3/26/2007


Yesterday was a great day for our family. I got to spend Saturday night at home with James. Both of us crashed almost as soon as we hit our pillows. We woke up on Sunday and after getting dressed James and I went to the Circle Diner for breakfast. It was the first time he went with me when Ben was in the hospital. The other times I have tried to take him he will say no because Ben isn't with us. Before Ben was diagnosed with osteosarcoma the 3 of us would go to Circle Diner at least 3 out of 4 weekends. Since then it has been a great deal rarer. After James and I had breakfast we went to church. James was very excited about church this week. Our Church, Calvary United Methodist, is bursting at the seams and wants to modernize the education and worship facilities to better serve the community. As part of the huge capital campaign the children of Calvery have decided to collect 1 million pennies over the next 3 years. They intend to raise $10,000 in pennies. To start it off the kids collected their heght in pennies. A member of the congregation took 1/2" PVC pipe and made collection banks that were marke with the hieghts of the children. James and Ben have been diligently gathering pennies and both of them made their goals. We actually had to add more pennies to James' bank because he grew a little in the last month. When they invited the children up with their pennies James was the first one at the alter with his stack of pennies. While we were at church one of the women of the church gave me a wrapped box. Inside it were matching pajama's for Ben and I. She told me she was afraid that the ones for Ben might be a little small. After church James and I went to the hospital to see Ben. The pajamas were a big hit. I guess I have a reputation at the hospital and the staff there gets a big kick out of waiting to see what I am going to wear. I have never worn pajamas that matched someone else before. Ben got a big kick out of his pajamas and thought one of the super heroes on them looked like the Green Darakkoman. He was even more thrilled when he saw I had the same pajamas...only bigger...much bigger. They were very comfortable and Ben just fit him. The shirt has to be left unbuttoned for him. That's fine because we usually leave them unbuttoned anyway for easy access to his port. After seeing Ben James and I went to the St. Baldrick's Foundation fundraiser. The St Baldrick's Foundation support research and fellowships for pediatric cancer. Among other cancers it specifically supports research for osteosarcoma. It is one of the few osteosarcoma research support organizations that I have found. The idea of St Baldrick's is that people will gather donations from people and the they will get their heads shaved in a public gathering of likeminded individuals. In addition to the fundraising it also shows solidarity with the children who have lost their hair. Since I cut my hair really short normally and shave it when Ben is bald I didn't have much to remove. I wanted to do it anyway to pay forward the support we have been given. I told James he could do it if he wanted to, but, the decision was totally his. I only asked that he be ther when I was shaved. I told him he could use the digital camera or recorded to film it. He was thrilled. When I arrived I started filling out the disclaimer and paperwork. While I was doing that Toshiko, one of the volunteers let him pick something out a children's toy pot-o-gold to have. He came up to me and said, "I want to do it too." "Are you sure?" I asked. He responded,"Yes, I want to do it for Ben." I asked for the paperwork and signed him up. I put the rest of our donations in James' name. There was at least 15 people ahead of us in line and I wasn't sure if James' 6 year old patience would last. We worked our way into the badly disorganized line...the turn out was a great deal larger than they anticipated. People in line kept looking at James and saying, "He can go ahead of me." Before we knew it we were at the head of the line. The woman in charge of who was next loudly announced James with great style, "This is JAMES, he is 6 years old. He is having his head shaved in honor of his twin brother who is at this moment in the hospital receiving chemotherapy." The crowd of at least 50 people erupted with applause and a big cheer. James shyly beamed as he sat in the chair. I went after James. Picture having a crowd of 50 people standing there looking at you and watching the next time you get your hair cut. He was incredibly brave. I am so proud of him. I am so blessed to have such wonderful boys. There was a photographer from the Times Union there taking pictures of everyone while it was going on. When James stepped out of the chair he was again presented to the crowd and the cheered for him again. I gave him a kiss on the head and told him how proud I was as I choked back a tear. This morning I received a call from Stacey telling me I had to see today's Times Union. I went down to the gift shop still wearing my colorful pajamas and brightened a few people's day as I passed. Lo and behold there on the front page of today's paper is an excited James looking in a hand mirror being held by the hair stylist after she made the first 2 swipes with the clippers. Stacey told me James was walking on air he was so thrilled. I think it was the best thing for him to get some of the attention he has seen his brother get. I spoke with one of the doctors this morning and he thought they raised over $40,000 for support of research into pediatric cancers. They are already starting to think of ways to improve it for next year. Ben had a great night last night and is tolerating this round very nicely. We have one more day fo chemotherapy tomorrow and then we get to go home. Ben will be having a special surprise tomorrow morning and I will tell you about it afterwards.


3/24/2007


Last night was also uneventful. Normally if one of us does and overnight the other will come in the morning or lunch time to make sure one of us is always in the hospital with him. We made that commitment to him when this first started. If Ben is in the hospital either Stacey or I am there with him. We may be heading to the cafeteria or another errand within the hospital, but, we are there. We have had many relatives and friends offer to be with him and some times we have taken them up on their offers to be in his room with them so we can take our time. We also have had some great folks show up with a sub or pizza for us. I stayed all day today and arrived home with James a little after 9 pm. Stacey needed a day off and a couple of her friends took her to the Tang Gallery at Skidmore for an art exhibit they all wanted to see. I really enjoyed spending the day with Ben. Normally I am showing up around dinner time and then leaving at breakfast. I spend most of my time with him holding the pee container. We had a great time today. The Television was only on for about an hour and that was when he took a nap. A group of students from a fraternity at UAlbany came and made springtime crafts with the kids. Benjamin was so excited he asked my at least 5 times if it was 1 pm yet. He worked with them for a little over an hour. During the last 15 minutes I noticed he was really tiring fast. He was determined to stay there to finish the craft project. As soon he completed it I thanked them and took him back to the room. I try to put myself in the shoes of these volunteers. To me it would seem like the kids are having an ok time making something. There might be a couple parents hovering around. The kids finish their projects and go back to their rooms. Sometimes the projects are a little lame and may seem like time killers. For example coloring something that they could easily have done in their rooms. I have discovered it doesn't really matter what the projects are. It doesn't matter at all. What matters is that it gives them a reason to get out of their beds and rooms. We have all been sick and felt crappy and spent a day in bed before. We all know how easy it is to stay there and dwell on how we feel. Television just numbs the pain. Getting up and interacting with people is what matters. I have tried to understand why Ben looks forward to these things. I ask him about it, but, I get answers that only make sense to 6 year old. I do think I have figured out why some of these things have a big impact. It is a chance to do something...to create. The people who are working with the kids aren't their parents. Often they are total strangers and may become good friends. These people show these kids that someone cares...someone who isn't their mother or father...someone who isn't spending time with them because of who they are...just because of them. It is also usually the younger volunteers that the kids gravitate to...high school, college age. I think it is because they innately recognize that folks around that age are older than them, but, aren't their parents. Similar to "The kids Next Door" except the teenagers aren't the little kids enemies. I don't really sleep well when I am down there so this is going to be a very wordy update. I just know that many of you check this site first thing in the morning and at night. I wanted to get something for you to read. After we are back in Ben's room for an hour he woke up suddenly fram a little nap. He was complaining about having potatoes in his ear. I told him there weren't any in there and I looked. There really wasn't any ear wax visible. He started crying and holding his ear. He didn't have a temperature. It isn't like him to cry over pain. It has to really hurt. He usually only crys in anticipation of shots, pulling of tape, etc...anticipation of pain...not the pain itself. I went out to speak with the residents and they came in and tried to look in his ears. His right ear was perfect, his left ear showed a little redness inside. They weren't sure if they saw any drainage and they asked me if he had his tubes done. I told them no. He wasn't showing signs of hearing loss and his temperature was fine. It was decided to wait and see. Benjamin said the pain seemed to be subsiding to a tolerable level and he quieted back down. About 45 minutes later he woke up from a nap very cranky and having to pee. When I steadied him his back felt very warm. He was teary and sobbing because there was too much noise so he couldn't sleep. I checked his temperature and it was 99.3. I told his nurse and he waited 15 minutes to check again. His temperature was 99.7. 15 minutes later the PCA came in and checked his temperature. It was now 101.5. The resident came in and he kept telling them to go away. He had been asking me to take him home just before they came in. The residents had spoken with the attending physician and it was decided that they would take blood cultures and administer antibiotics. As the resident was explaining what they were going to do to help Benjamin he started whining and crying. The doctor repeated again that they were treating the fever to make him feel better. Finally, Ben blurted out in a loud, whiny, sobbing, impatient voice,"I said, I don't have a fever I am JUST cranky." It still makes me chuckle. The other resident saw the humor in it, but, the one Ben was talking to wasn't quite sure what to say. Sometimes it is best to let sleeping 6 year olds lay. Ben's fever broke and he was totally fine by the time his Mom showed up. The antibiotics helped and I think it was one of those mysterious fevers he has been getting. It spikes up and then goes away almost as quickly as it came up. He really is a strong kid. We'll see how tonight goes and what tomorrow has in store. James and I are going to church in the morning. After church we will be going to the St Baldrick's event from 1 - 4 pm at the Pump House in Albany. They have at least 40 people getting their heads shaved to raise money for children's cancer research and to show solidarity with the kids. James hasn't decided if he is going to let them shave his head. They are really close to their $20,000 goal. I should be hitting my $500 goal when I get there. There was $150 donated on the web site posted so it's almost there. It really doesn't matter how much a person donates. They will shave your head for any donation. The greater the amount the newer and sharper the razor is. Ben's video on you tube is getting a great deal of hits. Thank you for checking it out. He loves checking the numbers and comments. Look for the one that has his picture in the thumbnail and not my mother. You can find it using the link in the post from the 22nd or by searching on osteosarcoma.

3/23/2007

  Ben had an uneventful night last night. We lucked out and have a private room this trip. Sometimes we have to share with other folks. Most of the time the people are nice and we have made friends with a few other families by being roommates. The were pumping fluids into him all night. I don't know how he does it, but, that kid can get up, stand there, do his business and then climb back in bed without actually waking up. Of course he does get some help form me. It also means that he's the only one in the room sleeping more than an hour or 2 throughout the night. Last night before his mother left for the night he asked if he could have a Mt Dew. We usually don't let the boys have soda and I don't remember ever giving him Mt Dew. Me being the big softy I said ok. I went to the soda machine and they had Mt Dew(Thank you, Jim). I picked up a straw on my way back to the room. He carefully and with great enjoyment took a long sip on the straw. As he took the straw out of his mouth he said, in voice sounding like Golem (Schmeigel) from Lord of the Rings, "Tastyyyy.  Aaaaahhhh."

                

   This morning around 8 am Dr. Pearce came in to check on him and see how he was doing. She said that all of her other patients were still sleeping. She checked his orders and the chemotherapy started soon thereafter. Ben will be receiving an assortment of drugs throughout the day. Thinking of the side effects of the different drugs we giving him I thought of the Jefferson Airplane song White Rabbit and changed the words...

    This one makes you sleepy and this one makes you strong

    That one makes you queasy and your nights long

  He will be receiving the drugs until about 5 pm and then the will take a urine sample and just fluids after that until tomorrow morning and it starts over again. The mixture of drugs changes slightly while the 5 days go by. He is looking forward to 2:30 this afternoon because they have Medical Bingo in the activity room. It's just like regular bingo except it uses pictures of medical equipment and supplies....crutches, hospital bed, syringe, sphygmomonometer, stethoscope, etc. They play until everyone wins.

             

   He is up for visitors and if this trip is anything like the last one he will be fine throughout. He started feeling the effects last time a couple days after the treatment was over. As a side note I heard that they found the source of the contamination in the pet food. The article I saw said it was Aminopterin. It is used as a rat poison in some countries and is also used to fight cancer. I must admit it is a little bit scary to read things like this. We know the drugs we are using in this battlecan be very toxic. Stories like this really highlight their toxicity. Aminopterin is not one of the drugs Benjamin is receiving. He does receive a drug called Methotrexate and it is very similar to Aminopterin and has the same side effects. The work of the doctors, nurses, pharmasists and others along the paths that create, test, research these drugs and find their uses is amazing.

3/22/2007

   We are waiting for the hospital to call us and tell us that they have a room for Ben. He will be receiving fluids overnight and then he will start with the chemotherapy sometime in the morning tomorrow. He has been having a tough day. He had to have a finger stick today to check his blood counts. Because his counts were ok he had to have his port-o-cath accessed. The port enables him to not have to have IVs put into his arms/hands. Since last night he has had a low grade fever that has come and gone a couple of times. He is very cranky. James seems to be having a tough time at school. We have seen some behavior issues at home since Ben's last 5 day round of chemotherapy and today a note came home from his teachers. They have made the school counselor aware of the situation. We talked with James about it and we think we have a plan of action for him to improve his behavior next week. I do not recall receiving any negative notes about him before so this is a first. Stacey and I are going to make sure we spend extra time with him over the weekend. We are also arranging for play dates and people to cover for us during the afterschool/dinnertime changing of the guard at the hospital.

             

  A lovely angel sent me several pairs of silly pajamas to wear this week at the hospital. You folks are amazing. Our family is so blessed to have so many wonderful, loving, caring individuals. There are too many things to list on the site. We have had invitations to travel to peoples homes in nice places when this is over or we feel it is possible. Folks are sending us thoughtful books and games for the boys. Our church has continued to send us meals during the week to help us with our crazy schedule. The cards and letters of support and love lift our spirits. The most amazing thing to me is that these things just seem to show up when we either need them or they will do the most good. Anyone going through this will tell you that no matter how positive you are there are times when you start to head towards what I call the dark places. We have seen it with the boys and with each other. Luckily Stacey and I have not been there at the same time. It is when we are headed towards these dark places that my brother will show up at the door on his way home from work. Someone will post a caring thought to the guestbook. A water polo game will happen. A simple card addressed to Ben or one of us will show up. Someone calls or appears on our doorstep with food. Somebody will stick there head in my office "just to talk" or I will bump into someone in the hall who has gone through something similar and they will just say, "I know, hang on." I know that you are all just responding to the little voice inside you saying do this and do it now. I know because I often hear my heart say the same thing. That little voice has lead me to run 3 marathons, to sign up to have my head shaved this weekend, to make a call or send a card. I also know that too many times I have ignored that little voice because of things that at the time seemed important only to find out later that I should have listened. You are all teaching me that I need to listen to that voice more often and not just listen, but, act. Stacey has said something about love that I carry with me. "Love is an action. To Love is to act." Thank you.

   

   I made some changes to the video I previously posted on youtube.com. I added some credits and titles to it. I also managed to get it so the thumbnail picture of the video is now Benjamin instead of my mother. Please check out the video. The boys are very proud of it. They helped me pick some of the pictures and were excellent critics. Unfortunately, I didn't meet their complete expectations because I wouldn't put one of the pictures in upside down. I will probably put up a few more videos. Ben and James have some ideas and we are working on animating one of his Green Drakkoman stories. I will put links to YouTube on here when they are finished. I am also having some difficulties with this site. Some of the pictures have disappeared or at least they aren't showing themselves. I have decided to do a complete redesign and it is in process now. The important thing will still be on here. I will at the very least keep you updated on what is happening with Ben. Here is the new and improved video. Feel free to share it and make comments about it -

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

3/21/2007

  Ben is doing well and will be going to school today again. Tomorrow we go back to the hospital to check his platelet level. Hopefully it will be high enough for him to start his chemotherapy. I find I have a difficult time when we can't stick to the treatment roadmap. I have put this energy into a special creation. Please enjoy it and feel free to comment on it here or at youtube. You can check it out on youtube.com -

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

3/20/2007

  I will provide more of an update later on tonight when I get home and see how today went with Ben at school. I just wanted to call a fundraiser for children's cancer research to your attention. It is called St Baldrick's Foundation. People sign up to shave their heads and pledge to raise or donate money.

Sorry for the short notice. The event is taking place on March 25th at the Pump House Restaurant in Albany, NY from 1 - 4pm. Ben has lost his hair again and I was going to shave my head anyway. So I thought maybe we could raise a little bit of money. Some of the doctors at Albany Med are sponsoring this charity event. The money raised goes to research for finding cures for children's cancers. This is one of the few charities I found that actually provides some funding for research regarding osteosarcoma. Please consider making a small donation in honor of Ben. You can make the donation online - http://www.stbaldricks.org/participants/shavee_info.html?ShaveeID=15883

 

 

3/19/2007

  We went to the clinic today to have his blood counts checked to see if he would be ok to start chemotherapy tomorrow. The game plan now is that he would be admitted the afternoon before chemotherapy is to start and receive fluids until the following morning. Chemotherapy would start during the day. Each day he would receive the chemo drugs. He is going to receive a couple of different cocktails. Some of them are received over 5 days. One of them (methotrexate) he will actually receive for only a single day and then the rest of the stay he will receive a "rescue" drug to remove the chemotherapy drug from his system as rapidly as possible. It usually takes 3 days when he receives that drug. Some of these chemotherapy drugs are totally new to us. Ben hasn't had them before so it is very interesting to see how his body is going to react to them. We are surprised at this drop in blood counts and platelets and that it is taking his platelet count so long to bounce back. The doctors aren't as surprised as we are and aren't too concerned about it. His platelet count is still too low. It is 53 and the lowest normal number for Ben would be 130. We brought Ben home and he is his usual self. We asked about school and since his other blood counts are within an acceptable range we will be sending him to school tomorrow. We will be going back to the clinic for blood counts on Thursday to see if he can start receiving the chemotherapy on Friday. Since the chemotherapy drugs wreak havoc on the blood levels it is really important they be as good as possible.

