Monday, November 07, 2005

Amazing news...but

This morning we had amazing news. Little T's platelet suddenly bounced back to normal (211) We're totally stunned. His tumor has never responded so quickly. We were expecting weeks of treatment.

This is our third round with it. The prior two times, it took weeks of steroids and Vincristine (chemo) before his platelet count returned to normal. Change was so slow. This time you can see drastic change. His arm circumference suddenly shrunk from 25cm to 20cm.

A slight worry is that his fibrinogen is now down to 156, which is below normal. It's probably because it's being used to clot off the tumor. At least we all hope so!

We'll give him two more doses of massive amounts of steroids. Then we'll cut back to half doses of massive amounts of steroids. We go back next Tuesday to see how things are going.

Steroids are awful. Not as bad as chemo, but steroid change his personality for the worse. I think of athletes on steroids all the time. No wonder they get into fights all the time and beat their wives. His doc says they're different 'roids. Whatever. They suck.

Yesterday I looked at the four syringes of medicine that C was going to give him and my heart broke just a little. In his early days, we gave him as many as 8 drugs at one time. Gods knows how all these drugs interact and they don't run drugs trials on babies. But my little observations are these. He used to smile at least once an hour. Now he smiles once a day and cries at least once an hour. He wants to be held most of the time if he's awake. He used to like to scoot about on the floor most of the time.

He flies into 'roid rages a lot. Little things just tick him off. Like if I hover over him too much. If I take away a toy. If someone is too noisy. His face contorts into this furious mask like the Incredible Hulk. He starts screaming very loudly. He behaved this way as a baby and I always said he was really a sweet guy. Sometimes the nurses would just look at me like "yeah right." Now I know he is normally a sweet guy.

At least I've removed one source of his rage. Normal platelets means no more hovering over him whenever he scoots about or pulls up. And I can count the doses until we cut back to half doses. Maybe that will take away the 'roid rage. Or at least bring back the scooting.

Anne Lammot's book Bird By Bird is one of several that changed my life. People ask "how do I get through this?" One way is dose by dose, day by day, hour by hour. Sometimes minute by minute.

I will tell you we also learned today that this will probably not be his last relapse. That some kids with his type of tumor are on Vincristine aka chemo for 3-5 years. So in some twisted sense, Little T's "lucky". Or maybe we're just parents and a doctor who won't take that course of treatment. Who knows? There's no standard course of treatment for Kasabach Merritt Syndrome, because it's so rare.

I also learned that the relapse may have been triggered by his getting the stomach flu. Or maybe not. So no more playdates. And we have to treat him as immuno-compromised for the rest of the winter. Though he is in fact immuno-compromised right now, because of the steroids.

But honestly right now that's more than I want to deal with right now. I'm mostly telling you, so you won't be surprised if you read that he had another relapse. And if you live locally, why you won't be seeing Little T anytime soon.

But I guess if they keep resolving as quickly without the complications that have landed him in the hospital five times, then it seems somehow manageable. I dunno. I can't really think about it too much. So I just think about today and how his platelets are 211 and just two more doses.

4 comments:

Plantgirl said...

That's great news. As for the future, well, I'll keep hoping for the best.

R said...

Both my boys are immuno compromised. Both are on therapies to help "jumpstart" their systems. HUGE HUGS. I think it is wonderful that his platelets have responded so well, and so quickly this time. Keep sight of the victories.

Dee said...

Yay T! Keep up the good work lil guy :)

~~E said...

WOOT!!!!! WTG Little T!!!!!!!!