Two visits today. One good. One not.
The dreaded mouth sores showed today with a vengence. Just appeared. This makes anything next to impossible to swallow. The steriods have him craving fries from Checkers across the street from hospital. Nice, salty, seasoned fries - and a mouthful of those awful sores.
Not a good mixture. But he managed to choke down about 3 orders of them before just getting completely fed up and lying down for an afternoon nap. Not much walking or moving after all that. He's worried and upset about hundreds of things. I'd give an arm to be able to know everything running through his mind. Scott is a thinker, always has been. Always thought through things and then catch you off guard with one of his well-thought questions.
He's not oblivious to what is going on inside him. Not oblivious to the medicines involved. Not oblivious to what his body can't do right now that it could a mere 70 days ago.
A comment to me this afternoon pretty much summed up how this makes innocent kids think. I asked him what was bothering him. He answered:
"I'm worried about my bloodwork, the methotrexate level".
A 10-year-old little kid. Worrying about bloodwork. It is maddening.
The other visit was a bit better. A group of military vets from the Military Vets Motorcycle Club - Tampa Chapter showed up about 11:30 this morning.
About 100 of them.
This was before Derry and I had made it this morning. Stephanie said the doctors allowed the kids out for about an hour in front of the hospital. There were very biker-like vets everywhere she said. Very loud group. Very giving group. Very emotional group. Scott literally had a pile of stuffed bunnies, apes, matchbox cars - just loads of stuff that literally filled the extra bed on his room when they got it back upstairs. He got one big ape thing that one of the guys was just walking around looking for a bit. Then he just went to Scott and said "I wanna give this to you".
Every kid had as much stuff. These folks showed up with a truck hauling a trailer just stuffed with things. Each person was walking around giving each kid they saw something. And not just giving them things. Talking with them. Crying with them. Stephanie got a few pictures, said she would have like to got more, but was a blubbering mess most of the time. As were most of the biker folks.
I wasn't fortunate enough to be there by then, but the thing that impresses me the most is just the gift of time these people gave for perfect strangers. Stephanie said most of them said they'd love to just spend all day there, but the hospital only allowed them 60-90 minutes, to keep all the kids on the medication schedules.
Such things are bright spots in today's very jaded world. Scott, and the rest of us, certainly need all the bright spots possible these days.
Scott & Sunny
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2 comments:
I do not know what to say . No child should have to go throw such pain.
David I know you are short on time but so glad you are keeping us updated.
Just wish there was something we could do . Hope Scott can go home sooner than last time
PLEASE LET US KNOW IF WE CAN DO ANYTHING.
We Love You all
And Praying for Scott
Grandmama Papa
yes, it worries me what both Scott and Derry are thinking about the things Scotts going through - and how do they articulate their concerns? It's a minefield you've all walked into and the pschological trauma concerns me almost as much as the physical. Your all always in our thoughts and I know people all over the world who are praying for you as a family and Scott in particular - take strength from that.
Love and hugs
Nana
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