          

   While we were at the hospital we saw several of our fellow patients and their parents. It seems to be human nature to band together and appreciate what each other is going through. It's hard to believe, but, we have become one of the "oldtimers" now and others are asking us many of the same questions we had. Most of the time it is just letting them know that someone else understands what they are going through and validates their feelings, beliefs and actions. We received a lovely email from one of the residents who echoed what many of you have said about humor. I have been thinking a great deal about it and although our humor can often turn a little dark at times it is humor none-the-less. I think our nature is to find humor and use it to replace or difuse horror and fear. When we are able to do that it builds up our hope. Throughout this entire time I keep returning to a couple things about hope. One is the definition of hope I once heard or read somewhere - Hope is a prayer unanswered.

              

  One of the other parents is having a tough time watching their child go through everything. It is very difficult for them to see their little angel in pain and discomfort. It is very hard for them to see their most precious in a way they never imagined. I know what they are feeling and I was lucky enough to not stay to long in that place. Unfortunately, although I was empathetic and understanding I didn't think of anything to say to them that was very helpful. Later on I thought of one story to tell them about how I have handled it. Some day this may be embarassing to Ben and I look forward to the day when as a teenager we can all laugh. When we are in the hospital and Ben is receiving massive amounts of fluids he has to pee every hour to hour and a half. He can't hold the pee jug, yes that is the technical term, and go wee in it. Somebody has to hold it for him. The funny thing is that he actually almost sleeps through it now so he also needs to be steadied. Holding the pee jug for my six year old child in a darkened hospital room with his arm in a big sling and tubes coming out of a port in his chest was never something I ever envisioned. Kneeling before him, steadying him with one arm and making sure his aim is good. I realized one night that I was in a position often used for prayer. I looked up into Benjamin's sleepy eyes and saw pure love. It was my honor to be there doing this one thing for him. At that moment I totally understood the story in the bible about washing the disciples feet. I have learned so much from this experience and it has strengthened my faith in my god and in my fellow human beings. I have talked about some of these things with my boss at work. One day Bob put it all together and said something incredibly profound. He asked,"With all this kindness and love we are seeing poured out for Benjamin and others by so many people from so many different backgrounds why is there so much hurt, pain and violence in the world?" He asked the question with the tenderness of a father. Another thing I have learned is how to tell when Benjamin is about to have to go pee before he is awake. I have also learned the correct way to hold a pee jug for a 6 year old so I don't receive a shower in the middle of the night.

3/18/2007

  I am writing this at 10:30 pm. I tell you that so you have a point of reference for our weekend.  Ben and James are sleeping quietly and Stacey is finishing up some chores before bed. On friday we were in the hospital again to check Ben's blood levels. His red counts were ok, but, his platelet counts were half of the minimum amount to be within a healthy range. Because his counts were low his admittance to the hospital today was postponed until after his platelet count increases. Tomorrow we will go in the morning to have his counts checked. If his blood counts are ok he will be admitted sometime tomorrow and then his chemotherapy will start Tuesday morning. The round of chemotherapy he will be receiving will be given over 5 days. I will keep you all posted.

   

   Ben's hair is falling out again and he is almost completely bald. He still has some fuzz on top. His eyebrows and eyelashes have just started to fall out. He takes it all in such incredible stride and good humor. We have been joking about it. He sings a song about smelling his stinky feet or butt and I pretend to get angry. His pretend punishment (his idea) is to pull out a single pinch of hair. Then we both start laughing and he sings it over and over. As I am typing this I know it sounds awful, but, you really find crazy ways to preserve everyone's humor. One of ours is apparently coming up with creative ways to help Ben's hair fall out evenly. I guess I'll be shaving my head tomorrow. Ben and James have both asked me to grow a mustache so that part will be staying for a while.

           

   Today was the Siena College Women's Water Polo team's first home game. It was great. We were greeted immediately upon our arrival by Ellen the Assistant coach. The players were in the water warming up and a couple of them looked over and acknowledged Ben with either a little wave or a smile. We had the good fortune to sit next to a team Alumnus, Lauren,  who helped explain some of the finer points of the game while it was going on. Ben really enjoyed himself and the game. It really helped that the team played fantastically. They won 19-4. We brought along cow bells and rang them briefly for every goal. Nobody was offended, but, I think we showed that we were more used to watching hockey games. We actually rang them for the first goal, but, it turned it wasn't really a goal because the ball was already dead when it entered the goal. Lauren explained to us how to tell when the ref was signaling a goal amd not a penalty. As my brother Rob said, "Ok, so the ref speaks in sign language. We just need to learn the signals." We learned them pretty quickly. Ben tired out during the 3rd of 4 periods and spent the latter part of the game watching it resting his head in my lap. I asked him how he was doing and he kept saying ok. I asked him if he wanted to leave and there was no way he was leaving. At the end of the game he kept asking me if he could go and congratulate them. We waited until after Coach Swingle talked to the team for a post game briefing. As the team walked aroung the pool to head for the bleachers and the locker room I told Ben it was ok and he took off like a shot. The young women were so sweet with him. Their faces all lit up as they told him how great it was to see them. He even showed off his scar a little as they compared it with one on Kaedy the goalies shoulder. Ben's is bigger. They all took the time to talk with him and it was wonderful. He is already looking forward to their next home game.

3/14/2007

  Ben came home last night and did fine overnight. We have to give him IV antibiotics at home today and tomorrow so he is staying home from school. Friday he will be going to clinic and they will be checking to see if he needs transfusions of blood and/or platelets. He will also have is port de-accessed. He starts chemotherapy again on Monday morning. He will be admitted sometime on Sunday when a bed is ready. We are hoping they don't want him down there until late in the afternoon. He really wants to go to church in the morning and the Siena Women's Water Polo Team has a game at 1 pm. He has been waiting patiently for their first home game and I know he will be very upset if he misses it. I am still trying to get him to another River Rats game. They had a game tonight, but, we couldn't make it. Ben was experiencing very severe pain in his right arm earlier today. The visiting nurse was here to show Stacey how to hang an IV. Of course we already learned this skill, but, they have to demonstrate it every time. When she was here Ben was in tears and that is not like him. He cries over disappointments and in anticipation of some things, but, he rarely cries because of pain. We ended up taking him to Dr DeCaprio's office for them to check Ben out. Dr DeCaprio wasn't in the office today and it was really wonderful that he took the time to come in to make sure Ben was ok. While we were waiting for Dr DeCaprio to arrive they took x-rays of Ben's arm. I had to hold his arm outside of the sling. I have held Ben's arm when he showers so I am used to doing it without inflicting pain. I made just a slight movement of his arm and he winced in pain. His knees almost buckled. I thought the x-ray technician was going to panic as she grabbed for him. He caught himself and I held his arm as still as I possibly could while she finished the x-rays. Dr DeCaprio looked at the x-rays with us and checked Ben's arm out thoroughly. There is no sign of infection and the bone is completely intact and sound. Ben has excellent function in his hand and forearm. It looks like he might have tweaked the muscle that is most responsible for holding your forearm up. Dr DeCaprio poke and prodded Ben's arm until he found the exact spot that hurt. We are supposed to carefully work the arm a little more and Ben should switch out of the big sling to the smaller one a little more often. Ben was still in some pain tonight and with the excitement I didn't think it was wise to push him to go to see the River Rats play.

       

  A couple of folks from the Make-A-Wish foundation came and talked to him today after we came home from the doctor's office. They tried to interview him about his wish. He was not really into it and just wanted to talk about other things with him. He was more interested in talking about games, school and his life in general with them. I am not sure if he really understands what they mean about granting his wish. We are trying to not push him towards anything. We want the wish to be about him. We are already planning on taking him to Disney World in January so we have asked that a trip to Disney not be his wish. I am planning on running the Disney Marathon in January and Stacey is going to walk/run the Half Marathon. We are thinking of doing it as a fundraiser for the Green Drakkoman Foundation we are planning on setting up. Ben really likes the idea of setting up a Foundation to help fund research for cancers similar to his and to help families and kids going through it. We'll face that task after we are closer to the end of his chemotherapy. We are expecting him to be receiving chemotherapy until the end of August.

    

  We also have to talk to the school about Ben receiving tutoring while he is in the hospital next week. He really hasn't been able to go to school for more than a couple of days since this round started. We don't want him to fall behind. Stacey is going to try to do this tomorrow.

3/13/2007

  It is almost 4 pm and Ben is still in the hospital. We are waiting for him to receive another platelet transfusion. His blood counts are still a little off and they don't want to release him until they are within a safe range. James and I are going to hang out and get a bite to eat while we are waiting for Stacey to call and tell us to come and get them. I have no idea how a single parent could possibly go through this and preserve any semblance of sanity. I am looking at the posts I put on here over the last couple of days and I am amazed at the number of typos and grammatical errors. I'll have to fix as many as I can. Ben's spirits are high and the nursing care has been good. One of the residents was funny. They come in and ask questions that they know we have been asked a thousand times. They have to practice getting histories and checking patients. She was very tender with Ben and treated him with a certain spark of respect. I immediately thought of my cousin who is a pediatrician and a damn fine one at that. I am not sure if this young woman is going into pediatrics, but, she definitely has a gift with children and parents. We have had the good fortune of meeting several residents during this whole process that I think will really make absolutely excellent doctors. We have also met a few residents who while they will be excellent doctors they really shouldn't work with kids.

    

   We have had the good fortune to know some excellent pediatricians and there is a special skill, talent or gift that they all seem to have in addition to being knowledgeable physicians. I will never forget our first visit with Dr Anthony Malone after the boys were born. He examined James first. He looked him over from head to toe. He moved all the joints, checked his muscles, eyes, ears, moth. He squeezed his tummy, listened to his heart and lungs and did few other doctor check up things. The last thing he did was pick him up. As he held James in the air at eye level he scanned every inch of that child with an intent eye. Seeing how James held himself. At the very last second his facial expression went from that of a professional examining a baby with keen eyes and mind to that of a loving father or grandfather. He gave James a last little squeeze as he placed him back down and this time it was not that squeeze of a doctor checking the baby's kidneys. It was the loving squeeze of a parent. He did the same thing with Benjamin. As Stacey and I walked to the car we asked each other if what we had noticed had really happened. We both saw the same thing. We have seen all of the doctors in practice with him treat our children and the children of others the same way. I am not sure if we ever told Dr Malone this story, but, I am glad I have thought of it today. We have talked to other parents who have excellent pediatricians and they tell me their pediatricians treat their children the same way.

3/12/2007

   James and I ended up going to the River Rats game without Ben. Ben didn't want us to miss it. I had promised Ben that I would buy him a cheesehead hat. It basically is a big wedge of cheese that sits on your head. I'll get a picture up here soon. James and I bought the hats and went to the game. While we were there Rowdy the River Rats mascot came near our seats. James gathered up his courage and took the hats to one of the Ice Mice to ask Rowdy to autograph the cheesehead hats for him. He did a nice job. When we were leaving we ran into the Big Cheese...the gentleman who runs the contests and does announcing. He also autographed the cheeseheads as I told him why we were leaving the game early. The 3rd period had just started and James wanted to get to Ben's room before he fell asleep. It was almost 7:30 and one of the last times James went to visit Ben around that time he was sound asleep. James walked into Ben's room with the autographed cheeseheads like the 2 of them had just won an Academy Award. Ben was thrilled. He had gone from crying and being upset about not going to being enthralled with his new found booty. I am hoping to be able to take Ben to the next River Rats game after his discharge from the hospital. I sent them an email asking if they could set up a brief audience for Ben with Rowdy. I hope they can do it.

   

    Ben spent last night in the hospital receiving fluids. They checked his blood counts this morning and he received a transfusion of platelets and red blood this afternoon. It takes 1 hour for him to receive the platelets and four hours to receive the red blood. We will be spending the night again tonight. Because Ben had cramps and pain in the area of his appendix yesterday and had a fever they took him to x-ray to have it checked out. There was a concern that he had appendicitis. Everything checked out ok. Even though he has been looking a little pale over the weekend his spirits ar high with the exceptions of the disappointments I have outlined here. I am about to take James with me down to the hospital and change places with Stacey. We are in a private room this trip so it is relatively peaceful. It is also nice that he isn't receiving any treatments that make him get sick during the night. He will be having more chemotherapy next week. I think it starts on Monday.

3/11/2007

  I have no idea where this week went. I find as this goes on I am becoming terrible at remembering appointments, scheduled activities and life in general is a whirlwind. At least once a day somebody tells me I look tired or exhausted, yet, I don't really know why. Last night we were supposed to go to a River Rats game with a the boys' Cub Scout Pack. We had the tickets and for some reason I had it in my head that thegame didn't start until 7pm. We were having leisurely family time and at 6 pm I started to get everyone ready. That is when I looked at the tickets. The game started at 5 pm. We missed it. I offered to bring the boys to whatever was left of the game, but, there was a great shedding of tears. Nobody wanted to go for the final minutes of play. I solved the problem by going online and buying tickets for tonights game at 5 pm. Everything was back to normal and everyone was happy. Ben has been wanting to go to a game all season. We have been unable to get to a game because of all of Ben's treatments and appointments.  Tonight we were finally going to get to a game this season. Now I am not sure if we will make it.

    

   Ben spiked a fever this morning of 102.6 degrees. He was also complaining of abdominal cramps and his Urine is dark. We thought he was getting enough fluids yesterday, but, I guess not. We find ourselves at Albany Med, admitted to the pediatric floor. We aren't sure yet what's going on or how long we will be here. It is still possible that they will hang an antibiotic and fluids and we will go home. It is more likely that we are here for at least the night. I haven't decided if I will go to the game just with James. We have never done that before. I don't think James will want to go without  him. I'll keep you all updated. We were scheduled to come into the hospital tomorrow for blood work and a possible transfusion. Now we'll already be here.

3/6/2007

  Ben has been doing fantastic this week. We came home from the hospital on Saturday and today he went to school. He made it through the whole day without a trip to the nurses office to rest. A friend of mine from high school is a fireman in Oviedo, Fl. It is just north of Orlando. He heard about Benjamin from the article in the Times Union. When he checked the web site he read that Ben wanted to be a fireman and that the Watervliet and Schenectady firemen had given him shirts and patches. Ed called me and asked if it would be ok to send Ben a couple of shirts and patches from Florida. I told him Ben would love it. Last week a box arrived with 8 shirts and a selection of patches from the fire departments around Oviedo. Today Ben wore a shirt from the Orlando Fire Department with great pride to school. I had saved the shirts to bring to the hospital when he was feeling down, but, last week went so well I waited until after we came home to show him. There was even a shirt, patch and pin from a fire department in Germany, the country, not Germany, Florida. Ben now has a collection of Fire Department shirts, pins and patches as well as the Red Sox and Buddhas with a little River Rats thrown in.

  Ben and James went to Noogieland tonight and they had a great time. They made pancakes and cookies. They also had their own American Idol Karaoke concert. I didn't really hear anyone sing although I did witness some Macarana dancing.

3/2/2007

   If you don't see an update for a couple of days please don't worry. I sometimes have trouble getting updates done when we are in the hospital at Albany Med. I have to find a way to get a reliable internet connection when we are in the hospital. I am hoping to get something figured out by our next trip for chemotherapy. Tonight is our last night of chemtherapy for this trip. Ben has done amazingly well this week. Other than the skin tone changes and eye effects I mentioned before he has little or no side effects. We have managed to run into several of the families and other patients that have come to mean a great deal to us over the months of being on this path. I am reminded of the stories my brother Rick has told of his time hiking along the Appalachian Trail. Hikers pass and repass each other and form bonds on the trail. The same is true here. We all love it when we see each other and then we wish that we weren't seeing each other here.

          

   Today at work the employees had a fund raiser for the Ben Fund. It was wonderful. They raised more money than they anticipated and were ecstatic. I choked up several times while thanking people. I am becoming such a wimp. For me the most beautiful part of the fundraiser was the number of people just wishing us well and showing their support for my family. In the 6+ years that I have worked there I have always appreciated the generosity and care that fellow employees showed each other in times of need. Today it was my family's turn to be on the receiving end and it was awe inspiring. I work with a fantastic group of people. At the end of the bake sake part of the fundraiser they asked me to bring all of the remaining baked goods down to the Ronald McDonald Room at the hospital. Sharing their gifts beyond my family. I previously told the story about kneeling by the magnet during Ben's MRI in Burlington, Vt and how special it was to know the people who actually made the magnet. I took the time today to remind them of the good that they all bring to the world. The next time you are going through a medical procedure or a piece of diagnostic equipment is being used on you remember that someone took the time to research, invent, design, create and manufacture that piece of equipment. If it was a Philips MRI machine you can rest assured that today I thanked the folks that made the magnet for all of us who have been in that room.

2/27/2006

   Ben did wonderfully last night. His first night of chemotherapy was uneventful. He has been getting the chemo drugs throughout the day and is tolerating them well. He is in a good mood and his personality is showing nicely. When he woke up his eyes had the beginnings of what we call chemo eyes...slightly sunken and darkened rings around his eyes. I have noticed since I came back at dinner time that he is a little lethargic, but, not too much. James wanted to come down to the hospital to be with Ben. We finished his homework and then came right down. We are hanging out for a while and then James will go home with his mother and I will stay again tonight. Thank you all for your prayers.

