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November 3, 2006
By Margot | November 3, 2006
Sammy needed platelets yesterday so we were in the hospital until about 1:30 and missed another day of school. Argh. I read SuperFudge to him before he fell asleep from the Benadryll pre-med and we laughed out loud together. I forgot how funny Judy Blume books are. Sam is now completely tanked up with new platelets, good hemoglobins and an ANC of 1000. Wohoo! We’re ready to party. Thank you all platelet and blood donors. Sammy’s had two blood and two platelet transfusions this time around.
Sam and Charlie and I picked up Andrew from preschool yesterday and it was a glorious night. We stopped at a little grassy dog park right on the ocean on the way home and watched the sunset, pet some really nice dogs and did air spins until we were all very dizzy. Life seems so much brighter out of the hospital and there’s really no view in the whole world I like better than my little boys silhouetted against the big giant ocean. Sammy met a golden retriever named Sunny and he got her to shake his hand and fed her a treat. Sam did a mountain of homework last night and since his Wolverine backpack has a broken zipper, I popped it into an old Spiderman backpack and went upstairs to grab pajamas for the boys. When I came downstairs, Sam was frantically looking through the closet. I said, “What are you looking for?” “I don’t want to take the Spiderman backpack, I need my old Transformer backpack or the broken Wolverine one.” I innocently asked, “Why, isn’t Spiderman cool anymore?” Sammy looked at me sadly as if there were no hope for me, “No, Mom. Spiderman is not cool.” Somewhere between kindergarten and 1st grade, I guess Spidey lost his cool. Sammy has always been on the cutting edge of cool. It reminded me of when he came home from preschool one day and said, “Don’t ever put a sippy cup in my lunch box again. I’m much too old for sippy cups.”
Andy and I “helped” the tree cutters this morning. They were trying to clean up a huge pile of branches from the pine trees they cut down out front yesterday and guess who was right in the middle of the pile covered in sap, holding up a branch and yelling, “I’m Leonardo with the stick!”? Andy has developed a fake evil Woody Woodpecker laugh that he gives me every time he’s doing something to Charlie that he shouldn’t be. I’ll say, “Andy, please don’t put your foot in Charlie’s face.” and he gives me a little “He he he, Heh!” Charlie is very patient about it all seems to be waiting around for anyone and everyone to catch his eye so he can smile at them.
We are going up to Big Bear tomorrow after Sam’s soccer game. Jim Lunney, who Neil works with, is lending us his timeshare there. Thank you, Jim! We’re very excited to take a little mini-vacation and it’s good timing for Sam because he’s feeling really good. We were ready to skip soccer this week because Neil and I were afraid he’d be to weak still but he really wants to go to his game. I talked to him about chemo making him a little slower than he used to be but it didn’t seem to matter to him, he just likes being out there.
MIBG scan is next week and it’s a big one – going to determine a lot. VMA and HVA are bascially stable. They each went up about a point. It was a bit of a kick in the stomach because we were hoping they’d keep going down but Dr. Scholler said it’s such a small change that it’s not even statistically significant and since it’s only been ten days there wasn’t much to expect.
We love Dr. Scholler. She is positive and hopeful and aggressive. She got approval from the FDA to start a phase 1 clinical trial for Nifurtimox which is a huge deal and due in large part to the efforts of John and Neil and her. We really believe it’s going to help a lot of kids.
Margot
Topics: Progress Reports | Comments Off on November 3, 2006
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