her. So he had tried to visit her and bring a get well card he made. He ended up not being able to visit so we left his card in her office for her. When he came into clinic last week she had a white bear with 4 leaf clovers all over him. A "Lucky" bear. He is dressed in a Superman costume. When we arrived at the school I offered to carry his lunch so he could carry the box with the bear in it. He turned me down. He insisted on carrying both his bear and his lunchbox. As we approached the door he went to open it by himself. I got the door for Ben and James. I watched as they walked to their respective classrooms, James slightly ahead of Ben. Both of them had their backpacks on and carried their lunchbags in their right hands and Ben carrying his Build-a-bear box in his left. Aside from Ben being completely bald it was like a scene from the first week and half of school, before this all began. They both love school so much.

                

   I just received a call from the school on my cell phone. It is unusual for them to call me. They also do a really good job of not panicing the parent when they call. Right to the point. After saying hello she said,"Benjamin has asked us to call you. He would like to participate in gym today. They are throwing balls." I told her that if he felt he was ok to do it to let him go ahead. I asked her to have his PE Teacher, "Coach," not let him run around too much, but, let him participate if Benjamin thinks he is ready. Ben has done a pretty goods job of regulating his activity level. He can throw with his left hand. I am just so amazed and impressed at the way he is handling this whole thing. I keep thinking oabout the words of Dr Pearce, "He is at a great age to have this happen." He trusts that the things we are doing are for his benefit and tolerates them. As soon as they are over and he is able he immediately wants to be a 6 year old little boy and be having the fun and life that every 6 year old deserves. He strives to come as close to it as possible and accepts however close he gets to it as far enough. If he can be there for 5 minutes and then has to rest for an hour...so be it. Watching James and the way he treats been is also magical. He treats him absolutely no differently than he did before we started on this path. I guess he does a little. He only hits him on his left arm now. He gets it. James knows that Ben is Ben and that osteosarcoma is merely something that has happened to Ben it is not who he is.Billy B., Peter L., Tyler W. and the other kids at church and at Blue Creek understand it too. I have had parents tell me that the kids ask the questions on their mind about Ben's battle and then move immediately back to Ben is Ben, he is my friend.  It seems the farther away from 6 we get the harder it is to do that. Until life, experience and time brings us back to the understanding that looking at this type of situation may be best done through 6 year old eyes.

4/16/2007

   The methatrexate levels in Ben's blood have dropped down to a low enough level that he is coming home. He will probably home within the next couple of hours. Being discharged seems to take a while. He will be receiving a rescue drug to expediate the romoval of the rest of the methatrexate. He has done very well this trip. He slept most of saturday afternoon and his coloring is a little off. He will probably not be going to school tomorrow and I am not sure when we are going back to clinic to check his blood counts. It should be some time later this week. I went to church by myself this week. Ben was in the hospital and James had a 2 night stay at his great aunts town house. Everyone at church was askingme about the boys and telling me how wonderful it was to see Ben sing last week. A couple of them hadn't read the web site and were telling me that it was wonderful to see him without the sling and they noticed he was using his right arm and even straightened it. I will update everyone on Ben's next cycle of chem when we are closer to the dates. It really is hard to schedule things because everything depends on how his body is reacting to the treatments so it is a real moving target. I may be travelling a little bit for work soon so scheduling is very much on my mind.

             

  I have been asked several times lately, "How do you do it?" The question is usually followed up by the person saying, "I could never do what you are doing or as well as you guys." As Ben's Dad I have been working on responses to these questions. I must also admit they are questions that Ben's Mom and I have discussed. I have tried the wise guy answers like "Do what?" and nobody ever gets it. I have been told for many years that I should never try to be funny. My latest answer is that "We just do what any parent would do in this situation. The best they can." We have been blessed because we caught the osteosarcoma early and Ben has handled the treatments very well. We are in excellent medical hands and have great confidence in the treatments Ben has been receiving. We also have a really good support system in place of family and friends.  Ben, James, Stacey and I have all hit times during this when  we were down, upset, fearful, worried, angry, numb or just plain "sick of it." Frankly, I find myself in a bit of a funk this week. What has helped us is we haven't stayed in the dark places for very long, sometimes only momentarily. We also haven't all been the trough at the same time. We do what family and friends do. We pick each other up and celebrate the victories not matter how small. We point out to each other the miraculous not only in our lives, but, in the world around us. When this whole thing started I looked around the Internet for help. I found the site of a woman who was a breast cancer survivor. She listed all of the things that she had done to cope. Most of them did not apply to a 6 year old boy fighting osteosarcoma. One thing she said has become a touch stone for us. She said, "Put a sign over your front door that reads - 'If you can't be positive don't come in.'" It is not easy to the be the parent, sibling, relative or friend of a person who is diagnosed with cancer or some other life threatening or altering disease. It is also not easy to be a good parent, loving sibling, caring relative or great friend period. It takes work to be any of those things. Maybe all of us just need to work harder at finding the joy that these little children show us no matter waht they face.