2/26/2007

   We just came from Dr DeCaprio's office and the visit went very well. We will be going back in 1 month for Ben's next visit. They took an x-ray and the films looked great. He pointed out to all of us that there is some healing bone growth taking place. Ben is healing wonderfully from the surgery. We will be starting to work more with Ben's arm. Straightening and flexing it slowly and letting him support it more on his own. Ben's arm is stiff right now and that is a good thing at this point. The stiffness is holding everything together and tight while it heals. He can work it out slowly down the road.

           

   We are about to call Albany Med to see when Ben will be admitted today. It surprises me that we are all a little excited and actually looking forward to going to the hospital. We will be spending at least 5 days there as Ben starts this next phase of treatment. When Ben is receiving the chemotherapy drugs we look at is an active part of the battle. I used an anology when I was explaining this whole process to someone that I think works well. I am not a big fan of war analogies, but, that is what we are in right now. The chemotherapy is like the artillery and air cover. They are bombarding the enemy continually and weakening or destroying it. The surgeon is like the Navy Seals or a Special Ops team and they have gone in to get the main enemy. Now the artillery and air strikes are back to make sure everything is clear and the job is done. We do not anticipate a prolonged battle and have an exit strategy in place. We look forward to the chemotherapy starting again because it gets us closer to beating this disease. I will be doing the overnights on this trip so I am expecting to be going to a massage therapist next week and possibly our chiropractor. Lee at the Metro and Dr Tirella have both said they would make themselves available outside office hours if I needed it. We also bought a crate that turns into a handtruck and are planning to bring a cooler this trip. We have stocked up on some of the food we know Ben will eat. I have silly pajamas for tonight, but, I will have to find some more crazy sleepwear for tomorrow.

           

   We have heard that the Ronald McDonald House Room at the hospital has been renovated and is now finished. They just started the renovations as we were finishing our last treatment before the surgery. We have heard it is really nice. It amazes me how many people that place serves. If anyone is looking for a place to volunteer they are always in need. Some folks from our church are talking about bringing meals there periodically and based on our experience it is a definitely satisfying service to perform and the folks are truly grateful. One thing about hospitals and the Ronald McDonald house Room that I have noticed is that they are a great place to see folks from all walks of life meet and interact. I think because it is centered around the children it becomes a special interaction. People see each other as parents, relatives, friends of these special little people and realize that we all have more in common than we realize. The children are often tender and instantly care about the each other. They become friends very rapidly and parents, family and friends develop bonds as well. It feels like pledging a fraternity/sorority or going through boot camp.  I have heard Marines talk about their brotherhood and it sure feels similar when I think about the folks I've met. I think of Kyleah's mom and her quiet strength. I think of Ila's mom and her unconditional love. I watch as my wife watches over a little baby with the same care I have seen in her eyes when she was watching over our boys so his mom and dad can go have a meal together. I think of Emma's parents who started down this path in January and although they are a little overwhelmed their community is surrounding them with the same watchcare and love that ours has. I see all of these things and I am in awe of the human spirit.

                

    Today when we woke up one of the first things Ben wanted me to do was check to see how the Siena Water Polo team did in their tournament over the weekend. He was very happy to hear that they finished third. He said,"Yessss!!!" when I told him that their record was now 4-1. He dictated a congratulatory email to send to the coach. Ben is pulling for them again tonight. He really can't wait until their first home game in March.

  

2/23/2207

  We have come through the second major stage of Ben's treatment. We have been hearing from a great number of folks who have made this journey before us and they have been telling us stories of hope and joy. Ben is doing really well. He trusts that we are doing the best we can for him and he is very accepting of the overall process. He still is not thrilled about having his port accessed. He doesn't like needles and sometimes he lets us know it. Our new hospital routine is about to start. On Monday we will be seeing Dr DeCaprio and then he is turning the lead of Ben's care back to the Dr Pearce. The two of them seem to have a good rapport and they definitely are looking out for Ben. After we leave Dr DeCaprio's office we will be calling Albany Med to see if there is a room available. If there is we will be going straight there to have Ben admitted. The next round of chemotherapy will begin. Ben will be in the hospital for approximately 5 days to receive the chemotherapy as an in-patient. He will then have 2 weeks of no chemotherapy. During those 2 weeks he will be going to the Childhood Cancer Clinic at Albany Med periodically to have his blood cell counts monitored. He will also receive blood transfusions and/or treatment for infections as necessary. We are hoping that we will not be spending much time in the hoispital during those 2 weeks off. Then it will be a matter of Rinse and Repeat for the next 6 months. I am sure we will actually fall into a routine.

                          

    Stacey's mom is going to be going home in a little while so we will definitely be asking folks for help with James. I will be spending the overnights with Ben in the hospital during the treatments. I am still looking for a good silly pajama source if anyone has one. I even tried "Spencer's Gifts" and they didn't have anything that wasn't edible. Stacey will come to the hospital right after putting Benjamin on the bus so I can go to work. Luckily I only work a couple of minutes from home so I'll be able to go home for lunch and on many days actually work from home. It takes me about the same time to drive to work and get to my office as it does to walk to my office from the back of the plant. We also have a number of neighbors who are home all day to keep an eye on things for us. We also have a cadre of the boys friends surrounding us so James can get a play fix from a number of them.

                  

  In today's Times Union we found a story about a 6 year old girl who is fighting Ewing's Sarcoma. It is related to Osteosarcoma. When we were waiting for the pathology report on Ben's biopsy we were told that one of the things Ben might have had was Ewing's. She lives in a small village near us called Victory Mills. Their local fire volunteer fire department is having a dinner tomorrow ffrom 2-7 pm as a fund raiser for her. We talked with Ben about it and we will be going there tomorrow. He is hoping to meet her. We will most likely be seeing her family at Albany Med, but, it sure would be nice to meet them in a non medical setting. These beautiful little children should not be facing the things they are and catching these Sarcomas early is so important.

             

  I will be making some changes to the web site this weekend. I will be adding some additional pages and doing some updating of all of them. It shouldn't impact viewing and making guestbook entries, but, if you have any difficulties wait until Monday.

2/20/2007

  Once again time as flown for us. I have a great deal to update. We had a really great weekend. Ben is healing nicely. He started to mention to us that his arm was itching. W e take that to be a very great sign for a couple of reasons. First, it means that the huge incision is healing. If you have ever had a good size cut you can probably remember how much it itched as the cut scabbed over and started to heal. The second really great thing about the itching is that Ben can feel it. It means that his nerves are working the way they are supposed to. In fact Ben can feel the gentlest touch all along his arm. He seems to have excellent function in his hand and his strength is coming back nicely. HE still has his arm in a sling and he will for some time. He is moving it slightly and the occupational therapist has had him move it through his range of motion. It still hurts when he moves it. It is getting better every day.

                

  On Sunday morning we went to church. After church the first thing Ben asked me when he saw me looking at the newspaper was, "How did the water polo team do?" THe Siena College Water Polo Team had their first game on saturday. I found the score in the sports section and I told him, "They beat Mercyhurst 8-6 in overtime." I don't think he knew what overtime meant, but, his response was priceless, "Way to go guys!!!" 'Goooo Saints!!" He said it with such joy and enthusiasm I thought the team had somehow managed to sneak into the house behind me. The team is now 1-0 and Ben is itching to see them in action. Their first home game isn't until March 18th. They are off to a tournament and several games in CA now.

         

  Sunday evening we had the chance to go to the Islamic Center of the Capital District to witness their evening prayer, see a video on Islam and speak with members of the Mosque. We thought it would be a great opportunity to expose the boys to the Muslim culture and Islam. They have friends who are Muslim and we have a neighbor who is also. They boys sat very respectfully and listened intently as the Imam recitated the prayers and then translated them for everyone. As we were taking off our coats when we arrived a very nice gentleman came up to us to welcoime and introduce himself. He asked about Ben's sling and as I made introductions and started to explain he recognized Ben's name and said he was the pathologist at Albany Medical Center/College who had processed Ben's biopsy and was working on his tumor evaluation. We talked for a little while about the process and his knowledge of Osteosarcomas. Dr Nazeer is an incredibly caring man who impressed me as being someone who treats each case with the thoroughness and care that anyone would for their own relative.  We ended up leaving before the evening was over because the boys were getting tired. It was past their bedtime. As we were leaving he came up to me and gave me his card. He told me that if I had any questions at all, especially after the final report was released,  or if there was absolutely anything he could do for us or Benjamin to call him. Once again I am incredibly amazed that we would find another doctor, a Doctor of Pathology, with world class expertise in a rare cancer like Osteosarcoma in Albany. Benjamin is in the best hands we could possibly find and they are our neighbors. As our family all walked to the car Stacey turned to me and said, "I guess we were really meant to come to this tonight."

             

   Yesterday afternoon Ben developed a temperature of 101.8 degrees. We called Dr DeCaprio's office and waited for them to call back. As we were waiting we monitored Ben's temperature and it lowered to 100.6. After speaking with them we decided to keep an eye on his temperature and if it spiked again we were going to take him to the hospital immediately. It stayed right around 101 most of the night and was less by morning. We brought him to the Childhood Cancer Clinic at Albany Med this morning and they took blood cultures and samples. Dr Pearce examined him. His white blood cell count was elevated, but, his incision is fine and his arm does not seem to have any signs of infection whatsoever. He was given an intravenous antibiotic and we will bring him back tomorrow for another antibiotic treatment and to see how the cultures come out. He seems fine and his temperature is mostly back to normal.

             

    We talked a little with Dr Pearce about Ben's future chemotherapy treatments. He will be receiving a more aggressive course of treatments. SHe gave us a small taste of what we have to look forward too. He will be receiving a different drug that will be given to him over 5 days and then he will have 2 weeks off between the chemotherapy drugs. During that time he will be home unless he needs transfusions or develops infections or other negative side effects from the chemotherapy. We will have to bring him into the clinis during his "off" weeks for blood tests to check his levels. He will also need several different types of scans during that ime to make sure everything is working. Technically right now we believe that he is cancer free. He currently is showing no signs of additional tumors. The chemotherapy treatments he will be receiving are to make sure that his system is clear on microscopic levels. Dr Pearce will be giving us a more detailed roadmap soon that will give us the exact drugs and protocols he will be receiving. It will also include an anticipated timeline. The journey continues.

2/16/2007

   Today we went to see Dr DeCaprio. As he started to examine Ben's arm he casually asked him about the karate class Ben took. I knew he was reading the web site. It really does mean a great deal to us that Dr DeCaprio treats Ben this way. He talks to Ben directly and asks him what is going on and then he addresses us as appropriate. Ben feels very comfortable working with him. He ran Ben through his paces and checked his feeling and movement. Everything is going really well with the healing process. At one point Dr DeCaprio marvelled, "You really are one tough kid." The incision is healing nicely. We also were able to see another x-ray of his arm and it looks good. 

                         

   After the examination and discussion of the surgery and the healing process the preliminary results of the pathology examination of Ben's tumor were shared with us. Ben's mom was sitting down and Ben was standing between her legs leaning back against her...sort of half sitting in her lap. The first pathologist's preliminary numbers are that the rate of necrosis or destruction of the tumor was 40-60%. We had been hoping for the number to be as close to 90% as possible if not above. A second pathologist is independently analyzing the tumor now and we will see what his findings are. After the two pathologists have made their reports we will have a more exact percentage. Stacey started to cry a little and I think she quietly cried most of the way home. Even though the tumor was not completely destroyed by the chemotherapy it HAS been removed and is no longer a danger to Benjamin. Even though it was a very aggressive tumor it HAS been removed and is no longer a danger to Benjamin. The chemotherapy held the tumor at bay and slowed its' growth so we were able to get it out of Ben while it was still localized. Now Dr Pearce will take over and be able to alter the chemotherapy protocol to effectively attack any remaining osteosarcoma that may be in Ben on a microscopic level and we will continue the battle with the Green Drakkoman and his team at our side. Dr DeCaprio and Dr Pearce are discussing Ben's case today and we will be meeting with Dr Pearce next week. I will have more information to share at that time.

              

   Yesterday the boys did not have school. Two snow days in a row. In my day we were lucky if we had 2 snow days in a year with a blizzard once a week. I had to walk to school when I was the boys age and it was uphill in both directions. Ben really wanted to go outside and build a huge snow fort with is brother. I tried to explain to them that it really wasn't "good snow fort building snow" anyway. James was determined to go out and play in the snow. He turned to Ben and said, "It's ok. We can design the snow fort together. I'll go out and do the building and you can direct." They tried, but, it was true that it wasn't snow fort building snow. It's too light, too small, too hard and not wet enough. James ended up outside just thowing snow around. They both did have a good time though. After a while Ben was bored with watching James outside so he wrote and illustrated a book for me about Kings. I should have time this weekend to finally get all the pictures uploaded and I'll try to get that book on here.

             

   We received an email from a young woman who is a senior at Shaker High School. She has written a really nice article and wanted our permission to put it in the school newspaper. I told her it was fine, but, we wanted to receive a copy of the edition when it was published. I remember the brief time I spent on the school newspaper when I was in high school. As I recall my main responsibility was for the puzzle page.

          

  This weekend the Siena College Women's Water Polo Team is playing in Erie, PA in a tournament. Ben wanted me to tell you all on the web site "GO Saints!!!" I wish we could make the trip out there. Stacey's Mom lives out that way now and her sisters live in the Buffalo area. We could bring her mother and her dogs back home on the way. I'll float the idea at the dinner table tonight and see what happens. Ben is chomping at the bit to actually see them play.

              

2/14/2007

   As most of you know we are experiencing quite the snow storm here. I think we have 20"-24" of snow right now. It is hard to tell because it has been blowing around quite a bit. I think I've shovelled close to 30" of the nice white stuff. It's hard to complain since we haven't had too much snow this year. Of course I couldn't get my snowblower to start. I started it early in the season when I took is out of the shed. I guess I have a snowblower that doesn't like the cold. I'll bring it for service after the storm is over. We have a gerat neighbor across the street who came over and used his snowblower to do our driveway. I shovelled the walk and an area in the back yard for my Mother-in-law's dogs to pee. They are little dogs with high pitched barks which they choose to use rather often - a papillion and a yorkshire terrier.

            

   This morning I was the first person awake and it was then that I discovered I was going to be using a shovel instead of a blower. I shovelled the walk and then went back into the house for some breakfast and to warm up. Ben came downstairs and asked me to cover him with ablanket as he reclined on the couch. In the house he doesn't wear a shirt because they are hard to get around his sling. I asked him how his night was and he said it was good. I then asked him how he was doing. He replied with a big smile,"Good, but, not good enough to shovel." We didn't give him his pain pill this morning and he has been fine all day. We'll give him one before he goes to sleep for the night. He really is doing well. Our fantastic neighbor with the snowblower told me that his wife and lovely daughter ( Younger than the boys) had worked on a big "Welcome Home" banner for Ben and just as they finished it on Saturday they looked out their window and saw we had already brought Ben home. They were thrilled, but, at the same time disappointed. Then his daughter wasn't feeling well so they were afraid to come over. I told him to come on over and invited her to play with James in our backyard on our wooden swingset. James and I were out there for a while after work this afternoon and it was a blast. Ben watched through the window for some of it. He was playing in the snow vicariously through me. I tried to act the way he would instead of like Dad. Needles to say I managed to get snow in places it hasn't been for years.

          

   Ben continues to amaze us with his recovery and he is working as hard as he can. Today he was thrilled when the mail came because he had a get well card from the Women's Water Polo Team. He has asked me about going to another practice. He wants to see a scrimmage. I will be contacting the coach tomorrow to see what their schedule is like ove the next week or so. He also asked me if he could be on the Little League Team this summer like he was last year. I have volunteered to coach again and we had a blast last year. James really wants to play. Ben told me he just wanted to be on the field and that he would be my helper in the dugout. I am going to talk to the doctors and the League to see what we can do.

2/13/2007

   I am actually sitting in the aquarium room at Gilda's Club. Ben and James both wanted to come tonight. It is hard to believe that it was only a week ago that Ben had his surgery. They have a karate instructor who is giving a lesson. Ben wanted to participate so I said sure. I think some of the volunteers thought I was a little crazy. They asked me to watch to make sure Ben didn't hurt himself. I agreed, but, told them I trust him and he will make a good decision if it is too much for him. Dr DeCaprio had told us that the pain he was experiencing would prevent him from doing anything stupid...at least for the first couple of weeks. Sure enough after about 5 minutes Ben had had enough and he asked to take a break to watch. I am so proud of this kid. One week after a major surgery on his arm and he is willing to try a karate class. Dr DeCaprio is probably having a fit right now as he reads this. Lisa, one of the volunteers at Gilda's Club, was prepared with a craft for him to do and asked him if he would rather do that instead of watching the class. He said yes so they went to the arts and crafts room to make a stuffed snake from an old men's tie. James is doing really well here also. It's a great place where they can ask questions about cancer and not worry about anyone not understanding. I think they both really miss Tai Kwan Do with Master Yang. We will have to look at getting James back into it and see about adaptive classes for Ben when Dr DeCaprio approves.

          

   Lisa just came into the room and told me that she asked Ben about the surgery. She told him how she remembered that he had told her he was "scared and worried about the surgery." He told her matter of factly that "everything was good and I am doing fine." I just realized as I am sitting here that it is 7:50 pm and he took his 12 hour pain pill at 7:30 am this morning. I didn't bring one with me either. It's a good thing we live very close. He hasn't even complained a little about it either. They told us to try to stretch the time out between pills further and further. It must be that Gilda's Club is a good pain reliever.

