Monday, October 6, 2008

Report from the 26th

I haven't had a chance to update from our last visit, so thank you for being patient!

We stopped at the library on the way and checked out some books on CD. We have a rule that the kids can't watch movies based on books if they haven't read the books. Chet and Faith want to see Twilight when it comes out, and have been trying to get the book read. I don't care if they listen to the book on CD instead, so Chet checked out the whole series, and we listened to it during the roadtrip. Chet enjoyed it so much that I think it will become a regular tradition for our St. Jude roadtrips.

We checked in on Friday morning, and went through the regular routine of blood draws, measurements, and making sure his head wasn't too big.
It wasn't, but Chet has grown two inches over the last couple of months. He has also been looking and feeling fantastic. We didn't have anything major to report, andsince he has been doing so well I wasn't surprised to hear that they don't want to plan a transplant yet.

Chet was expecting them too, though, and I should have clarified with him better that as long as he stays pretty stable they will continue to postpone it as long as feasible. When he heard this he went from his chipper happy self to tears. He wants so badly to be cured. He wants to play sports, he wants to feel normal all the time, and he wants it now. We all felt so bad for him, and he wasn't even willing to joke around to lighten the mood a bit. I felt so terrible for him.

THe nurses and doctors made him a big card and brought him some balloons and a t-shirt, and wanted to sing "Happy Birthday" to him. (His birthday was the 22nd.) He was still teary, though, and didn't want anything to do with it. About an hour later he had calmed down and was happy again. I didn't take pictures of the little impromptu party since he was still crying, and so he offered to ask them to recreate the scene in January when we go back. We both laughed over that.

Then he put on the shirt and asked me to take his picture in it. I thought that was sweet of him.

Beth's birthday was the 26th while we were there, so she laid claim to his balloons.

We spent some time in the Memorial Garden where Danny Thomas and his wife are interred. It was quiet, and calm, and peaceful.
On the way home we stopped at a spot that shows the beginning of the valleys in the Ozarks. We live about an hour into this picture. It wasn't a good time of day for lighting for photos, but the scenery is breathtakingly beautiful, and every time we drive home from the hospital I thank God again for bringing us to these gorgeous mountains.
The goal is to keep Chet as healthy as possible for as long as possible. I understand it frustrates him to be too sick to play sports or have the energy for so many things he wants to do, but not sick enough to be cured yet, but I am grateful that he has doctors we can trust, and he has the chance of a cure when so many don't, and that although he is living with this terrible disease he isn't usually in pain. We go back in January for another marrow aspiration and checkup, and we will continue with monthly counts here at home.

I can't bring myself to pray that he gets cured very soon, because that would mean he would have to get very very sick first. I can't bring myself to pray that he continues to stay sick the way he is, because that doesn't feel right either. So I am going to pray for patience, and turn this over to God who already knows what will happen next.