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March 6, 2007

By Margot | March 6, 2006

We were due to start chemo again yesterday but Sam’s platelets are only at 44 so we can’t start until next week. This is a good thing in that it gives him another week of feeling good, eating, and going to school. It’s a little nerve-wracking though because he’s been complaining of leg pain lately. We can’t tell if it’s from running around so much, falling out of a tree (yes he fell out of a tree), or if it’s cancer. We sort of have to assume it’s cancer but it’s hard to tell. Sometimes he says it’s both legs in the same spot, which would not be cancer and sometimes he says it’s his right leg -also odd because he relapsed in his left leg. Also, he is otherwise feeling and looking so good and, it’s very intermittent. Anyway, that’s our worry for the week. Neil and I had a phone consult with another nutritionist yesterday. This guys focuses on cancer and was very impressive. Neil found him of course. Sometimes we consult with nutritionists and the like and they say things like, “Now what kind of cancer is neuroblastoma? Brain Cancer?” The doctor yesterday knew his stuff -knew the mechanisms of neuroblastoma and how it works. He wants to test Sam’s blood to see if we can’t find some things to complement the treatments we’re doing and make sure the supplements we’re giving him now are helping. I was impressed with him. We’ll see what he comes up with.
 
Charlie has decided he does not want to be put down so when you go to sit him down on the floor he straightens out his little body so that’s it’s impossible to sit him on the floor. It’s really funny. He keeps wanting to eat what Sam and Andy are eating and not his baby food. I can tell he’s going to have a mind of his own like his brothers. Andy had pajama day at preschool yesterday and came home talking all about the obstacle course he ran through. Neil went to a dinner last night to talk with Eric about fundraising for The 24 hour Corporate Challenge Race. I took the kids on a flashlight walk by the bay. We got out there and Sam said, “Wow, what a beautiful night.” It’s such a nice thing to hear from your six year old. Sam’s been noticing the sunsets and the moon rising a lot lately -it reminds me to stop and take the time to notice and enjoy it. He and Andy looked for clues along the way. Andy loves to play Scooby and, “Ok gang, it’s time to split up and look for clues.” Andy was wearing his new Home Depot hat with the light on the top and was getting a lot of comments from people walking by. It was a beautiful night and Charlie happily took it all in in the Baby bjorn. He’s almost getting too heavy for it. By the end of the walk, Sam wanted me to carry him so I had him on my shoulders and Charlie in front and Andy leading the way with his headlight. It was quite a sight.
 
We do another blood check on Thursday. They don’t expect Sam’s platelets to be up enough for chemo by then but we can gauge where we are. It’s working out for the vaccine trial because we were able to do the blood draw for that yesterday and we’re supposed to wait another seven days and then do another one. Since we couldn’t have been on chemo for that, we would have had to wait 21 days for the second blood draw and I don’t think that would have worked. So, please think good thoughts for Sam’s blood growing a vaccine at Texas Children’s.
 
Margot

Charlie 6 mos.

Andrew and Andrew at birthday party.

Sam in the shark.

Andy’s Pirate Party at the aquarium.

Topics: Progress Reports | Comments Off on March 6, 2007

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