                            

    James stayed home from school today because his stomach was bothering him this morning. I think it may have been a little bogus bug. In the past when he has told us his "tummy was upset" and we have ignored it he has ended up getting sick so we fell for it this time. We think he just wanted some "Mommy time" and with everything going on it seems hard to deny him. He has really been a great brother to Ben throughout this. He has been caring and kind when he needed to be and a typical pain in the butt brother when it was necessary. It's funny how hearing the "He hit me," "No, he hit me first," "It's my turn to play on the computer" shouts from an upstairs bedroom can almost sound musical and comforting. Of course James had hit Ben lightly and on his left side. James will be going to school tomorrow.

2/12/2007

   I have been at work all day today and did not get a chance to put together an update until now. I will be putting together a couple of photo albums over the next couple of days and making them available on here somewhere.

             

   As Ben was getting ready for bed on Saturday night he told that he really wanted to go to church on Sunday morning. I told him we would try, but, we had to see how he was feeling in the morning. I also pointed out that he needed his sleep and that we might over sleep in the morning. He reitereated that he wanted to go and said, "They need to see me." Who am I to argue with a 6 year old so I told used the parental standby of, "We'll see." I looked in on hime at 7:30 am Sunday morning and he was lying there wide awake. I said good morning and he said, "We didn't oversleep did we?" I told him no and then started working on getting him a shirt to wear while his mother proceeded to get James and Ben dressed. I took one of my Polo shirts and cut it up the side to fit over and under the sling. Next we had to find a coat Ben could wear over the sling. We used one of his mother's coats and we thought it looked pretty good. Ben's response was,"How embarassing?" He wasn't thrilled about wearing a women's coat. Getting into and out of the car is tough for Ben and it is hard to help him without causing pain. It was all worth it when we arrived at church. He was thrilled. As we walked down the aisle (the boys like to sit in the 3rd row) many of people turned and looked at him with surprise and awe. I saw a couple of tears in a few of there eyes and found myself fighting back a tear or two. He was just a 6 year old kid with a sling walking down the aisle with a big smile on his face as usual, proudly wearing his fathers shirt. During the welcome and announcements the minister asked him to stand and everyone applauded. He seemed a little confused why they were clapping. Ben and James went up to the front of the church with all of the other kids for the children's story time. We were a little concerned because he sat on the floor and weren't sure how he would get up. WHen the story was over all of the children started filing out of the sanctuary. We watched as he managed to get himself up on one knee. He tried once, but, couldn't get all the way up. As I was about to get up to go and help him one of the other first graders saw he was having difficulty and immediately stepped to his aid. I saw him ask her for help as she reached out to him. Little Alexis gave his good arm a mighty tug and up he came. He didn't even wince. The 2 of them walked to their sunday school class together. When I help him he usually says, "owie, owie, owie." She told me after church school that she was thrilled that she could help him.

    

    During the sermon the minister talked about faith and he quoted something my wife had said to his wife last Sunday. They had been talking about everything that our family has been going through when my wife told her, "here we are experiencing something that started as something truly awful and as result of the love and support of our community has turned into something awesome." Many people have commented that watching us go through this process and seeing the way we are handling everything has renewed their faiths...faith in humanity, faith in the power of the universe, faith in their god. All we can say from this side of the equation is that you have are all carrying us on your shoulders through this swamp and for that we are eternally grateful.

     

   Ben is going to be out of school for the next couple of weeks. Mostly because we don't want his arm to accidentally get bumped in the hallway and to help him get comfortable with the sling. He also needs to do exercises hourly. We will be going to see Dr Decaprio on Friday and then he will tell us when he is releasing Benjamin back into the care of Dr Pearce for more chemotherapy. They have been working together as part of the Green Drakkoman's team throughout this ordeal. We never did point out to them that members of the Green Drakkoman's team rarely return back from there missions unscathed. It's kind of like being the unknown crewman on an "away mission" on Star Trek. The pathologist report on the tumor will determine the next course of action. Benjamin will definitely be receiving more chemotherapy. The amount, type and length of treatment are to be determined. Dr DeCaprio wants to make sure that Ben's arm is healing properly before any of the treatments that would slow healing are started. I am very glad that we have found an excellent medical team for this battle.

2/10/2007

BEN is Home !!! BEN is Home !!! Ben is Home !!!

 

  I never did manage to get my hands on a computer yesterday to give everyone the update. It was a very busy day and Ben worked very hard to prove he was ready to go home. I think we did at least 6 1/2 laps of the A3 wing.

                       

   I stayed over last night and James and Ben decided they wanted to have a sleep over. Since there was space in the room and James promised to be on his super best behavior and stay completely quiet and out of the way if anything happened we managed to keep him in the room. He slept on a second chair/cot that was in the room. Ben slept in the bed. Originally they wanted me to sleep in the bed so they would both be on chair/cots, but, I pointed out that the night nurse might give me Ben's medicine by mistake. They boys were wonderful and we all fell asleep soon after their mother left for home. It was an uneventful night and I actually slept through most of it as did the boys.

                    

    Our primary day nurse Melissa had made arrangements for special surprise visitor for Ben. Unfortunately, it wasn’t possible for the visit to take place while she was still there. Ben waited very patiently and finally a little after 7 pm the visitor arrived. It turned out to be 6 Schenectadyfire fighters in various stages of gear, up to and including full gear short of their Scott packs and tools. Ben's reaction was "Wow!!" I think he floated to the ceiling and back. He definitely did not feel any pain while they were there. They were extremely nice and they represented all 4 fire houses between them. It was really hilarious when they asked him if "He had to pick a number between 1 and 4 what would it be?" and "What piece of apparatus was his favorite?" They were all vying for his attention and he was eating it up. These guys were genuinely touched by Ben and thrilled at his reaction. One of them explained that he had twin girls that were a year younger than Ben and James. Everyone in the room joked about future dating possibilities as he and the boys tried to change the subject. The firemen invited him to come visit them when he was feeling better. The highlight for Ben was when they presented him with a one of their helmets that had been worn through many fires. I am sure it had been retired for safety reasons. It's quite banged up, yet, perfect for a little boy to love and honor. They also literally gave them the shirt off of one of their backs and a patch. Ben is thrilled because the shirt is an EMTs shirt. He wore that shirt home today and I must admit he looked really good in the shirt. People talk about firefighters being really special folks and having known several and meeting more since this all began they are right. These guys have hearts of gold it seems like the Watervliet and Schenectadyfire Departments have practically adopted him. I know he will remember last night and these guys forever. Thank you all and thank you Melissa for inviting them. It's not easy to get 6 firemen in gear into a hospital without creating a panic. Thank you Ellis Hospital for allowing it.

                     

   Ben is doing really well. He is still in some pain and it is difficult for him to move around with a huge sling on his right arm. We are going to have to modify some clothes for him to wear. We are starting with my clothes and then we will go buy some if we need to. He is in really good spirits and has asked twice if he can go to church tomorrow. If he is up to it and we can get him dressed we will go.

               

  After Ben's surgery at Ellis Hospital his admitting nurse, who is from Burma, took me aside and asked if it would be ok if she presented him with a small Bhuddha and said a prayer for him. She was kind and gentle and told me she did not want to offend us. I told her it was fine with us and it was up to Benjamin. She asked him and he said yes. She said a very brief prayer and then gave him a small pouch with a tiny "Healing Bhuddha" inside it. Her mother makes the pouches back in Burma. It was really sweet and she was excellent. Ben loved it and informed her that he already had a small Bhuddha statue and that it was a laughing Bhuddha. We are Christians, but, Ben knows there are other religions and we are trying to raise James and him with tolerance and understanding of other religions. He picked the other Bhuddha up about a year ago when we in a friends store and told me he had to have it and since it wasn't a toy I agreed. Today on the ride home he told me he wanted to start collecting Bhuddhas. He and James also asked to have us take them back to the Peace Pagoda in Grafton, NYand we told them we would this spring.

                  

   Now that is 2 trips I have promised to take them on. I know they will not forget either of them. The other trip is primarily for Ben, but, James wants to go too. I may have said this in a previous news update ( I usually don't reread these). They have really loved the support and atmosphere at Gilda's Club. Ben is sad that Gilda has died. He thinks she must have been an amazing woman because Gilda's Club was created in her honor. He wants to go to her grave and place a single red flower on her grave. He thinks red was her favorite color and that is why there is so much red at Gilda's. He has placed flowers on his grandfather's graves and tells us that is what you do for the people you love after they have passed away. I have told him that we would take him there this spring. I found out that she is buried in Conn.not too far from my brother's house.

      

   On a little lighter note, I just found out that my senior high school English teacher has been reading this site. He has me a little confused with my older brother. I graduated in 1980 not 1974. I am glad he was a little mistaken, because it has always been my understanding that my older brother was a better student. My writing must be better than I thought. Anyway, I just wanted to let Mr. Holmes know that I am writing this without the benefit of spell checking or grammar checking software. I am also doing each update somewhat in the style of James Joyce in that these ramblings are stream of conscious. I am not attempting the poetic constructs of Coleridge and Longfellow or the lyrical epics of Homer. 

2/8/2007

   Last night was a long night. At least the chair/cot was reasonably comfortable. I have to tell you that the staff at Ellis is treating us wonderfully. Their food service is room service. I think the food is exactly the same as that at Albany Med, but, you call down and select what you want from the menu when you want it. 45 minutes to an hour later it shows up at your door and it is hot. I think they wait until they have enough of a cart load to make it worth the trip and then bring it. The food is actually pretty good because it arrives hot and it hasn't been steaming in its own moisture under the food cover. I feel like I should be tipping them. Of course the nurses have taken a shine to Benjamin and they are wonderful. We are all lucky in the Capital District. We have experienced outstanding nursing care both at Albany Med and Ellis. As a parent it makes you feel good when you see one of the nurses or staff member take a little extra time to do something nice for your child. Sometimes it is just a comment or a look that makes you realize that they are viewing your child not just as a patient, but, as the wonderful human being they are with compassion and empathy. I come from a family that has had a great deal of nursing experience and I have heard tales about nurses who get burnt out or just do their job. Our experience has shown that by and large in the capital district the nurses and PCAs are strong, compassionate folks who do their jobs with empathy and care.

           

  OK, enough sucking up to the nurses. Ben is doing remarkably well. You know I am finding that I am running out of superlatives...isn't that wonderful. He can move his right hand, fingers and thumbs in all the directions they are supposed to move. The Occupational Therapist has had him moving his thumb in circles, making fists, splaying his fingers and extending them as if counting one at a time and he has been able to follow her instructions without hesitation. She also gave him a little fish filled with some fluid, most likely slime, to squeeze. He was able to squeeze it 10 or 12 times before he said it was too tired and hurt. She told us that was great. He has complete feeling in the hand and a strong pulse at his wrist. He was taken off the morphine pump tonight and is now receiving a 12 hour, very strong, pain killer orally. Tomorrow they are taking out the IV lines completely. We managed to get him out of bed and into a barca lounger today. He is still a little swollen and puffy around his ankles, face and arms. Tomorrow he will be walking around and moving more which will help with that. The pain is still an issue for him and he tires easily. Of course that is compared to his normal pre-surgery behavior. For a person who has gone through what he has gone through it is nothing short of a miracle that he is doing so well. All of the medical staff say that he is either right on target with where they would hope him to be or even a day or so ahead of it. I know I would probably be a miserable SOB telling them there was no way they were taking away my morphine button. His sense of humor shows even at his crankiest and whiniest moments. He was in a great deal of pain as he was being moved and looked at and in a very nasal, pitiful, half delirious sounding whine he half sang, "Who let the dogs out? OW....ow...ow..uh...OW!!" Most of you are finding it funny and few of you probably just spit soda onto your keyboard.

                  

   Earlier tonight his mother was talking on the phone and told someone that he was "toasted." He just started balling, tears streaming down his cheeks. I asked him what was wrong and he moaned soulfully "I'm toasted, toasted to bits!" The nurse and I just looked at each other. We tried to calm him down and it took several minutes. Stacey had to apologize to him. As he calmed down he saw the humor in it and started to milk it a little and that was even funnier. He told the nurse he "couldn't take his tylenol and cry at the same time." so she had to wait until he was done. You have to remember he has been getting morphine and that can make people a little loopy from time to time. Loopy is a technical term I learned from watching "Jimmy Neutron" with the boys.

              

   You may remember that I like to where funny pajamas when I stay in the hospital overnight with him. I like to get a smile when he sees me in them for the first time. I asked for some help finding them because my supply was dwindling. Well, a "Secret Admirer" sent me a wonderful pair of pajamas that they made. They are bright orange, green and blue and have "Drakkoman Rules" appliqued on them. I will post a picture on here when I get a chance to upload one. I am hoping that the person made them a little on the large side because they didn't now my exact size. They are wonderfully comfortable and they were a big hit with Benjamin and the hospital staff. I would like to thank the person who made them. I have an idea who they might be, but, I may be wrong so I will respect their wish for anonymity.

                 

   I will keep everybody posted, but, there may be a chance that Ben will get discharged on Saturday if he keeps improving as rapidly as he has been.

2/7/2007

   Yesterday went very quickly. We are amazed at how rapidly the time seemed to pass. We arrived very early in the morning at 6:45. We went straight to the Pre Op area and Ben changed into a lovely hospital gown. James had lobbied heavily the night before to come with us. Of course he waited until Ben fell asleep to talk to us about it. He really felt that he needed to be there for Ben. He told us that he would hold his brother's hand when Ben "got a shot." We talked about it and told him he could come. We knew that we would have people there if he wanted to go home. It was really sweet to see Ben being brave in front of his brother as his port was being accessed. At one point James kind of teared up as we were about to give Ben hugs and kisses before he left for the operating room, but, of course he didn't admit it. Stacey told him he was alot like his Dad. I don't know I seem to be crying at the drop of a hat these days. It was touching to see them look at each other.

                 

    While we were in the Pre Op area Dr DeCaprio brought in a Vermont Teddy Bear Company bear from the Musculoskeletal Transplant Foundation that had it's arm bandaged up like Ben would be after the surgery. Ben took him and the big blue prayer puppy that our church had given him into the operating room. Caymus would be waiting for him when he came out of surgery. The surgery itself followed the plan Dr DeCaprio had set out to a tea. It took a little longer than expected, but, everything is fine. Ben's right arm is now 1 cm longer than his left. A nice little bonus. He is now in Bed with Caymus, the MTF bear (not named yet), the Prayer Puppy (that's its name), and Boris the black bear. He has the prayer quilt that was given to him over him and when he has needed it he has been using the great Yoda blanket that was made for him by a group of Brownies. He is surrounded by tangible examples of the love that surrounds him.

               

   Throughout the day we had friends and family come to support us. It was a really nice group of folks who would come and sit with us for a while and we would talk about all kinds of things. The best part seemed to be that they would come and go and the perfect person would be there at any one time during the day. We couldn't have scheduled them or chosen them better ourselves. We really feel like the universe is taking care of us. My own faith in God and all that is good in people is growing day by day.

                 

  Today I drove James to school and went inside to tell them all how Ben was doing and answer any questions they might have. Ms. Trapini and the staff in the office were thrilled that everything had gone so well. I was standing outside the office when Ms Trapini announced to the entire school through the PA system that Ben had gone throught the surgery with flying colors and that he was recuperating in the hospital and doing fine. As she completed the last sentence of her announcement there was a wave of children's cheers and clapping the echoed through the halls as the whole school erupted. If you are the parent of any of the students at Blue Creek please give them an extra hug from our family tonight. When Stacey told Ben what happened this morning his smile filled the room with light. I have some pictures from today and will be putting some additional photo albums up over the next few days. I am doing this update from the hospital and I'll be here over night so you'll have to wait until tomorrow.

2/6/2007

   Ben is in the recovery room and is coming out of the anesthesia now. Stacey is with him. I found a free computer at the hospital to do this update. Ellis Hospital has treated us with amazing care. We have spoken with Dr Decaprio, Ben's surgeon, and he has explained the whole surgery to us. It went extremely well. The evil alien has been removed from Ben's arm. It was a long battle and Ben is going to be in some pain, but, he should be fine. The operation was long and went as planned. Your prayers and support have helped Ben and our family clear this hurdle in his treatment. I will write a more detailed update later on tonight. I want to get back to Benjamin.

              

2/5/2007

   We went to clinic at Albany Med and to Pre-Admission Testing at Ellis and everything is a go for the surgery tomorrow. We have to get Benjamin to the hospital by 6:30 tomorrow morning. We will be going to the Welcome Center to check him in and then after they take him into the operating room we will be heading to the main waiting room....to wait. The surgery itself is scheduled to start at 7:45 am. I hope Dr Decaprio is in bed instead of watching "Deal or No Deal." I know tomorrow is going to be a long day. James is going to school so we can keep his day as normal as possible. I know they will be watching out for him and ready if he has any questions or needs to talk to someone. I will be updating the site as soon as possible. We will be calling the school and few other folks who have offered to call folks in their circles to let them know that Ben is out of surgery.

                    

    Good night everybody and thank you again for all of your prayers. I asked Ben if there was anything he wanted me to write in this section tomight and the following is exactly what he told me to say: 

    "The Green Drakkoman has found a new way to take out the cancer without attacking it. The evil alien is getting taken out tomorrow. We have my surgery tomorrow."