         

   You know, I am laughing roght now as I reread what I just typed. I was having a discussion yesterday with the Jr High Sunday School class I teach. We often talk about how the lesson of the day applies in their lives as teenagers. It can be scary for me because I encourage questions and I never know what they will ask. As part of one of my answers this week I told them, "People, especially adults,  will often tell you the things they need to hear themselves." I think I just typed the things I needed to hear.

            

4/14/2007

  Ben is in the hospital receiving his next cycle of chemotherapy. He will be receiving 2 doses of a drug called methotrexate. It is a really nasty drug. He started receiving hydrating fluids last night with sodium bicarbonate in it. The idea is to raise the pH in his body to help keep the methotrexate from damaging his bladder, liver or kidneys. He also receives several other drugs throughout the cycle to prevent these bad side effects. It is a very potent drug and has been shown to be very effective. It has been around for a while. Ben is doing really well and has tolerated this drug well in the past. He will probably be in the hospital until Tuesday. If anyone wants to visit come on down to the 7th floor. Ben continues to amaze us with the way he has been handling the treatments. James has been doing very well lately too. They are wonderful little boys.

        

  When we first came to the pediatric floor D7N at Albany Medical Center, as expected, I was not sure what I was going to find. When you enter the floor you go through a large automatic door that opens after you wave your hand in front of a sensor. We had had a tour of the floor when we were in clinic. Now we were coming in with Benjamin for the start of his treatments. As the door opened I saw a gentleman walking towards me pulling a red wagon. As I approached I could see the contents of the wagon. It was a smiling, very happy little, but large for his size, boy. It turned out he was between 3 and 4 years old. As most of you know our boys are big boys for their age and so was he. I knew at that moment that this place could be a place of great joy. The little boy's smile made feel ok about being there and told me that Benjamin was going to be in good hands. Throughout our treatments we would occassionally see him being pulled through the hallway by his relatives. Always with a big smile on his face no matter how much pain he was in. Sometimes trailing an IV tower. Today I attended this beautiful little boy's funeral. Little red wagons will forever be special in my eyes and I will carry his smile in my heart. We have not discussed this with Ben.

4/10/2007

  Ok it's already Tuesday and what a great weekend it turned out to be. On Easter Sunday Ben performed his solo with the children's choir twice in practice and in 2 seperate services. It was his very first time to sing alone in front of any audience larger than 4 family members. He did really well. It turned into more of a rap version of the verse, but, it went well. I recorded it and I'm trying to figure out how to get it out of the camera and onto the computer. When I do I will post it to youtube and put a link on here. While Ben was singing during the first service Stacey started crying a little and she leaned over to me as I choked up. She whispered to me,"Do you see that?" I replied as best I could between holding the camera and fighting back a tear,"Yes, I do." Ben had insisted on not wearing his sling to church. He has been going without it for a few hours at a time at home, but, never outside the house. He looked wonderful in his long sleeve white dress shirt and yellow power tie. Hold on to your seat Dr Decaprio. While Ben was singing and concentrating on the words and music he straightened his right arm completely by his side. In a very relaxed move it was as straight as if he had just thrown a dart. It was only for a moment and I am not sure anyone else noticed it or would even have known how special it was. He has not straightened his arm since the surgery. Not even when working with the occupational therapist. We are calling this our Easter miracle. A very small one, but, miraculous none-the-less.

