We start a drug protocol now of predizone cyclosporine and ATG. A line will be put in Riley's arm that runs up his arm into his heart. That way he will not have to be poked with needles, especially with his bleeding and discomfort with the needle insertions. No baths for a very long time. No hot tubs or swimming either.
We should know in about three months if this process is going to work or if we must look to none related donors. The problem is since we didn't get the luxury of a sibling match, all other matches will be imperfect. The protocol we can start immediately. Waiting for a search costs money and time. We were told for sibling matches it is a fairly quick process, as they know in the lab within a few protiens whether the sibling is going to match or not. If they test a none specific donor there are many more criteria that have to be checked and cross checked. Its time consuming and expensive. So the order is sibling,then drugs, then donor search. Even cousins are unlikely to match well.
Riley is getting into calling down to the hopital kitchen and ordering his meals. He ordered beef tenderloin for dinner tonight. He had French toast with bacon for breakfast, mmmmmm. I have been having bags of powder with water added,hmm.
Side effects are potentially rash, fever, nausea, vomiting. He may also eat up platelets for the duration of the first course, meaning more transfusions. His bones will ache painfully in about 3 weeks, which is why the addition of the steriods to help overcome that pain. The idea is to reboot his system so the cyclosporine is an immune suppressant to help get the system up and running, to stop the body from fighting itself. He will be on it for potentially six months to a year or more. ATG he gets in the hospital for eight days. Then he is tested and observed for a while and then maybe treated again. Then the other drugs have to be wheened off slowly.
The cause was idiopathic, meaning unknown cause. He has no reason for his condition. It just is.
They found nothing conclusive. So, we move on to hoping the meds make him better.
Visitors are welcome if they are in good health. Riley will be at Dornbeckers until March this time.
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ReplyDeleteReally sorry Trevor is not a match. Hope he doesn't feel too bad about it. I was reading about another boy who had the "reboot" treatment, and he did great after just one treatment. Riley has survived two unusual and dangerous situations before (placental abruption, whooping cough), so I'm betting he's third time lucky. Sending you a BIIIG hug.
ReplyDeleteIf there is any way cousins are can be a match, Jake and Todd will be in Portland next week and I will pay for the testing....It may be a long shot but i believe in miracles...
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