             

    

2/4/2007

   Today we all went to church and everyone there was incredibly warm and supportive. Ben is wrapped in their loving watchcare as well as all of the other wonderful people who are thinking of him. To my knowledge we have every major religion in the world  and a few minor ones all praying for our family and more specifically for Benjamin. Almost every Christian denomination I know of is represented. Islam, Buddhism, Hinduism, WICCA and Gnosticism are all in the mix as well. I have spoken with a couple of Atheists and Humanists who are also sending positive thoughts in Benjamin's direction. It actually surprised me when we started thinking about the religions and spirituality of the people we know are pulling for Ben. Tomorrow we will be going to the clinic and then to the hospital for last minute tests and pre-surgery bloodwork. 

            

    Last night Stacey and I went to see the King Singers concert at Proctor's. It was really wonderful. Duting the internission we went to the snack bar. A really nice woman recognized me and asked if I was "the father of the little boy on the front page of the newspaper today." I said yes and she asked about Ben and told me she was thinking of him often and would be praying for him on Tuesday. We also received a call yesterday at our house from a really wonderful gentleman who is in the middle of his own battle with a different type of cancer. His story was so touching and in the middle of his struggle he felt he needed to reach out to us. He told me he had had a really difficult night on Friday night and was really feeling bad when he picked up the paper and saw Ben's picture on the front page. Reading Ben's story brought him comfort. He told me that Ben is his hero and Ben's story renewed his courage. I think he thought I was nuts because I couldn't talk I was so choked up. I told Ben the story and his response was great. Ben looked at me and proudly asked, "Does that make me a role model?" I said it did.

           

   We also received an email from a "computer lab." A beautiful dog named Finnegan. He sent his masters best regards and told Ben about his own battle with the evil alien. You see he had osteosarcoma as well. The email and pictures were very cute and it was wonderful to hear Ben laugh. We really don't know what is in store for us over the next couple of weeks so every smile and chuckle from any of us seems extra special.

         

   I have run out of space on the web site so we have upgraded our web hosting so I can add more photo albums to the site. I will also be adding some sub pages to make the site easier to load. Some folks are starting to see slowness because of the size of the pages. We are amazed that the site has had over 5,000 unique visits. I am glad everyone is finding this site useful and entertaining. The boys have some great ideas for me to add to their pages and with the additional space I should be able to get more of them on the site.

2/3/2007

    Today in the center of the front page of the Times Union there is a big phot of Ben and a smaller one of his Green Drakkoman story boards. If you don't receive the Times Union you can read the article on their Web page at http://www.timesunion.com. Right now it is the the first article on the front page of the website. If it isn't when you get there you can use their search feature to find it. The article is wonderful and gives a great perspective of what is going on from a different an external point of view. I continue to marvel at how Ben's story is touching people. Here is the headline:

           

Boy and hero are ready for the fight

Ben Stowell, 6, finds courage in cartoon ally as he faces rare cancer

             

    Ben is feeling strong and ready for the surgery. The momentum and anticipation is building as we approach Tuesday. The mood is really good in our household. At noon we are going to Carrabba's to receive a symbolic big check with the final amount of the fundraiser proceeds on it and photo op. Carrabba's deserves as much publicity as the get for their generosity and hard work in putting together the primary part of the fundraiser and throwing their support behind it. We recognize that they were not the lone sponsor, but, they were indeed the fuel for the fire.

             

    James is going out after the Carrabba's presentation with a member of our church who was his teacher in the summer reading program last summer. Jan thought it would be nice for James to be the center of someone's attention and we agreed. We have tried very hard to keep our family lives as normal as possible and not have everything revolve around Ben and his illness. People have been great about not focusing solely on Ben. They routinely ask James how he is doing and will give him something when they give Ben a gift. James has been able to have several special playdates with friends that were just for him. We have also brought him with us on several hospital/clinic visits and the trip to Burlington so he knows that when Ben goes to these places it isn't all fun and games. Visiting Ben when he is in the hospital has also helped him understand what Ben is experiencing. James really showed his understanding of what is going on when he insisted on brightening Ben's mood when he hit the really low place that several cancer survivior's and have talked to us about. Being a part of the team and involving James has helped us maintain normalcy. Ben looks out for James too. A few times when Ben has received things he has casually mentioned James his twin brother. So James has ended up with a hat or bear too.

            

   On Tuesday I will update this site as quickly as I can. There is no way that Stacey and I will be able to call all of the people who will be anxiously awaiting the news. I will also put the details of the timing Monday.

2/1/2007

    The boys went to school today and Ben is feeling great. He looks just like he did before we started down this road. I look at him and see such a wonderfully healthy child, yet, I know that inside his body is waging a war. 

         

   Benjamin and I are working on a puppet show and he decided we would do a period piece. At this point it is a conversation between George Washington and Benedict Arnold before the revolution. I keep trying to bring in Sam Adams, but, so far Ben keeps objecting. I am not sure when the first performance will be, but, I'll keep you all posted.

                

  I just wanted to make sure that everyone knew what was going on. I will try to add to this later today.

1/30/2007

      The boys went to school today and everyone seems happy. I took the boys to Noogieland at the Capital Region Gilda's House. I stayed in the building, but, left the boys in the capable hands of the staff. They start with everyone in a circle and talk about the previous week and upcoming events in the children's lives. It is really wonderful. As the boys have become more comfortable I have been trying to distance myself from the activities so they could voice feelings they might not want to in front of me. There is also an opportunity for the children to write down any questions they have about cancer and then the staff will try to help them work out the answers in the next group circle. Although the staff tries to keep the children's confidence they will share with a parent some things when they think it is necessary. It also depends a great deal on the age of the child and Noogieland services children right up through being teenagers. Tonight James decided to write a question that he feels the group can help him with next time. He asked if cancer was contagious. We thought we had worked this one out. He is very worried that he might catch it. Previously he had a cut and didn't want to get undressed in the same room with Ben until it healed. When he told Stacey this she thought she had addressed it. It seems we did not. I am going to talk to the School Nurse tomorrow and to the School Counselor to see if they can help. I just thought of something that may have brought this issue back to light. I think James may have seen that commercial on TV about the HPV vaccine that they have developed. The commercial talks about being vaccinated against a virus that causes cancer. It does seem to have been on the TV a great deal lately.

                              

    Ben filled out a different sheet and shared it with the staff member. On this sheet you circle a face that show how happy or sad you are. Many of you have probably seen these before...they have a big smiley face on the left and a frowning crying face on the right with a few faces in between. Benjamin circled the saddest face. In the area where it asked why he felt that way he wrote the word surgery. She talked to him and he said he was sad, worried and scared about his surgery next Tuesday because he didn't know what was going to happen. She talked with him for a little bit and then in his typical 6 year old fashion he wanted to go back to playing and creating. We thought we had this one covered too. We've explained the surgery and talked about it freely with him. Dr Decaprio and Dr Pearce have also talked about it with him. I tried to talk a little about it with him tonight, but, I didn't want him to know that what he wrote on the paper in confidence was shared with me. I'll try some more tomorrow and also mention his situation to the School Counselor too. Stacey is going to try to talk to one of the nurses at the clinic or one of the counselors down there. We have been thinking that we are doing such a great job and they seem so happy, but, inside our little boys are facing things no child should face. Not to be maudlin, we are in good hands and have the resources available to get past this hurdle. The Green Drakkoman just needs to adjust the priorities of his team.

             

   By the way the boys absolutely love Gilda's House and it is a great place. Ben is so taken with Gilda's House and the caring love the volunteers show that he has told us several times that he would like to place a flower on her grave as a thank you. At one point he mentioned this as one of his wishes for Make-A Wish. I am not sure if I mentioned this in a previous post, but, a couple of weeks ago they actually chose going to Gilda's House over going to Chuck E. Cheese. A friend of ours named David who knits will be thrilled to know that the boys were able to try their hands at knitting tonight. James proudly announced to his mom and grandmother that he did 5 stiches tonight. They tried it and they had fun; although they didn't get very far.

1/29/2007

     Today was basically a recovery day for Stacey and me. We went to clinic and they gave Ben a clean bill of health for the surgery. Now we just have to keep him healthy until next Tuesday. The fundraiser yesterday was exhausting on a number of levels. I basically ran around trying to greet and thank as many people as possible, help out with the take out area, talk to television reporters from 2 of the local stations and wrangler Ben and James. Ben and James really enjoyed themselves. The highlight of the evening for them was a visit from SpongeBob Squarepants. He stopped by twice. The folks who were present were lucky enough to hear me sing the theme song of the SpongeBob Squarepants cartoon show. I was backed up by the Shaker High School Jazz Ensemble and they were fantastic sports. The 2nd time I did it with one of their singers and I think I was actually in tune. Seeing the boys hug SpongeBob and dance with him as the Jazz Band play some music fitting for Bikini Bottom (that's the name of the SpongeBob lives). The second time I danced into the audience and pulled kids up to dance with SpongeBob and the boys. The first person I picked was a woman sitting right up front. She had a beautiful smile and I noticed a twinkle in her eye when she watched the boys dance. She was the only adult I could get to dance. I gave up on the adults after the second try. The kids were much more enthusiastic. I found out later that the woman I picked was a teacher at Blue Creek that I hadn't met. She introduced herself to me later and thanked me involving her in the dance and for the fundraiser. I am not sure how many times I said "Thank you," but, I heard "Thank You" more times than I said it. We served over 1700 dinners with an ALL volunteer staff and people kept saying, "Look at what you've done to show people the great community and spirit we have here." "Thank you for reminding us all about all the positive things people have to offer." It was overwhelming and there were many times when I couldn't even speak. For those of you who were there please share your experience with us via email or in the guestbook. If you have any great pictures we would love a copy. I totally forgot to take pictures. If there are any video recordings of my SpongeBob theme song performance please destroy them - only kidding.

 

     Many people who could not attend the fundraiser sent in contributions and some are still coming in. The fundraiser was a huge success and it was indeed wonderful to see so many people. I know there were quite a fwe people I missed talking to. We don't know how much the rest of Ben's treatments are going to be. This fundraiser has meant that we don't have to worry for some time now. Since the fundraiser was put on by an amazing group of people on our behalf we have discussed with members of the committee throughout this process about how they intend us to use the money. The primary purpose for the money and all of the money that is donated to the Ben Fund is for Ben's Healthcare. The committee also insisted that we use the fund to take Ben and James to Disney World when it is over for what will undoubtedly be a much needed vacation.

                

     We will use whatever money we raise over and above these costs to form The Green Drakkoman Foundation. We will dedicate the Green Drakkoman foundation to help fund research in developing treatments and finding a cure for Osteogenic Sarcoma, Ewing’s Sarcoma and other bone cancers that affect primarily children. These cancers are best treated when found early so we will look to fund ways to test for them or the propensity for there development. We will also assist with research in therapies and prosthetics for post operative patients. The Foundation will also look for small ways to assist the families of patients with the small things that would help them cope and get through the ordeal of chemotherapy and hospitalizations. We are paying careful attention to our own experience and we have already found some small things that would make a big difference in these families’ lives. One example is providing clothing detergent in the laundry room the hospital provides for the families to use. The largest focus of the Green Drakkoman Foundation will be to increase awareness and mkae sure families don't feel like they are alone in their battle. Benjamin wants to make sure that every child and family knows that they are not alone and that The Green Drakkoman is along side them in their fight and he will never accept defeat. We have already talked to folks at Carrabba's and they are interested in doing at least one major fundraiser a year for the foundation.

     

      I really can't say enough about the generous and continuing response from our community. I do mean community in the truest sense of the word. Our community is not made up of just those who live within our school district, town, county, state or even country. Our community is all of those with whom we commune. Our community is all of those people that we come into contact with and the fundraiser last night touched all of us with the realization of how many lives we interact with. I am finishing this very wordy update from a punchy, overwhelmed father of 2 fantastic boys and husband of an amazing wife with the words that I spoke to many of those eating at the 5 pm seating. It applies to all of you who are reading this, sending you kind thoughts and praying for our family.

                                

   "First I would like to thank Aleica...Aleica came to us and said that she and some others wanted to put on a small fundraiser to help us with the financial burden and to show Ben how much love and support he has. We disussed it and said that we would take a page from the Amish and "We would humbly accept whatever was given." She told us she had talked with Tad at Carrabba's where she works and he told her they would like to do something....maybe open the restaurant early on a Saturday afternoon and try to fill it with people....when she brought it up at the next PTA meeting there was an immediate and large response. Over the next couple of weeks the dream team came together as others joined the committee....Thank you...As the scope grew Carrabba's never hesitated....their staff and management just kept saying,"Ok we'll do it."....Not only did the staff volunteer to be here, but, in order to keep the restaurant open this evening Carrabba's brought in people from their other restaurants to cover and at least one of these fine young people drove home from college to be here....Thank You...Pepsi, Price Chopper, Constructive Copy, Zone 5, SHS Jazz Ensemble, Ben & Jerry's, The Party Warehouse, The Mailworks, ICB Specialties, North Colonie School District Families, Creatacor, and Quant's Food Service and the other businesses listed on the backs of the t-shirts worn by the volunteers barely had to be asked before they were completely and entirely on board saying, "Whatever you need, whatever we can do for you....for Benjamin." The school district has been phenomenal...On the back of the t-shirts it was decided to not specifically mention teachers, staff and administration of the scholl district because they are included in our families....The North Colonie School District is what it is because it is a school district that not only educates....it LOVES...Thank you...Look around you....Many of the people you see here are your friends, family, acquaintances....some are total strangers....You all reflect the worlds religions, races and generations....You are our community....You are Love....Truly the words thank you are not large enough to encompass your generosity....The only gift I can think to give you all is the realization that you are an amazing group of people....Each of you is an example of all of the good that is in the heart of man....you embody love....while I was working on this James was sitting next to me and I asked him what he thought about this message....James said (with only a slight paraphrase) remind you to always remember the good that is within you and celebrate it with great joy."

1/27/2007

    Friday was a truly great day. Ben has been off chemo for a while now because of the postponing of the surgery. His color is great and he is eating like a champ and has put back on the majority of the weight he lost. He is almost as active as he ever was. Although sometimes he does seem to get tired a little quicker than he did before all this. We can't let him stay off the chemo for too long. Onone hand it is great to see him be incredibly healthy on the outside, but, on the other we know that the cancer does not know the meaning of the word truce and the evil alien has not yet been removed. The February 6th date for the surgery is a date we can't let pass. He will either have to have the surgery that day or immediately go back on chemotherapy for a complete cycle. We don't really want that to happen because then we are outside the normal treatment protocols. Back to why Friday was a great day. First of all both he and James went to school all day on Friday. James received a 100 on his spelling test and Ben did well. As you can imagine he has missed a great deal of school this year. His teacher has told us that considering the amount of school he has missed he is doing wonderful. In Math and Reading he is scoring somewhere around 80%. He will be receiving extra tutoring soon to make sure he is where he should be.

      

     After school I took Ben and James to the last hour of the Siena College Women's Water Polo Teams Friday practice. Coach Rob Swingle had invited us to come to the practice. The boys were excited since the moment I told them they would be going on Friday. We arrived as they were doing passing and defending drills. The boys loved it and the team members immediately welcomed them. We sat quietly as they finished practice after the initial greating. Ben and James asked him if the could call him "Coach." Of course he said yes. Ben's favorite player was there and he turned a little shy when all the girls were out of the pool. Both boys received wet hugs and Ben was made a member of the team. He beamed the whole way home and the first thing he said to his mother was, "I'm on the team. They put me on the team." They gave him a team shirt that only members of the team get and an official game ball that was signed by the entire team. Both of the boys are looking forward to going to the games and supporting their team. James said that Water Polo was like basketball and soccer combined and played in the water. Coach Swingle added hockey and the 3 of them agreed. It looked to me that you could have added a little wrestling too. You have to be a great swimmer to play water polo and have a great deal of confidence in your abilities.

      After the practice we went out to dinner with the boys great Aunt Carol. Ben chose the restaurant and once again it was Friendly's. I think I ate at least 5 meals last week at Friendly's. Ben likes their chicken fingers, but, I think mostly he likes the Cany Shop Sundae at the end of the meal.

         

      Their mother and I then took them to the Blue Creek School All Family Dance Party. The PTA sponsored the dance with Radio Disney putting on the music. There were dance contects, prozes, a little karaoke and tons of fun. Ben and James both love to dance and joy in the school was great. We didn't see too many 5th and 6th grade boys so I guess the enthusiasm may change some as they grow older. I hope they keep dancing forever. Many of the children and a couple of the adults came in costumes of their favorite Disney character. Ben insisted on wearing a tie and looked quite cute. The batteries died in our camera so I don't think we have a picture. He said he was dressed as the Green Drakkoman when he is incognito or disguise. My favorite costume was one of the boys friends who was dressed as "The American Dragon." It is a currently popular cartoon character. The President of the PTA had on a great Winnie The Pooh costume. At one point we were having a serious conversation and I couldn't help, but, note the wonderful oddity of having an adult conversation with Winnie the Pooh. Quite a few of the parents came up to us and told us it was wonderful to see him in such great shape.

    Tomorrow is the big fundraiser for The Ben Fund at the Shaker High School. I am sure it is going to be an incredibly hectic and wonderful day. Over 1500 reservations have been made and they are anticipating quite a few walk-ins. There are over 100 items in the chinese auction and many of these items are awesome. There will be a cart with Ben & Jerry's hand dipping ice cream for folks and a bake sale. The support is overwhelming at times and I will do my best to capture the spirit of the event in tomorrow's update.