                

4/7/2007

  Happy Easter!! I am writing this late at night on the 7th so you will most likely not be reading this until Easter Sunday. I think it is going to be a glorious day. We have been having a wonderful long weekend. The boys didn't have school on Friday and I had the day off from work. We had some great family time and Stacey and I both had the chance to catch up on our sleep. There is a little extra coughing going on in the house, but, nothing major. Everyone is doing great. The boys earned a new game for their Wii - "Meet the Robinsons." I picked it up this evening and they had the chance to play it for a little while before bed. A group of hard working folks at my employer took up a collection for us to buy Ben (and James) the Wii and several games for it. I had the chance to bring Ben into work to meet them and it was really neat to see him greet them and thank them for it. We did stop/slow production in their area for a few minutes as they showed him how they make the magnets for the MRI machines. I think they enjoyed it as much as he did.

          

Everything is ok with Ben. He has been off the antibiotice since Thursday. We have had to wait on chemotherapy because his blood counts have been too low. It is not unexpected. His platelet count was low on Thursday and he received a platelet transfusion. We go to clinic on Monday to have his levels checked again. If his platelet count his still low he will probably receive a transfusion of platelets right after the clinic visit and then go back to cklinic on Wednesday or Thursday. They scheduled him for it anyway. If they are ok, but, not quite good enough we will go back to ckinic on Wedneday to check again. If his levels are fine on Monday he will be probably be admitted to the hospital on Monday to start chemotherapy on Tuesday morning.

            

   On Easter Sunday Ben is going to be singing a solo with the children's choir. They are all singing the first 2 verses of "Victory in Jesus" and then he will be singing the 3rd verse as the rest of the choir hums and then they will join in again on the chorus. He has worked hard on the words. He definitely has them down. I am not so sure about the tune, but, that is why they are going to hum behind him...to keep him on track. We are all looking forward to it. For Easter dinner we decided to take a low stress attitude towards the meal. We will be eating at Carrabba's for dinner. I can honestly think of no better place for our family to celebrate Easter dinner. The fundraiser that Carrabba's made possible has been such a blessing to our family. It has given us the necessary cushion to cover Ben's medical expenses that we have not had to worry about whether or not our insurance will cover something that we feel is necessary for his healing and recovery. It will be good place for our family to celebrate the holiday meal.

           

  Thank you all for keeping Ryan McCormick in your prayers. He is holding on. We are hoping that he will be able to undergo radiation therapy on Monday to shrink his tumors. The little guy is fighting a really strong cancer called Neuroblastoma and his tumors have been more aggressive than most. The doctors feel that if they can get him through the radiation treatments there may be better things to come for him. 

                      

  I have a feeling I am going to be running marathons for the rest of my life or at least as long as I am able. Ben is doing incredibly well and even though we are going through something I truly pray nobody should go through we don't have to look far to realize how well we are doing. A good deal of the reason we are doing so well is because of our absolutely amazing support structure. On a daily basis at least one of you reaches out and touches our family both intentionally and incidentally. Last week while I was at the hospital with Benjamin Stacey went grocery shopping in the morning before switching places with me at the hospital so I could go to work.. She loaded the groceries into the car and then accidentally locked her keys in the car. I was at the hospital without a vehicle; we swap the car when we trade places to use less gas. I couldn't help her. One of our neighbors was in the grocery store and came to her aid with a ride home. That same neighbor met James at the school bus stop after school that afternoon so I could stay at work. I picked James up and then I went to the hospital to spend the night. She is just one example of the beautiful people we are blessed to have in our family's lives.

4/3/2007

   Benjamin is home now. We have to hook him up to an IV pump 3 times a day to receive the rest of his antibiotic. His blood counts are still low, but, not in the really dangerous range. He wanted to go to Noogieland tonight so badly that we brought Ben and James. Ben is wearing a mask to help prevent him from getting sick. None of the other kids are coughing or sneezing so he will be fine. If we thought it was dangerous we wouldn't be here. The benefits outweigh the risks. Once again I am actually updating the site from Gilda's Club. Not only is this good for the boys I think it is good for me too. I try not to think about work and just relax a little. Stacey has come a couple of times and I think she finds it a good place to relax for a couple of hours.

           

   We will be going to clinic on Thursday morning. We are hoping his levels are back in the range they should be in so we can move on to the next chemotherapy treatment. The boys spirits are high. Stacey and I seem to be on a bit of a rollercoaster though. Nothing to get worried about it's just been a rough week. 

