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Little T's tumor is regrowing

Little T's tumor is regrowing at the ends, though it continues to shrink around the middle. It would all be fascinating if it weren't my son. He's back on Amicar and Prednisolone (steroids), which means that he's immuno-compromised again. His tumor consumes platelets again. Kasabach Merritt Syndrome returns again.

Unfortunately his low platelet count (40) means that if he bumps his head, he can have a brain bleed. He's starting to cruise and he's wobbly. Normally he falls on his head every day. Not a hard fall, mind you. Just a slight bonk on the head. Not even enough to cause crying sometimes; certainly not enough to cause a bruise. He only has one functional arm, so he can't brace himself. So no more cruising or pulling up for him until his platelets come back up on their own. And we have to watch him very carefully. His platelets get measured again on Tuesday. It'll be a long few days.

We thought very carefully about getting him a platelet transfusion, but we decided that we don't want to risk platelet rejection, and the IV would be very tough on him. We'd still have to watch him just as carefully since we don't know what his platelets will do between now and Tuesday. And Wednesday was probably his lowest platelet point anyway when he had the bruising and petechiace. Each platelet transfusion increases the risk that he'll reject them. He's had so many platelet transfusions.


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Jan. 13th, 2006 11:58 pm (UTC)
Just sending (((hugs)))
# posted by Amazing Toddler's Mom : 11/04/2005 07:49:46 PM

I am so sorry T!!! You all are in my thoughts and prayers!!! Please give your little man a gental hug from me!!!!!!! xoxoxox

# posted by E : 11/04/2005 07:53:15 PM

Oh, dear. I'm sorry. Sending much love and healing energy.
# posted by dawnd : 11/04/2005 09:22:47 PM

Sorry to hear that, for all of you.

I know that this sounds like a dumb question, but could you use a bike helmet to reduce the risk around the house while his platelet count is low?
# posted by frumiousb : 11/04/2005 11:52:32 PM

I had the same "helmet" thought. The Off Ramp on El Camino is a good place to get one. They'll fit it to his head, so it's not wobbly or horribly uncomfortable, even if you didn't buy the helmet there.
# posted by Jenny : 11/05/2005 06:02:44 AM

oo good idea with the helmet. I have a couple of kids in my class that have custom made helmets because their heads are so tiny. They're like mini football helmets that are flexible. *hugs* I hope things start looking up soon!
# posted by Dee : 11/05/2005 04:52:41 PM

Other people suggested a helmet and those stroller chairs, so I'll just offer big hugs and all my best wishes.
# posted by plantgirl : 11/07/2005 11:56:36 AM

Thanks for the prayers and vibes and thoughts. It helps to know you're out there. A helmet wouldn't really help when his platelet count is low since any type of falling can cause uncontrolled bleeding. It's just falling on his head is the most common fall he has, and the one we have to worry most about. He's too wobbly and he only has one arm so we can't use any type of walker, so we just have to restrict his movements if his platelets drop again. It's more of a way of tangibly doing something. I can't really fix this tumor. Giving him these drugs causes him lots of pain. I can prevent a brain bleed or rushing him to the ER for any other type of uncontrolled bleeding. It's sort of a moot point anyway. He wants to be held a lot right now anyway. The drugs make him feel lousy.
# posted by Thida : 11/07/2005 12:26:22 PM
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