1/25/2007

    Well, the last couple of days were interesting. Tuesday night we went to a PTA meeting and found out some details about the upcoming fundraiser on Sunday. The people arranging it have succeeded beyond anyone's expectations. Our community has so totally embraced this fundraiser that there are 1500 reservations for the dinner, almost 50 items for the chinese auction, and so many people have offered to bake things for the bake sale the woman in charge said she started turning people down. What an awe inspiring group of people and businesses. Today Ben received a care package from Brownie Troop 505 from Southgate Elementary School and it contained tons of things to pass the time when you're in the hospital and even 2 new pairs of pajamas. The pajamas have basketballs and a bulldogs mascot. Blue Creek's mascot is a bulldog.

   

    We had prepared ourselves mentally, emotionally and spiritually for Ben's surgery yesterday and it was quite the letdown. It is for the best though. Now Ben can make it to the fundraiser without us worrying about him. He really wanted to attend. Tomorrow he and James are going to the Siena College Women's Water Polo Team's practice after the boys are done with school for the day. Ben is really looking forward to that. He asked me if his favorite player will be there. I told him that I thought she would be. He was told to expect all the girls to give him big wet hugs when he shows up.

     The drugs he is on to clear up his lungs seem to be working well. Of course today I started coughing. A reporter from the Times Union came today to talk about with Ben about the Green Drakkoman and their battle with the Evil Alien. It will be interesting to see what the article ends up being about. Ben bombarded her with stories and we filled her in with many of the details of his battle. He is eating like a champ and has put on the weight he lost. He should be in good shape for our visit to the clinic on Monday for the doctors to listen to his lungs. We talked to Dr DeCaprio's office today and Ben's surgery has been rescheduled for Tuesday, February 6th. We will definitely be keeping everyone updated via the web site. A couple of friends showed up at the hospital to help support us on Wednesday and they called the house worried that something had happened when we didn't show up at the hospital. We didn't know they were planning on being there. Tomorrow I will be putting photos from our visit with Tony Crudo and the Watervliet Fire Department last weekend on Ben's page. The boys had a great time.

1/23/2007 afternoon

   Ben has been fighting a cough for a while now. I am pretty sure I mentioned it before. The doctors have been trying to clear it up before the surgery tomorrow. Unfortunately, when they checked his lungs today there was still too much gunk in his lungs to risk a lengthy surgery under general anesthesia. Ben's surgery tomorrow has been postponed until next week. He is now going to be on even stronger medicine to clear up his lungs and they'll listen to them again on Monday. We have to talk with the surgeon to confirm the exact day next week for the surgery. I will keep everyone updated on here.

                                            1/23/2007 morning

  Stacey and I were just talking with someone and she told us that she checks the web site every day. When there aren't regular updates she gets a little worried and calls folks she knows to make sure everything is ok. I will tell everyone what I told her. Usually when there aren't updates for more than a day or so it is because regular life is getting in the way...most of the time it means I fell asleep when putting the boys to bed.

       

   Tomorrow is the day of Ben's surgery. I have detailed the surgery in earlier updates. We have to get to the hospital by 6:45 am for prep. The surgery will start sometime between 8 and 9 am and it can take from 3-10 hours. Dr DeCaprio expects it to be around 5 hours. It is a very intricate surgery and because Ben is only 6 there will not be a great deal of room to work. There are major blood vessels and nerves that the surgeon has to be very careful with in addition to working with the muscles. Dr DeCaprio is very skilled and compassionate. We have heard from several doctors that we are putting Ben in the best hands possible for the job.

              

   Today at the elementary school the boys attend they created a very special day for Ben. We went into the school to see the hats and it was pretty cool to see all of the kids and adults wearing hats. Several of the female teachers had on tiarra's and the kids were wonderful. Ben wore his Merlin's cap from Disney and James wore Ben's favorite Boston Red Sox Champions

hat. I can not begin to tell everyone how amazing our school district is. The support we have been receiving from everyone associated with the schooldistrict , the Superintendent of Schools, the PTAs, the High School, Middle School, All of the Elementary Schools, parents, students, teachers, staff, administrators have been amazing. I am not just saying this to make our property values go up, but, we live in a phenominal community. We receive calls, emails and letters from relatives all over the globe telling us they wish they lived closer or could come and help us out. We tell them that they have nothing to worry about between the schools, our church, our Moms, our local friends and family, our doctors and medical staff, the people I work with and the Green Drakkoman we are in great hands.

                           

                         

   On friday the boys participated in their Cub Scout Packs Pinewood Derby. It was a blast and the boys cars did very well. I was surprised at how many washers I needed to screw onto their cars to get them close to the 5 ounce weight limit. For those of you who have no idea what I am talking about the boys built cars out of a block of wood, 4 nails and 4 wheels. I helped with the power tools and a couple of the clear coats of paint. I also applied the weights. They were completely the boys designs. The cars do not have motors, it is all about gravity. The cars run down a track that is about 30 feet long with the first 5 feet being sloped. They race each other and win trophies, medals and ribbons. James won 2nd place in the Bronze division and Ben won 3rd place in the Tiger Den and then 1st place in the silver division. Ben had to race James in their Tiger Den 2nd round and he won. That is why James was in the Bronze division. Each car ended up being in minimum of 3 to 6 races. Here are their cars and trophies.

                                  

                      

   Since Ben's last visit to the hospital we have been trying to get him healthy and ready for the surgery tomorrow and we have also been trying to fit in school and as much fun as possible. He has been eating well and put on much of the weight he had lost during the last chemo treatment and mouth sores issue. He bounced back beautifully and seems ready on all levels for the surgery. He has told me that he is a little nervous and afraid just a little about the surgery. One of his concerns is about being able to draw after the operation. Today we saw him skip through the hall in school seemingly without a care in the world. If I learn anything from him it will be to find joy in the moment. During the Pinewood Derby he was hilarious and his laughter and joy were very infectious. I wish I had a picture of his "victory" dance that he did everytime he raced whether he won or not. It really wasn't a victory dance it was a celebration of the race. A couple of the other parents commented to me about how happy and healthy he was. He felt very comfortable amongst his friends and their families and really let his joy show. The kids were all fantastic and even though a couple tears were shed by the end of the night they were all racing each other and just having a blast. The adults had to start taking down the track to get them to stop racing each other.

   I have more to say so I'll do another update tonight and I will update the web site as soon as I can after the surgery tomorrow. Even if it is just a one sentence update. 

1/18/2007

   Wow, I can't believe a whole week has gone by without any major issues. We are approaching the date of the surgery and as it comes closer and closer we are preparing our ourselves. Ben has been eating well and is looking and feeling good. Today he had a complete bone scan done to triple check things and it looked as it was expected to look. Ben should be going to school tomorrow.

   Ben received an injection with radioactive dye in it before the scan. We had to wait 3 hours so we took him to a nearby Friendly's before the actual scan. We had a nice meal and at the end of it this really nice woman who had been sitting behind Ben turned and introduced herself - Helen. As Ben was eating his sunday we had Ben joking with him about participating in an upcoming talent show at our church. Helen asked Ben for his autograph as if he was some celebrity that she had just recognized. The pamphlet she asked him to autograph was a yellowed well worn prayer manual. She told him that she was a cervical cancer survivor and he responded, "I'm going to be a survivor of my cancer soon too. I also have a friend Eric who is a survivor." She told him that he had guardian angels and that she was going to pray for him every day. She was a really interesting woman and just exuded a caring kindness and faith. Her party was leaving before us and she asked if she could have a hug from him. I am not sure exactly why and how, but, that hug seemed very special.

    My Mom had been staying with us and she had to go back to Florida on Monday to take care fo some things down there. Stacey's Mom is now staying with us. They overlapped for a couple of days so I slept on a couch duting that time. Before she left we went to dinner at Carrabba's with my sister, the Moms, the boys and Stacey's Aunt Carol. My sister Janine and I were joking before the meal that with Carrabba's generous sponsoring of the fundraiser on the 28th the could dump a dish in our laps and we wouldn't complain. Needless to say the waiter was wonderful and the meal was fantastic. We finally had the opportunity to meet the gentleman responsible for jumping on board the fundraising idea wagon that our friend Aleica created. Every time I hear about the fundraiser is amazes me. So many people are coming out in support of Benjamin and the number of chinese auction items just keeps increasing.  More information about the fundraiser can be found at http://www.arkcharter.org/ben/ben_fund.html  

1/10/2007

     There is a great deal to write about and soon I am going to have to break this into multiple pages. I am learning web design as I go along so please forgive me. Also I am doing this without spell check so watch out for typos. We didn't get discharged from the hospital until 9:30 pm. I am convinced that the reason the resident finally signed the discharge paperwork was because at 9:15 I found him and said,"We're leaving at 9:30 whether the paperwork is signed or not." The discharge paperwork was started before the nursing shift change at 7pm. Our attending physician told us we would be on the road by 7:30. We had to make a 3-4 hour drive to get to Burlington after we left the hospital and the resident and nursing staff new it. The nurses were trying, but, we had to wait for the resident to finish and then sign it. We arrived at the hotel in Burlington at a little after 1 am. The boys were asleep, but, the woke up so I didn't have to carry them to the rooms. Needless to say everyone fell asleep pretty quickly. Ben's MRI appointment wasn't until 1pm and we didn't have to be to the hospital until 12:15. After we finished breakfast we had promised the boys we would take them to the Vermont Teddy Bear Factory just south of Burlington so we headed there before going to the hospital. Miss Kathy (his first love and preschool teacher) had given him money to buy an outfit for his teddy bear and we had promised both of them that we would let them make a bear there. They loved it and we managed to get out of there in enough time that we arrived at the hospital at 11:45. The hospital was the most efficiently organized hospital I have ever seen. As we entered from the parking garage there were 3 people waiting to help us with directions. The registration desk spead us through the process and after verifying information we were at the MRI unit by 12:15 and we were walking through the well marked corridors and waiting for a couple of elevators for most of that time.The woman at registration had written out directions in case we ended up lost. Ben and I would go into the MRI suite and James and his mother waited in the waiting room. Ben and I had to strip down to our underwear and put on those really fashion forward hospital gowns that they all use. Ben was on his back and going into the MRI magnet a little before 1 pm. We were amazed at the timing of everything. Ben did a great job and I was very proud of him. I was also incredibly proud that I work for the company that made the magnet Ben  was in. I thought of all of the men and women that I work with, including Ben's Uncle Rick who actually tests the magnets and their components, who probably forget that their daily work is helping to improve the quality of life for people and save lives. When he came out of the magnet for the last time just after 3 pm one of the Radiologists asked him, "Do you know how many 6 year old boys can stay that still and do what you just did without any sedation at all?" He smiled and said he didn't. She looked at him with a big smile and said, "Try ZERO!!" as she made a big zero with her fingers. She turned and looked at me and said , "Better than most adults too." When I told Stacey she laughed because every adult she saw come through the waiting room while we were there was either already sedated or took a pill before going in. If any of you have had an MRI you know exactly how amazing Ben's willpower and control were. They are very noisy and the space is rather small. Although the Philips magnet has a larger diameter bore and was not as deep as the GE magnet ben was in for his earlier MRI. If you have know Ben and have seen him at church or concerts cover his ears when there was load applause or organ music you would be even prouder. He did it on his terms and conquered his fear with grace. James on the other hand waited patiently in the waiting room the entire time. He didn't complain once and was delighted when I managed to talk one of the Radiologists into letting me show him one of the magnets through their viewing window. Stacey told me afterword that he had asked if he would be able to do that. We were prepared with a couple of toys and James managed to take control of the TV when he and Stacey were left alone in the waiting room. Nobody dared to change the channel off of Cartoon Network once he got rid of CNN. We had dinner at Friendly's and had a great ride home. It was really nice to have time to spend together and almost seemed like a mini vacation. We lucked out because I had enough Hilton Honor Points to get us a free nights stay and breakfast and the dinner at Friendly's was covered by a gift card someone from our church had given us. It surprises me how blessed and thankful a person can be during a time when they are facing one of a parents worst nightmare. My brother was right when he said, "You have an amazing group of friends." I added, "Family too," but, I'm not sure if he heard me.

   Today we met with Ben's surgeon and discussed the surgery. It will be on January 24th and is a very complicated surgery. It will probably take 5-10 hours. He will be in the hospital after the surgery from 3-5 days. It would be really nice if he can come home for the 28th so he can make an appearance at the fundraiser friends have organized for him. The MRI confirmed 2 things that Dr DeCaprio had suspected. Of course one of them is good and one not so good. The not so good one is that the osteosarcoma goes further down his bone towards his elbow than was apparent on the previous images and films. The good one is that the osteosarcoma does not go into his shoulder and although it involves the upper growath plate a liitle it has not gone beyond. The surgery Ben will be going through is called Limb Salvage Surgery and involves removing the cancerous bone and tissue and replacing it with a donated bone from a cadaver. I don't know about you, but, I never thought about donating my bones for transplant before, only my organs. The technique being used is called an allograft. It is going to be very tricky because of the placement of nerves in the upper arm and the tight space the doctor has to work in. He has to be careful not to stretch the nerve fibers in addition to all of the removal, connecting and reconnecting the muscle, bone and other tissue. We are placing one of our most precious things in this mans hands and we have complete confidence in his abilities. He did tell me he had to go home and remove a tree from his driveway that blew over today. I told him to be careful with the chainsaw.

   I will tell you more about it and I haven't forgotten about the Elmo Present Story I haven't finished for you yet. It's late and my carpel tunnel is acting up. I'll have more for you tomorrow. I know that Dr DeCaprio's wife and neighbors read this site so if I have not explained it well or misused some phrases please correct me. I fixed the link to Ben's friend Kyleah's web site in the last posting so it should work now.

1/8/2007

   It was a very long weekend and Ben did not receive his chemotherapy. Instead he stayed in the hospital and received fluids to keep hydrated and morphine for the pain of his mouth sores. It hurts when he talks, smiles or laughs so he has been very quiet and a little down in the dumps. James, his twin brother, new he was feeling low so he insisted on drssing up in a funny costume on Sunday and had me put together a bag of pranks to make his brother laugh. While he worked on a costume with his GrammaMac I went to the store to buy some items for his bag of pranks. At church today a woman came up to me and gave me some gift card to a large retail store that I normally don't shop in so I decided this was the perfect mission for these cards. I went to the store and found some prank items including a whoopee cushion, fake bad teeth, glow mouth inserts, large money, several little wind up jumping, rolling and walking toys. I also put some of the boys magic tricks into the bag. James was great as he walked through the hospital he was putting smiles on peoples faces and he knew it. As every person smiled at him he walked a little taller carrying his bag of pranks (really one of his mother's purses) - a man on a mission. He managed to make Ben crack a couple of smiles even though it hurt. Ben kept the whoopie cushion and used it when his nurses and PCAs came in to check on him or take his vital signs. It was funny because he couldn't blow it up so we would blow it up and he would keep it on his bed until he heard them coming. Then he put it behind his back and when they came to his bed he would lean back and make it toot or double toot. Ben would smile, beam and even managed to laugh once. It's very amusing in a sick way to see someone laugh and then immediately hit the button to release morphine into their IV. One of the PCAs thought he was going to have a big mess to clean up. I guess there is nothing like a good farting noise to bring joy and laughter.

  

   Tomorrow we will be in Burlington VT for his MRI and then we will be back home. He may or may not go back into the hospital on our return. Ben is looking forward to this trip because his preschool teacher has given us money to purchase a firefighter outfit for his Vermont Teddy Bear Factory dog and we have promised to take him there after the MRI. He also thinks it is pretty cool that the magnet in the MRI machine in Burlington was made where I work and that his Uncle Rick works there to. In fact Uncle Rick actually did some work on this magnet, testing parts of it to make sure they worked correctly. I checked when it was manufactured and both of us were here when it was made. Rick and I also think it is kind of cool.

      

    We will be finding out later on today whether or not the Doctors are recommending another chemotherapy session before his surgery. I will keep you all posted here of any new developments. Benjamin's mood is a little better today. He is going through a sad and angry stage that is not too surpricsing considering everything he has been through in the last few months and what he has to look forward to. The visitors he had over the weekend and your entries in the guestbook have helped cheer him up. His brother's antics were a big boost too. Yesterday he also had time to work on painting his Pinewood Derby car. The Cub Scout Pack we belong to is having Pinewood Derby races on 1/19. Ben and James are both looking forward to the competition. They have designed 2 very uniques cars. I will put pictures on the site when they are finished.

    

Check out James' page. I have put some jokes on there and a prank that he wanted me to post. You may also want to check out another patients web site. Kyleah is a girl that we met at the hospital and she has taken a shining to Ben. She enjoys seeing him and working on craft activities with him when they have them in the activity room on the pediatric unit or RMH Room. Her web site is

www.caringbridge.org/visit/kyleahburton. She is a very special young woman and has offered to talk to Ben about his feelings. We want to get an ok from her mother first.

1/5/2007

    We are getting ready to go to the hospital today for Ben's last chemotherapy treatment before his surgery. The phone just rang and there is no room for him to receive the treatment. The pediatric floor is completely full. Usually when there are a large number of patients they actually move some of the teenagers to other units to make room for the younger kids. We are going down to the hospital anyway because Ben is having a tough time right now and we want to make sure everything is ok.

