Stephanie and Scott are at the clinic this morning. He's had his bloodwork, and needs no transfusions. His ANC is quite low - 347 - which isn't surprising considering he's only 14 days past the last Hi-dose being administered. Hopefully his body bounces back over the next week, and especially when the next round of steroids begins in one week. This will be the first time he's had the high level of steroids without the hi-dose chemo. It will be interesting to see how things progress, as this will be the routine of treatment for the remainder of his scheduled protocol.
Stephanie also researched and found an ODT (Orally Disintegrating Tablet) for of Scott's steroid. The docs have discussed it, as they hadn't reviewed it to date (it was just FDA approved last year). They've okayed it for use in his treatment to replace the normal tablets and liquid form. The clinic nurses are checking to make sure the insurance covers that form. Hopefully they do, that will handle a big worry we have going into next week.
Dr. Wynn has visited with him this morning, and okayed swimming at home, as long as the pool chemicals are at proper levels. He also okayed a bit of ice skating (which honestly scares the living hell out of me). We'll have to see about that one. Have to try to find some very "non-crowded" ice time for sure. No way will we toss him out there during the normal "public" skates. There are a couple of instructors that do one-on-one for reasonable rates. That may be the best approach. The biggest worry is Scott's all-out skating approach, as he never cared if he fell or crashed into boards before. Hopefully there's a bit of fear about that in him at this point.
Still not been on the Toys-R-Us visit just yet. Probably will do that on a weekend morning. Scott desires a Nintendo Wii. They are still hard to come by down here, but the store manager is searching. Mr. Wallace returned again yesterday to the house, bringing Scott some cards made by schoolmates that do the Morning Show at his school, as well as the Student Council -which Scott had just been named to a week or so prior to his diagnosis.
And if you have a spare birthday card lying around, drop one to this kid named Shane. Two years into his treatment for ALL, Shane relapsed and had to start over at Page 1. Now all he wants is to try and get as many birthdays cards as possible. I think the 350 MILLION is a typo on the page, I think it is supposed to be 350,000. Regardless, any card added to his mailbox will hopefully make a bright spot in his day. He certainly needs it.
Scott & Sunny
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5 comments:
I hope Scott is able to swim soon. You know, the resident expert at parentel paranoia, but I cannot even begin to imagine the fear you and Steph have of letting Scott do these things. You have taken excellent care of Scott and I am sure ya'll will make the right decisions about his activities. I am so very proud to call you my brother and see the wonderful husband and father you have become.
Keep us posted on the insurance issue.
My card will be in the mail tomorrow morning for Shane and I am forwarding the message to many, many people. What a small request for such a sick little boy.
Love
Carolyn
I am like Carolyn we know you all willdo what you think is best for Scott.You have taken very good care of him so far.
Steph is a wonderful mother. And I am so proud of you.I feel we have some great kids that stands up to do what has to be done for the ones they love.
I will get Shane card in the mail
Love to All
Mom [Grandmama]
just caught up on the last 2 weeks blogs after being away - interesting - good and bad bits but have to cling on to the positive. So pleased Scott can do a bit of swimming again - won't it be brilliant when the day comes when you don't have to watch everything he does and he can go back to being a normal lad again. Well done Steph for finding out about that easier drug - will hopefully make a difference to not just Scott but all the other kids in the same boat. Of course will send Shane a card.Love to all
You're my hero, Steph
Love and hugs to you all.
S.
Shane is gonna have a bunch of cards from South Africa.
Talk soon Steph.
Love to all
Lorna xx
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