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October 20, 2006
By Margot | October 20, 2006
Happy Friday! And a happy day it is. I know I promised to start with a Charlie update but first I have to share two very beautiful numbers:
VMA: 9.9
HVA: 14
Yahoo! For those of you who have no idea what those numbers mean. They are urine makers and the normal VMA number is 8.5. We’ve been up near 20 for the last couple of months. It’s now almost normal!!! I almost cried I was so happy when I got the numbers. We are definitely going in the right direction. Go Nifurtimox!
Charlie is still a mellow little guy. Or should I say big guy? He’s already fitting into three to six months clothes and some just plain six month outfits. I saw the Tolleson’s beautiful little one day-old baby yesterday and he looked about a third of the size of Charlie. He’s smiley and happy to see me when I get home. I’m not sure when the whole concept of time kicks in but so far he’s not bearing any grudges. I’m sure it helps that Grandma Joan has been at his every beck and call. We really don’t want to let her get on the plane tomorrow.
Sam finished radiation this morning. The radiation team gave him a big present to unwrap with a card saying what a great job he did and that they’ll miss seeing him wheel in on his heelies every day. It was a big Star Wars ship that we’ve been playing with. Today is also the last day of chemo this week, and it’s been a long week. Sammy worked a little in the school room this morning and finished his homework then Maureen came in and played games with us all morning. Sam won most of them of course. We played Old Maid, Crazy Eights, Go Fish, Blokus and Monopoly. Andrew and Elizabeth came up for a few hours and played too. They just left. Andrew announced loudly that he was ready to go. Chemo weeks are tough on him and he’s been pretty ticked off the last couple of nights when we get home. It takes him a while to warm up and then he’s ok but it will be good for him for us to home for a while. He’s got a great witch song he learned in school. If you see him ask him to sing it for you, he does a little dance with it.
The Child Life Specialist went to Sammy’s school today to talk about cancer. I just talked to Colleen for the report and it sounds like it was a pretty funny scene with a lot of funny questions from the kids and a lot of stories relating it to experiences they’ve had like, “I had once had to get a stitch, ” and “before I started kindergarten I had to get a shot.” I’m sorry I missed it. Sammy is very ready to go home. He keeps asking me every five minutes, “How much longer?” “Can we go home yet?” It’s the hospital version of , “Are we there yet?” ?” We’ve been keeping the nausea mostly under control with Ativan and Zofran alternatively and Sammy’s been getting very happy on Ativan the last couple of days. We do a get out of here dance every day when we get unhooked. We have one more hour to go and then it’s home to a whole weekend of no hospital.
MIBG is scheduled for November 9th.
Hope everyone has a nice weekend. We surely will.
Margot
Topics: Progress Reports | Comments Off on October 20, 2006
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