   We knew that we have been having a hard time getting Benjamin to eat and drink since Wednesday. It was getting harder and harder and the reason was that is mucos membranes were breaking down. His mouth and throut were getting sores and he was hiding it from us.  We also knew that he was getting dehydrated. The Doctors at the hospital told us they would admit him to treat him for the dehydration and mucos membrane issues. We will start the chemotherapy again after these issues are taken care of. At first it looked like we would be placed on one of the adult floors, but, a room opened up on the Pediatric unit. Ben was admitted to the hospital and he will be in there for a while now. We may take him out of the hospital to go to the hospital in Burlinton, VT for his MRI on Tuesday, but, then it will most likely be a return trip to the hospital here for further treatment. We will know more when we talk to the doctor today. Ben is in a great deal of pain. When your mucos membranes break down it is like having the worst sore throat you've ever had, but, all over. He is receiving alittle morphine to ease the pain. The amazing thing to me is that he hasn't complained once about the pain. No whining, no crying about it, not even a whimper - he is just very quiet. At the same time he loves seeing and being with people.

1/3/2007

   The weekend went well. Getting the dinner to the Ronald McDonald House Room took us all longer than we anticipated. I didn't get there with the mashed potatoes until 7 pm and the rest of the dinner...and I do mean rest of the dinner arrived shortly after. Our friend Debbie prepared a large ham, green bean casserole, corn, dinner rolls and sandwich rolls for the leftovers, mayonaisse, mustard, two kinds of cookies, bananas, strawberries, doritos, kissables, twizzlers and a few other things I am sure I have left out. Her daughter who is only a couple of years older than our boys took $20 of her own money to buy the cookies, fruit and candy. They also brought a small gift for the boys an Elmo TMX for us to give to another patient on the pediatric floor. Benjamin loved having them visit and gave them the tour of the entire pediatric floor and RMH Room. They played air hockey until Ben was exhausted. I think Debbie and her family were a little disappointed that there were not more people to share the dinner while they were there. Soon after leaving I was organizing the food to get ready to put it in the refrigerator when 3 Moms walked into the RMH Room. It was about 8:45 pm. The room officially closes at 9pm. One of the moms has a daughter that has been in the hospitalfor over 2 months straight and we have gotten to know them during our visits. The other mom has a son twice the boys age who has been in and out of the hospital for almost 6 months. The 3rd mom has a baby in the Pediatric Intensive Care Unit and she is sleeping in the one of the sleeper rooms at RMH Room. She has only left the hospital a few brief times over 3 or 4 weeks because her baby daughter is struggling to stay alive. She was so grateful for the home cooked meal she started to cry. We talked for a little bit and she told me a story about when she was 16. I think she is in her mid 20s now. As part of a school service project she had to pick something to do as a volunteer. One of the things on the list was to bake cookies for the local Ronald McDonald House. It said on the list that "a cookie would put a smile on someone's face and let them know that someone cared." At the time she thought it was little hokey, but, she picked it because it was one of the easiest things. As the 2 of us started to cry she said,"Now that I'm the recipient of the cookies I know how important and special those cookies I made were." All I can tell you is that complete dinner meant so much to these moms. The one mom with the daughter who has been in the hospital took a huge bowl of strawberries to her daughter. She absolutely loves fresh strawberries. She choked up when I told her that my friends little girl who is the same age as her daughter made her parents take her to the store to buy those strawberries with her own money.

   

   I'm sorry I'm going to call it a night. I'll finish the Elmo story tomorrow and catch you all up on Ben. We will be going into the hospital on friday for his last chemo treatment before the surgery that is tentatively scheduled for January 22nd at Ellis Hospital.

12/28/2006

Ben and James are enjoying the week off from school. A couple play dates have had to be cancelled because it seems there are a couple of stomach and cold bugs sweeping through their friends homes and nobody wants to make Ben sick. Tomorrow Ben will be admitted to the hospital for the weekend to receive his next chemotherapy treatment. I have to try to find some silly pajamas before the weekend. I try to wear the silliest pajamas I can find when I am staying at the hospital with him. It started as a way to make him smile either just before he went to sleep or when he woke up in the morning and now it has almost become a ritual for us. If anyone has ideas of good places to get silly pajamas send me an email at greendrakkoman@hotmail.com. Along with a family from our church we are bringing a ham dinner to the Ronald McDonald House Room at the hospital. The RMH Room serves all of the families of the patients of the Pediatrics Unit, Pediatric Intensive Care Unit and Neonatal Intensive Care Unit. We mentioned at church that when someone brings in food or treats to the RMH Room it is greatly appreciated and disappears quickly. Our friends immediately said, "I have an extra ham for Christmas let's doa dinner for the room." After coordinating our schedules it seemed tomorrow night would work the best for both families.

                     

   Like many young boys Benjamin wants to be a Fireman when he grows up. He says it with such conviction and seriousness it sounds like he is already in training. He has talked about becoming a fireman since he was 3 years old. He has changed it slightly since he was diagnosed. Now he wants to be a Fireman-Doctor just like the ones who ride in the helicopter he can hear landing on the hospital. We explained to him that they are called paramedics, but, he prefers Fireman-Doctor. The son of a good friend of ours and Ben's first love - his pre-school teacher - is a fireman at a local fire department and wanted to do something special for the boys for Christmas. She managed to get the boys hooded sweatshirts embroidered with the official insignias of the fire department where her son works and their names. The sweatshirts were a big hit.

  Last night after dinner we all played UNO Attack and then the boys took their baths. After bath time the boys wanted to play The Game of LIFE that they gave to their mother as a Christmas gift. It was a very thoughful gift that Ben picked out. He remebered that his mom had said it was one of her favorite games when she was young. The game he picked out though was the SpongeBob Squarepants Bikini Bottom Edition. We had a great time playing the board game together.

           

   We aren't sure what time tomorrow we will be admitted.  It looks like it might not be until the afternoon. I will update the sight sometime over the weekend.

12/27/2006

  Yesterday we went to clinic and Ben's blood levels were tested. I am never sure how complicated to make these explanations. It was determined that he would not need the expected transfusions this week. Hurray!!! one less day in the hospital. Dr Pearce told us that she was very glad to see Benjamin in the clinic. She hadn't told us, but, he was on her list of patients she expected to see admitted over the long weekend. The transfusions he went throguh last week and the antibiotic and other medicines kept him home for Christmas. He is still fighting a sinus infection so she added another antibiotic to his medicine list. He is also fighting a viral inflammation in his lungs and for that he is just using an inhaler that helps keep his lungs open.

                        

     I left off a Christmas morning story from the site that I have decided to tell everyone. Some folks may find it a little disgusting so if you are the queasy type skip to the last sentence of this paragraph. On Christmas morning Benjamin woke up just in time to make it to the bathroom to vomit. His Mom comforted him and when he was finished and cleaned up he crawled into bed with us. Ben, James, Stacey and I just stayed there for a little while and talked about Christmas, the baby Jesus and Santa. It was really sweet that although they knew there were presents from Santa downstairs they were enjoying the quiet family time and not chomping at the bit to go open presents. We called a couple of relatives to wish them Merry Christmas and then I think I was the first person to bring up going downstairs. We ate a little breakfast and then the boys took down their stockings and went through the small gifts, candy and toothbrush that Santa had left in the stockings hung with care. It was after the stockings that Benjamin got sick for a second time. He seemed fine after being cleaned up and then I went to give him something, I think it was actually a piece of candy - his reaction was not what I expected. He started crying and running from me. He was on the verge of hysterics and I didn't know why. He ran to his Mom and she talked to him quietly and calmed him down. It turns out he thought I was trying to get him to take one of the anti-nausea drugs that he hates. He told her with a serious tone, "I don't want to take it, I don't need to take it. I prayed for my Christmas miracle and I won't throw up again today. My Christmas miracle is to not be sick today so I will be fine the rest of today." Yesterday morning he reminded Stacey about his Christmas miracle and said to her with great joy, "I told you my Christmas Miracle would happen and I would be ok. He didn't get sick again until last night. I never in my life imagined that a 6 year old boy would pray to not throw up as his Christmas Miracle. At that moment I realized that there were many children across the globe with similar and even more heartbraking Christmas Miracles in mind.

       

   Ben and I have been going over many Green Drakkoman stories and I am going to add a Green Drakkoman page to the web site. I am also going to have to break some of these pages into smaller pages because they are getting very large and some smaller connections are starting to choke on them. I have been asked by many off you how I made snow for the boys. The following link reveals my secret - http://www.stevespanglerscience.com/product/1262

         

12/25/2006 - Christmas Day

    MERRY CHRISTMAS !!!!! I have to get back to family stuff, but, I wanted to take time out to say thank you to everyone and we all hope you are having a very Merry Christmas. Tomorrow Ben will be having his usual blood tests done and then he will be getting a transfusion of Red Blood cells and Platelets. It will be an all day affair. We are having a wonderful Christmas. I even made snow for the boys.

12/24/2006

    Happy Christmas Eve !!! It is really 2 am and Stacey and I are just finishing up getting the presents wrapped and under the tree. A few other housekeeping chores are going to wait until morning. The nice part about having our family over is that we don't have to have the house too spotless. After all there wouldn't be anything to talk about. It really looks and feels like Christmas. The presents under the treee that are marked from Santa really are from Santa. The extra expenses that we have had lately meant that we were going to have a much smaller Christmas than we have had in the past. Then we received a couple of gift cards from the teachers and staff at the boys school with a note to use them for Christmas. We used them to buy gifts, groceries and to pay a bill. It looked like we were going to be able to give the boys a good Christmas. Then we received a call from a friend who wanted his workplace to adopt us for Christmas. We told his wife there had to be someone else, but, she asked us to, "Please let us do this for Benjamin and James." We agreed and gave her the list she asked for of several items the boys had mentioned. The very next day we received a call from a gentleman at our church and a group of older kids who perform plays wanted to be Santa for Ben and James. He told me that it was the kids idea and they had raised the money to do it. I agreed and mentioned at least one thing I couldn't find that I had wanted to give the boys. He was so excited when he told me he found it. I just finished putting all of the presents around the tree. The Christmas that was going to be sparse is now overflowing with love and thoughtfulness. The boys believe in Santa Claus and so do I. The really amazing thing to me is how thankful everyone has been when I try to thank them for their generosity.

                      

  Tonight we went to the 7:30 service at church and the boys sang in the Children's Choir. It was really sweet. There was a chorus of angels, made up os the younger girls, complete with robes and halos. The church was packed with people Ben and James sat on our laps. I have always been amazed by the attention Ben pays to the service. He said the Lord's Prayer with everyone and listened intently to the sermon. He even shushed James a couple of times. When we arrived hiome they wanted me to point out Jesus's star in the sky. We discussed which one it could be. I tried to explain to them that we weren't seeing the same stars in the sky and that the star they were looking for was special and in the sky a long time ago. James asked me,"How many days ago is 2000 years?" I love the easy questions.

12/20/2006

    On Monday we took Benjamin in for his weekly blood count tests to make sure that his cell counts are within a safe range. It is important to know how his immune system is doing. His red blood cell count and his platelet count were low so he will be receiving a blood transfusion tomorrow and additional platelets. It will take several hours tomorrow so he will not be able to go to school.  Ben has a cough and the "snuffles" - that's his official term for them. The doctor had us get Benjamin a chest and sinus x-ray. It turns out Ben has a full blown sinus infection and a viral inflammation of his lungs. He has been receiving medication and we kept him out of school on Tuesday. Today Ben had a CAT scan and hearing test scheduled. It took most of the day for Ben to receive these. The hearing test was fine. Ben is doing very well and even though this week has been very tiring for everyone it looks like we will not have to worry about whether or not we are home for Christmas. I know I don't have to ask this, but, please keep Benjamin close to your hearts this Holiday season.

                                                     

   Last night Benjamin, James and I went to Noogieland at Gilda's House for movie night. We all watched Elf and it was absolutely magical to hear the 2 of them laughing. One of the adults there told me that their laughter was the best music of the season for her and made her feel the Christmas Spirit. The best part was that it was the second time in 3 days that somebody told me the exact same thing. The whole family was invited to go to a holiday concert at the Troy Savings Bank Music Hall on Sunday and during the intermission a gentleman sitting behind us used the same words to describe how our boys were bringing out the Christmas Spirit for him.

                                                                                              

  A friend of mine's brother Aaron is an artist who works in the game industry. They asked me many questions about the Green Drakkoman and I showed them some of  Ben's stories and forwarded Ben's answers to their questions. It was a really great surprise when Adam brought me a disc with the picture below on it. It is very high resolution so I was able to blow it up to poster size. When I gave the poster to Ben he asked, How did he do it? At last someone who understands the Green Drakkoman. It's perfect, that's what the Green Drakkoman looks like.

12/16/2006

    It is so nice to not be in the hospital this week. Ben is in great spirits and happy to be sleeping in his own bed this weekend. His coloring is a little off, but, he is acting pretty much his usual self. Last night we went to a performance of "Bah Humbug" at the church we attend. The children in it were wonderful and Ben and James loved every minute of it. Their favorite part though was getting the actors autographs after the performance.

     Today the boys waited on our front lawn for a little over 30 minutes as they waited for Santa to pay a visit. Santa was riding through the neighbor hood on an antique firetruck. We could hear the sirens and music coming and going, but, it seemed to take forever before they came down our street. The local fire department brings Santa around for one last visit before he has to go back to the North Pole and rest before his long journey. It's a good things the elves are back in the North Pole getting everything ready for him. The boys are very excited about Christmas this year and the things we are doing seem a little extra special this year.

12/13/2006

   Ben came home Sunday evening and seemed fine. Later that night he began to get sick. The doctors had warned us that on the second and third day after receiving the primary drug in this round of chemo we could expect to see nausea and vomiting. We kept Ben home from school on Monday and took him to the outpatient Children's Clinic for blood work, follow up and to receive a shot of a drug to increase his white blood cell count. He did not like the idea of receiving a shot and decided to head back to the car on his own when his mother wasn't looking. He didn't get very far before she caught him. It took the coaxing of 3 adults and a few tears before he allowed them to give him the shot. Ben's Mom told me, "He had just had enough and couldn't take anymore." After he received the shot he seemed to get a second wind and everything has been fine since. I think it was just the timing of everything and I talked with him about it when I came home from work. We came up with 3 tools that he will use the next time hee needs to receive a shot. They are:

  1. The presence of a stuffed animal for comforting and cuddling is required (Oops! forgot to bring Caymus this time)
  2. A Tootsie Pop to be delivered to Benjamin immediately after shot
  3. Something soft to bite down on while making funny faces just before receiving the shot

 There are a couple of other things he already expects when getting poked: a colorful band aid immediately at hand, his choice of nurse (so far he likes them all)  and a chance to close his eyes and countdown from 3 with the nurse.

   By the way when the Women's Water Polo from Siena visited him they gave him the basketball in the picture just before they left. The basketball never left his side or sight the entire time he was in the hospital. He even slept with it. We even played with it in the Ronald McDonald House Room. I am not sure what is on the floor below, but, no one complained. I did check to make sure it wasn't a patient's room. It is either someone's office who doesn't work weekends or a storage room. Besides we even had some of the staff playing with us.

   He went to school yesterday and today. Going to school means so much to him. He tells me how much his friends and their support has helped him keep so positive. The kids in his first grade class are wonderful and all of their parents should be proud. The only person who has bullied him a little in the whole school is his own brother and even that was a very minor incident. He is his brother after all.

   Benjamin's originally scheduled date for surgery was tomorrow. Because the original donor bone was rejected by Dr DeCaprio the surgery has been rescheduled for the latter part of January. He thinks we will have a better match for Benjamin by then.

   By the way Caymus we have been told that Caymus is the Gaelic spelling of Seamus which is pronounced SHAY-mus. He is Ben's favorite stuffed animal - he does have others that are special, but, Caymus was his first love.

12/09/2006

     Benjamin was admitted to the hospital yesterday for his chemotherapy treatments. He receives 4 hours of IV fluids to make sure he is very well hydrated and then they start the drugs. Ben had an unexpected experience just before the start of the chemotherapy drugs. He had seen a flyer that a group of students from Siena would be coming at 4 pm to the Ronald McDonald Room in the hospital. Ben and I waited there from 2:30 pm until they arrived. I had to leave around 5 pm, Ben's mom planned on staying the night. When I left he and 2 other kids were surrounded by the dozen or so young women and their coach who had come to do the holiday crafts. They were members of the Siena College Women's Water Polo Team. He stayed with them until he had to go back to his room to start his chemo drugs at 6 pm. The wonderful attention he received from these fantastic college students and all of the prayers and love everyone is sending his way helped him have a night last night that didn't involve getting sick. I talked with Ben's Mom this morning and she said he had a great overnight. I'll be with him tonight so I will update the web site tomorrow.

12/03/2006

      It is hard to believe that it is already December. It has really been a whirlwind for us and we have been meeting many other people in the hospital who have found themselves on similar rollercoaster rides. Ben is home now and and James just finished taking their baths and they are putting ornaments on the Christmass tree as I am typing this update. It is an artificial Christmas tree and when we put it together last week Ben wanted us to sit around the tree with the lights on and say a prayer. It was very touching and then the boys lead us in a couple of Christamas carols.

      We took James to church today so he could sing in the choir during the service. The children's choir is really cute and it is always treat when the sing. It is one of the things Ben says he misses. James brought home the materials for the craft project that they made in church school today. James is planning on showing Ben how to make it.

