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March 15, 2007

By Margot | March 15, 2007

We are on day three of chemo today. We didn’t start until Tuesday so that we could do two big blood draws on Monday and Tuesday for the naturopath so he can measure all kinds of things in Sam’s blood. The blood draws were very very involved and the nurses at Children’s San Diego were awesome. They worked their tails off on Monday helping Neil get everything in order and looking up what needed to be drawn, etc. We can’t thank them enough. Neva especially, you are a star!
 
Sammy is still feeling pretty good. We are doing 30 minute Topo infusions and a Cytoxan pill at night. We cut the pill in half this round because his platelets, stomach and body in general got so beat up the last round. I don’t know if it’s the megase, the artemisinan, the lower does chemo, or the combination of everything he’s taking but he looks and feels great. He’s feeling so good this round that he went to soccer practice yesterday after chemo. Lance Armstrong, eat your heart out! I told him he didn’t have to go and that if he did decide to go, he could just watch on the sidelines whenever he needed to. He ran around with the other kids the whole time. He never ceases to amaze me. People may think we’re crazy to let him go to soccer practice right after chemo. He was even accessed. But the joy on his face on the soccer field is a thing to behold, even though he’s not the fastest or the strongest. I remember when we were first starting chemo and I was reading other kids web sites and I’d read things like they sent their son or daughter to school with a low white count and I thought, “Wow, these people are crazy!” Now, thinking back to that, I only wish I’d done more of that. The funny thing was that Sammy bounced back into the hospital whether he was out and about or home sitting on the couch reading books and playing video games and seeing no one. It’s just what his little body did. So, at this point, I’m going to let him do whatever he’s up for. Neil is a great soccer coach. The kids just love him. He’s got so much energy and he tackles coaching with the same intensity he tackles everything. I have to remind him sometimes that the kids need a water break every now and then. Their team got crushed in the first game of the season on Sunday. It was really ugly – something like 13 to zero. We knew we were in trouble the minute we walked on the field because these were big kids who looked like they’d been playing together for years. The kids had fun anyway though.
 
Andy’s team won I think but they don’t keep score. Andy has a great time running around on the field with a big smile on his face but during every practice and game the coach is always yelling, “Andrew! Where’s the ball?” He could really care less where the ball is. He is a good little dribbler though and even got a score yesterday at practice. Their practices are very funny. Bella, one of the girls on the team comes to practice in a tutu and soccer cleats (I’m serious) and she practices ballet the whole time. The coach is a very patient man. Andy is really loving school these days and wants to go – which is great. I signed him up for the five week summer school at his preschool and think I might try a little beginning theatre class for him this summer.
 
Sam got an award yesterday at school and Neil and I went to the awards ceremony. He received a personal achievement award for great progress in reading and math. He was so proud and so cute on the stage with his award. He’s been recommended for summer school this year to help him catch up. I’m debating whether to do that or try a tutor. Summer school is free so we may give it a shot and see how it goes.
 
Charlie is crawling and pulling himself up to a standing position now. He’s still all smiles and loves to blab and blab and blab and blab. I was thinking last night as I was trying to put him to sleep that he’s so excited about all the new things he can do, he doesn’t want to go to sleep at night. He just keeps trying to stand up and blab to me. Ma ma ma, oouuww, mmmmm, etc. etc.
 
Neil is in Vermont today for the conference there. The conference is tomorrow and Neil is speaking. He’ll talk about the parent team they’ve put together, how they came together, what their plans and goals are, and how to get there. The Mikulaks are there as is Meryl Whitmer, maybe John London and many many other parents and doctors. Dr. Sholler has got some phenomenal research going on and we are very excited. I really think this conference and the parents’ and Dr. Sholler’s work in general is going to make a huge impact on Neuroblastoma treatment. I’m biased of course. ;-).
More pics soon.
 
Margot

Topics: Progress Reports | Comments Off on March 15, 2007

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