          

  As you know we have been meeting and getting to know other families in this process. One of the other patients is really going through a tough time right now and he is miles and miles away from home. It is too dangerous to even move him so his family as all gathered at the hospital. He is only a very little boy who has been through so very much. His name is Ryan McCormick. Please pray for him and his family. His parents Darlene and Jim are really going through a parents worst nightmare. He also has a couple of sisters that are only a litle older than he is. Please add them to your prayers. I will let you know when there is some more news on Ryan.

                 

   I was talking with someone here at Gilda's about seeing what the other families are going through and she put it into context for me. She went through it with her son so she has been where we are today. She said,"It's like a war on children. You are there witnessing it, not being able to do much and your own child is in the thick of it."

4/2/2007

  Last night when we arrived at the hospital they took some blood and check his levels. His platelets, hemoglobin and white blood cell counts were all low. Even though the fever went away by the time we were admitted to the hospital his little body was letting us know something was not right. The platelet count is very serious because if it goes to low he can start bleeding internally. He received a platelet transfusion last night aroung midnight. His levels were checked again this morning and they had dropped even further. His white blood cell count was .7 last night and this morning it was .3. Even with the platelet transfusion last night his platelet count had still gone down slightly. I just spoke with Stacey and she says that his spirits are high and he is acting normally. He is slightly pale, but, you wouldn't know it if you weren't familiar with his coloring. He is receiving transfusions today to help keep his counts within a safe range. They also took blood samples that are being cultured to make sure he does not have a bacterial or fungal infection. He is receiving an antibiotic just to make sure. He is a real trooper. The amazing thing to me is that Ben and James are both very accepting of the trips to the hospital.

           

  Last night James asked if he could come with us to the hospital. Of course we took him. Ben was in bed and James decided to help unpack his belongings for him. He took Ben's pajamas out of the bag and put them in the small chest of drawers. He took out Saymus and put him on Ben's bed. He also took out hospital guy ( I don't know what to call him) and put him on the bed. Then he unpacked the prayer quilt that was made for him and gently placed it on the bed after asking Ben to stand. After he had it just right he folded it back and asked Ben to get back in bed. When Ben was situated and comfortable James tucked him in under the prayer quilt. It was very sweet and caring.

               

   We are anticipating that Ben will be coming home tomorrow after the cultures come back. It is expected that Ben will be starting his next dose of chemotherapy next Monday. So we should be coming into the hospital Sunday night for fluids before the chemotherapy. We will find out for sure tomorrow from Dr Pearce what she wants to do. Of course it will also depend on Ben's blood counts.

4/1/2007

  Ok, this entry is not an April Fool's Day joke. Ben has been having a great week after chemotherapy. He was doing so well that it was hard to believe that he came home Tuesday. We were looking forward to going to clinic first thing the morning to get his counts. He went to see the River Rats, Siena Water Polo and Church. He was not showing any signs of being tired or even a little under the weather so we didn't worry about him. Today after church we went to the Circle Diner, one of his favorites, and he didn't eat his pancakes. He said his taste buds were a little off so I didn't worry. We went to see what time the water polo team was playing and then went home. He now has a fever and we are heading to the hospital. I will tell you more tomorrow.

3/31/2007

  Ben has been doing very well. He did well in school on Friday and had a great time at the River Rats game Friday night. He had a spelling test and was able to get 7 out of 10 right on the test. Normally we woulod expect a higher grade, but, considering he has been missing so much school that is a great score. We still haven't really had any tutoring from the school district. We have been trying to keep him up to date with the information that his teacher sends home.

          

  There were a couple of highlights to the River Rats game. Unfortunately the River Rats lost to the Manchester Monarchs. Ben and James are funny when the team gets to far behind they start telling me they are bored. I think it's their way of coping with having their team on the losing side of the game. Kirk MacDonald played really hard when he was on the ice. The River Rats just couldn't get all of the team playing well at the same time. They also weren't getting any lucky breaks. It was a tough game to lose. The Monarchs had a couple of players that seemed to be hitting their stride and the rest of the team capitalized on their successes. Kirk is in a tryout phase and even with that stress he took the time out to be with Ben and James after the game. He brought us into the locker room and made sure the team signed autographs for Ben and James. The whole team was wonderful. I am now and always will be a Kirk MacDonald fan. He is a cancer survivor and he has taken Ben under his wing. He told me to make sure I had his contact information and if Ben has any questions or just wants to talk he will make himself available. While he was spendiong time with us he was keeping a beautiful young woman waiting. As we left he apologetically told her he would be out of the locker room shortly. We apologized to her for taking up his time and she talked to the boys and told us it was ok because she knew why he was taking so long. If any of you go to River Rats game keep an eye out for number 23, Kirk MacDonald and make sure you cheer extra loud when he is on the ice. The other big thrill was getting to meet Rowdy. He came looking just for us and he spent a few minutes with the boys in one of the corridors. James was beside himself and Ben was thrilled that he remembered him from the hospital and even remembered that Ben went to Blue Creek.