      He is doing very well and tolerated this weeks chemotherapy better than any that he's had so far. He can't wait to get to school tomorrow am. We have to continue giving him the "rescue" drug over the next few days until we go the hospital children's cancer clinic on Tuesday or Wednesday to have his blood levels done. Friday we will be back in the hospital for the hard round.

      Because the surgery is being pushed out to January we are going to be postponing the trip to Burlington until January. The MRI needs to be done after the chemotherapy and before the surgery.

11/30/2006

     Ben is in the hospital for the weekend toget his chemotherapy. He should be coming home Sunday night or Monday morning. We found out today that the donor bone did not meet the approval of our surgeon so he will not be having is surgery on 12/14. The search for the donor bone will continue and it looks like his surgery will be the 3rd or 4th week of January. In the meantime Ben will go through another round of chemotherapy. We were going to have next weekend of, but, now he will be getting the strongest part of the chemotherapy next week. Dr Pearce (Chemo Doc) wants us to go through another round of chemotherapy while we are waiting for the donor bone. Each round consists of receiving 2 different chemotherapy cocktails. The first one is really nasty and takes a great deal out of Benjamin. The second cocktail consists of one primary drug, several support drugs which help with the side effects and then a rescue drug that removes the first drug from his system.He will receive the nasty one next weekend and then he will be off until the weekend after Christmas.  During the weeks after Christmas he will get the second cocktail on the weekends. She is scheduling it this way so Ben will be feeling his best on Christmas weekend. She was telling us how they try really hard to have the kids feel as best they can during the holidays.

     Since his chemotherapy has to be delivered on an inpatient basis we are trying to have the sessions on the weekends. It makes it easier for Ben to be able to go to school. He really loves school and the tremendous support he is receiving from his friends and fellow students help him keep his positive attitude.

     I forgot to tell you a story about Ben. A couple of weeks ago Ben was home for the weekend and went to church with James and me. At the very beginning of the service there are announcements and then David (our minister) talks about everyone in the church that needs prayer and/or assistance. He announced that the church would be helping the Stowell family with meals and that there was a sign up sheet in the Narthex for those who would like to bring meals to the family. Ben looked up at me and said with joy and concern,"There is another Stowell family that comes here, can we help them?" I hugged him and said,"No Ben, it's us that they are helping." 

11/28/2006

     We are taking Benjamin to Burlington, Vt on 12/8/2006 to get his last MRI before his surgery. The doctors felt that the MRIs that we had taken previously were not adequately detailed to prepare for the surgery. Two of my coworkers helped me research the location of the most state of the art facility within a days travel. It turns out that Fletcher Allen in Burlington has a new Philips 3 Tesla MR Suite. The previous images were taken using older 1.25 Tesla MR machines. The stronger, newer machines should provide more detailed images and take less time, putting less stress on Benjamin. The surgery is scheduled to take place on 12/14/2006. Dr Decaprio will be performing the surgery and we can expect Benjamin to spend 10 days in the hospital after the surgery. We will get to bring him home just before Christmas. The surgery will entail removing most of his right upper arm and replacing it with a donor bone. It is very complicated and may take 6 - 10 hours.

   Benjamin has a new sleeping companion. He is now sleeping with the penguin that Eric brought him as well as Caymus.

11/26/2006

      Benjamin completed his second to last chemotherapy session before his surgery. He will begin receiving his last chemotherapy before the surgery on Friday 12/1/2006. Ben was really happy to be leaving the hospital. It is amazing how quickly we have developed a routine around the chemotherapy sessions. We decided to break up the routine this week with a trip through Capital Lights exhibition in a local park. It is a big display of holiday lights that you drive through and is a fund raiser for a local charity. It was very pretty and the boys really enjoyed it. Ben is a little tired, but, he will probably make it to school tomorrow.

 

12/03/2006

      It is hard to believe that it is already December. It has really been a whirlwind for us and we have been meeting many other people in the hospital who have found themselves on similar rollercoaster rides. Ben is home now and and James just finished taking their baths and they are putting ornaments on the Christmass tree as I am typing this update. It is an artificial Christmas tree and when we put it together last week Ben wanted us to sit around the tree with the lights on and say a prayer. It was very touching and then the boys lead us in a couple of Christamas carols.

      We took James to church today so he could sing in the choir during the service. The children's choir is really cute and it is always treat when the sing. It is one of the things Ben says he misses. James brought home the materials for the craft project that they made in church school today. James is planning on showing Ben how to make it.

      He is doing very well and tolerated this weeks chemotherapy better than any that he's had so far. He can't wait to get to school tomorrow am. We have to continue giving him the "rescue" drug over the next few days until we go the hospital children's cancer clinic on Tuesday or Wednesday to have his blood levels done. Friday we will be back in the hospital for the hard round.

      Because the surgery is being pushed out to January we are going to be postponing the trip to Burlington until January. The MRI needs to be done after the chemotherapy and before the surgery.

11/30/2006

     Ben is in the hospital for the weekend toget his chemotherapy. He should be coming home Sunday night or Monday morning. We found out today that the donor bone did not meet the approval of our surgeon so he will not be having is surgery on 12/14. The search for the donor bone will continue and it looks like his surgery will be the 3rd or 4th week of January. In the meantime Ben will go through another round of chemotherapy. We were going to have next weekend of, but, now he will be getting the strongest part of the chemotherapy next week. Dr Pearce (Chemo Doc) wants us to go through another round of chemotherapy while we are waiting for the donor bone. Each round consists of receiving 2 different chemotherapy cocktails. The first one is really nasty and takes a great deal out of Benjamin. The second cocktail consists of one primary drug, several support drugs which help with the side effects and then a rescue drug that removes the first drug from his system.He will receive the nasty one next weekend and then he will be off until the weekend after Christmas.  During the weeks after Christmas he will get the second cocktail on the weekends. She is scheduling it this way so Ben will be feeling his best on Christmas weekend. She was telling us how they try really hard to have the kids feel as best they can during the holidays.

     Since his chemotherapy has to be delivered on an inpatient basis we are trying to have the sessions on the weekends. It makes it easier for Ben to be able to go to school. He really loves school and the tremendous support he is receiving from his friends and fellow students help him keep his positive attitude.

     I forgot to tell you a story about Ben. A couple of weeks ago Ben was home for the weekend and went to church with James and me. At the very beginning of the service there are announcements and then David (our minister) talks about everyone in the church that needs prayer and/or assistance. He announced that the church would be helping the Stowell family with meals and that there was a sign up sheet in the Narthex for those who would like to bring meals to the family. Ben looked up at me and said with joy and concern,"There is another Stowell family that comes here, can we help them?" I hugged him and said,"No Ben, it's us that they are helping." 

11/28/2006

     We are taking Benjamin to Burlington, Vt on 12/8/2006 to get his last MRI before his surgery. The doctors felt that the MRIs that we had taken previously were not adequately detailed to prepare for the surgery. Two of my coworkers helped me research the location of the most state of the art facility within a days travel. It turns out that Fletcher Allen in Burlington has a new Philips 3 Tesla MR Suite. The previous images were taken using older 1.25 Tesla MR machines. The stronger, newer machines should provide more detailed images and take less time, putting less stress on Benjamin. The surgery is scheduled to take place on 12/14/2006. Dr Decaprio will be performing the surgery and we can expect Benjamin to spend 10 days in the hospital after the surgery. We will get to bring him home just before Christmas. The surgery will entail removing most of his right upper arm and replacing it with a donor bone. It is very complicated and may take 6 - 10 hours.

   Benjamin has a new sleeping companion. He is now sleeping with the penguin that Eric brought him as well as Caymus.

11/26/2006

      Benjamin completed his second to last chemotherapy session before his surgery. He will begin receiving his last chemotherapy before the surgery on Friday 12/1/2006. Ben was really happy to be leaving the hospital. It is amazing how quickly we have developed a routine around the chemotherapy sessions. We decided to break up the routine this week with a trip through Capital Lights exhibition in a local park. It is a big display of holiday lights that you drive through and is a fund raiser for a local charity. It was very pretty and the boys really enjoyed it. Ben is a little tired, but, he will probably make it to school tomorrow.

 

11/25/2006

      Today we had a wonderful surprise visitor at the hospital. A young man named Eric, his Mom and sister came to see Ben. Eric is very special and came to introduce himself to Ben and offer him encouragement. Eric is 14 and when he was 12 he was diagnosed with Osteogenic Sarcoma in his right femur. Dr DeCaprio performed the same surgery on Eric's leg that Ben is going to have on his arm. Eric also had his chemotherapy at the same hospital and it is fantastic to talk to someone who HAD Osteo Sarcomoa. Eric walked into the room with a Build-A-Bear workshop penguin in one hand and Crayola Artist kit in the other. At first Ben was a little shy and didn't quite know what to make of his visitors. He thanked them and was very polite. Then Eric pulled out some pictures of him at the Hole in the Wall Camp in Lake Luzerne from last summer. Ben perked right up and it was wonderful seeing the Eric sitting next to Ben on the hospital bed discussing the wonderful time that Eric had and the great fun that Ben may have there next summer. Ben laughed and told some really bad jokes that nobody but he really understood.

     As it turned out Ben and James already met one of Eric's sisters. When Ben was in form his chemotherapy before Halloween there was a little Halloween party on the Ronald McDonald House Room in the hospital. Eric's sister was dressed up as SpongeBob Squarepants and she helped Ben and James paint pumpkins. Later on when Eric and his Mom were talking about Benjamin at home she told them that she had actually met Ben already and that he was a fun kid.

    Although Ben was not his usual self during Eric and his families visit he was indeed overjoyed. When Stacey showed up about an hour after they left Ben couldn't stop talking about the visit. He excitedly told her all about his new friend and what they had in common. At one point he said,"and Eric had 'the virus' on his right side just like me." He also told her that Eric was bored when he was in the hospital too. It was really funny to listen to Ben recount the visit to his mother. Someone listening would have thought that Ben had ben visited by some great star or conguering heroe. I especially liked the part about how "BORING it was when you (me) and Eric's Mom were talking about stuff."  He just wanted to spend time with Eric and his sister.

      Eric if you are reading this you have made a new friend and Benjamin is a great friend to have.

11/24/2006

    We went to the hospital today for another round of chemotherapy. Ben has had several x-rays and it looks like the chemotherapy is doing exactly what it needs to be doing. All of the doctors who have looked at the films have told us they looked great. The first time I looked at them they looked scary to me. I told Stacey that there were definitely significant changes from the first images. I was glad when they told me that those changes were positive and what they expected.

   Earlier this week Ben was given a lovely quilt that was made with Love and Prayer just for him. The fabric was prayed over and made while praying. It was completed during a beautiful and moving prayer service. Each person there lovingly tied a red thread through the quilt while praying for Ben. As he is receiving his treatment I kept him wrapped in the quilt. So far this weekend he has slept better than during any of the other weekends. It is also surprisingly comforting to be thinking as you are placing a quilt on someone that you are wrapping them in prayer.

11/12/2006

      We brought Ben home today in the early afternoon. He has pneumonia in his left lung. They did a blood culture, but, the source of the specific bacteria was unknown. Ben's neutraphil count was 0. Neutraphils are a specific type of white blood cell that is an indicator of the body's ability to fight off infections. When it reaches 0 your body can't fight off an infection. Ben was put on strong antibiotics. Yesterday he received a blood transfusion and this morning he was given platelets (another type of blood cell) before we left the hospital. We will be giving him IV antibiotics at home until we go to the Oncology Clinic at the Children's Hospital on Thursday.

      Ben has a device in his chest called a port-o-cath. It connects right into his aorta (heart) and allows us to take blood for tests or deliver drugs to his bloodstream without having to poke him over and over again with needles. Ben is doing very well and is quite happy to be sleeping in his own bed tonight. We know his spirit is strong.

      Yesterday when I brought James down to see him the first thing James said when we entered Ben's room was, “Can I have a popsicle?" - the hospital has a seemingly endless supply. Ben immediately chided his brother, “Did you come all the way here to see me or to get a popsicle?" James replied, "The popsicle" and then they quickly stuck their tongues out at each other. It was nice to see a healthy dose of brotherly love.

11/10/2006

      Last night around 8 pm we took Ben's temperature and it was 102.8 degrees. We called the Dr's office, put together a bag with his pajamas and things and headed to the hospital. We were immediately put in isolation at the Emergency room. His white blood cell counts had dropped since the previous day and it looks like he is fighting off a couple viruses and a bacterial infection. They put him on IV antibiotics, fluids and took blood cultures. It was not unanticipated that this would happen. The Doctors told us last night that he will be in the hospital for at least 48 hours. Unfortunately, it is a relatively normal occurrence in people undergoing high dose chemotherapy. His spirits are high and he was very funny when we wer packing up to go. As we were about to leave he headed towards his bedroom and I thought he was trying to escape the trip. I asked him why he was going back in his bedroom and he said in a very funny way, "Heellllooooo, I need to get Caymus (pronounced shay-mus). I'm not leaving him alone." For those of you who don't know Caymus is his pet stuffed animal. Ben says it is a yellow Lab. It was the first stuffed animal he was given after he was born and it is well loved. Gramma and Grampa Mac gave it to him. Luckily, Caymus is machine washable - don't tell Ben.

11/9/2006

      The past few weeks have been a whirlwind for our family and there is a great deal to update. First let me say thank you for all of your guestbook postings. Benjamin has been in the hospital every weekend for the last few weeks receiving his chemotherapy. Last weekend he received the chemotherapy drugs that are the hardest on his little body. In between the chemotherapy he received drugs which help with the side effects of the chemo drugs. We brought him home on Monday and learned how to give him IV fluids at home. Monday and Tuesday evenings he received fluids for 15 hours each night. He hasn't felt up to going back to school this week and he has been more nauseous than we have seen him before. Prior to this weekend it was nice to have smiling, joking Ben around and his sense of humor is showing again. He spent time this morning exposing his Uncle Rick to new cartoons and laughing with Rick.

      Last week Ben and I were walking through the halls at his school - I was picking him up to go to the hospital for a clinic session. As we passed a 3rd grade girl said loudly, "Hey you guys are both completely bald." Her tone was such that I couldn't tell if she was trying to be mean or funny. My heart started to sink a little for Benjamin and we both started to turn towards her. She continued on saying, "That's really COOL! You guys look great." Her bright smile said it all and I saw Ben stand up a little taller and I felt my heart grow.

      The school Ben attends has been fantastic. The Principal and The Superintendent are allowing all 1st graders to wear baseball caps. There are 3 1st grade classrooms and on any given day almost all of them wear their hats. Every time I have seen children that are in Ben's classroom they have their hats on. One Mom told me that her son insists that he wear a baseball cap everyday and even made her turn the car around one morning when they forget his cap.

      Ben's favorite baseball cap is an authentic Boston Red Sox 2004 Championship World Series hat that one of the staff members at the school gave him. She has requested anonymity. Sorry Yankees fans, but, Ben is a Red Sox Fan. Those of you who know my love of professional baseball will find this especially ironic.

      We saw Dr DeCaprio during the last couple of weeks and he took new x-rays of Ben's arm. He showed in the images where the chemo has been working on the osteosarcoma. It is definitely having a positive effect on the disease. Benjamin is doing very well. One of the most amazing things about this disease is that the only effects Ben is actually feeling are from the treatments we are giving him. The osteosarcoma was insidiously working inside him without causing any noticeable symptoms. It truly is a miracle that it was found as early as it was.

      We have still not made the final decision about the where and who of the surgery. We will update the web site when we have decided. We want to tell the Doctors first. Please keep us in your thoughts and prayers as we make this decision.

10/19/2006

      On Tuesday we went to the Jimmy Fund Clinic at Dana Farber Institute in Boston for a 2nd opinion on Benjamin's chemotherapy protocol from Dr Holcombe Grier. He and Benjamin hit it off immediately. It turns out that both of them are big Red Sox fans (sorry all you Yankee fans). Dr Grier reviewed the diagnosis with us and encouraged us that we are following an excellent protocol and that we are in good hands with Dr Pierce and the folks at Albany Medical Center. We then met with Dr Mark Gebhardt a leading Oncological Orthopaedic Surgeon who is at the Children's Hospital of Massachusetts General Hospital and a Harvard Medical School educator. He reviewed Benjamin's case and we discussed the surgical procedures that he would recommend. He echoed the opinions and concerns of the surgeon we met with back home - Dr DeCaprio. We also discussed how complicated the limb salvaging surgery will be. It turns out the removal of the cancerous portions of Benjamin’s Humerus (Upper Arm) will be the easy part of the process. In talking to Dr Gebhardt we have also realized that the Microsurgeon who will be responsible for reconnecting blood vessels and nerves is as important as the Orthopaedic surgeon. We have to decide soon whether or not we will have the operation at home or in Boston - Dr DeCaprio and his team or Dr Gebhardt and his team. If we decide to have the surgery in Boston we will be staying there for 3 weeks.

 

10/16/2006

      Benjamin started loosing his hair over the weekend.

 

10/11/2006

      Benjamin has completed his first round of chemotherapy. He tolerated it very well. He definitely does not like being poked with needles or having to take foul tasting medicines, but, he is doing it.

      Next week we are taking him to the Jimmy Fund Clinic at Dana Farber in Boston for a review of his case. The doctors who will be seeing him there are considered to be the 2 top pediatric specialists for Osteosarcoma. Our doctors here at home are wonderful and they recommended that we have his case reviewed at Dana Farber.