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August 4, 2005
By Neil | August 4, 2005
Friday is the stem-cell infusion. Day 0 in the vernacular of our protocol. Sam has done amazing so far; lots of energy, building puzzles & doing mazes, working on his ninja moves. His immune system is dropping as expected. We cross the threshold tomorrow where he goes into isolation. This is normal and expected. He should stay isolated for at least 3 weeks so that puts him at about 8/26 for coming out of isolation. Our goal is just to make it as fun as possible. If all goes well, no infections of any kinds (bacterial, viral, or fungal). What else is new with the little knucklehead? Well, his drug of choice is an anti-nausea medicine called Ativan. It makes Sam loopy. He’s a great loving kid but if you pump him full of Ativan he becomes a huggy, silly, slap-happy kid that is walking on clouds. After over 80 days in hospitals this year, he’s sick of being prodded so he oftentimes won’t answer questions from doctors & nurses. Most kids get to this point. But shoot him full of Ativan and he’ll talk to anyone and the first time the doctors see it, they laugh since he’s totally different towards them. Also, he has decided he wants to take Karate lessons when he’s done. Our buddy, Gregory Giller, who beat neuroblastoma 4 years ago, takes karate lessons also so it may be a common thing to do. What else? I’m studying anything I can read about fundraising. I’m checking out Tipping Point, MoveON.org which has a phenomenal following that impresses people on both sides of the political spectrum, and the Prostrate Cancer Foundation. If anyone has ideas, please email me! I’ll definitely reply. Andy had a great day – it was his day with Mom. Tomorrow is a day with Dad and Grandmom and we’ll probably go to the LA Arboretum and run around plus do a swim or two. Thanks for all the emails and I’ll try to update this each and every day.
Thanks – Neil
Topics: Progress Reports | Comments Off on August 4, 2005
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