      

  Today we went to see the Siena College Women's Water Polo Team play Gannon. It was an incredibly close game. Siena has a couple of players out of action either because they are sick or injured. They only had one substitution they could make. The other team had 6 people to rotate through. The team was fantastic and they won 6-5. After the game we were invited to go to a dinner for the team and their families. What an amazing group of young women and it isn't surprising that they are so great because they have wonderful families. Most of the team members had family members there. The families came from as far away as Hawaii. The young women were very happy we were coming to the dinner and they posed with Benjamin so they could put his picture on the team photo board. I just put Benjamin to bed and he feels a little warm. It's hard to tell. I think he is ok and that he is a little warm to the touch because of the blankets. I'll have Stacey double check and we'll see what his temperature is in the morning. Here are a couple of pictures from this weekend so far.

                        

3/29/2007

  It is Thursday night and we just finished family movie night. Stacey is reading to the boys as I type this. We watched "Happy Feet" and had a little tap dancing festival at the end. We all put on our pajamas just after dinner and fired up the DVD that one of our friends gave us over the weekend. Thank you Donnie. We have had many family movie nights, but, lately they seem even more special than usual.

    

  At clinic yesterday Ben received his Neulasta shot to boost his blood count.  His blood counts on Tuesday, before we left the hospital, were excellent so we don't have to go for counts until Monday. Ben is feeling great and we are looking forward to going to see the River Rats tomorrow night. Saturday we are planning to go to Siena Water Polo game in the afternoon. After the game we were invited to attend a dinner for the team and their families. One of the young women invited us to attend in place of her family who could not attend. We are very honored.

        

  On Tuesday morning Ben had a wonderful surprise. Rowdy the River Rat walked into his hospital room. Ben was totally taken by surprise and was not only speachless, but, a little dumbfounded. He absolutely couldn't believe what he was seeing. Rowdy and Shannon from the River Rats presented him with a cheering towel, team photo and photo of Rowdy. He autographed all of the items in front of Ben. Ben talked with him about how he was upset when the Hurricanes bought the team. Ben was afraid they were going to get rid of Rowdy. It was absolutely magical. After they left Ben leapt for joy and said it was the best day of his life and that it was the best thing that ever happened to him. Later in the afternoon Ben had another visitor. Kirk MacDonald came to visit him. Kirk is a member of the River Rats team and his currently a senior at RPI. He and Kirk talked about all kinds of things as they sat in the activity room and painted together. Kirk and Ben found a great deal of common ground to talk about. Kirk is a cancer survivor and they both like hockey. Kirk played for RPI and Ben has cheered for Clarkson. I am incredibly impressed that this young man would not only take time out of his busy day to meet Ben, but, to finger paint and talk with Ben for over 1 1/2 hours. I am in awe and will be a Kirk MacDonald fan forever. I may even cheer at an RPI game next season. Kirk said he would try to get Ben and James into the River Rats locker room after one of their games. I was at work when Kirk was visiting, but, I heard all about the visit when I arrived at the hospital. I was sorry I missed him. By the way a few of the single nurses are definitely more interested in taking care of Ben on his future visits, just in case some more good looking, single, eligible, hockey players come visiting. It turns out there are quite a few River Rats fans on the floor.

         

  Ben is doing very well. He went to school today and will be going tomorrow. We had an appointment this afternoon with Dr DeCaprio and he is right on track if not ahead of the game. Ben is not only going to be using a smaller sling more often, but, Dr DeCaprio wants him to go without it for periods of time when we are at home. I promised a couple of pictures from this last stay so here they are.