Time for Plan C

Marty goes to the rheumatologist on Tuesday.  Tuesday, as in after both kids are scheduled to go to a major league baseball game with their dad on Monday.  The doctor doesn’t want Marty to have any more Enbrel, but if he misses the Saturday dose, then by Monday he won’t be able to walk around the ballpark.  He absolutely hates the wheelchair, and I can’t imagine my X negotiating a ballpark with it anyway.  The X already has the tickets, and they are regular seats, complete with stairs.

We are in negotiations with the doctor’s office about Saturday’s dose.  Marty and I want to do it, but the rheumatologist is thinking we go back to Kineret on Tuesday.  I don’t want to go back to Kineret at all.  It wasn’t taking care of the inflammation, why start it again then have to go through another wash out period?  If we’re going to go to a third biologic, why mess with Kineret?  And if we decide on a third one, we won’t have it in hand to give him on Tuesday anyway (unless it’s an infusion, in which case I still don’t know if it would be available.)

I want to get this figured out.  Now.  I want him feeling better before school starts, which is also Marty’s main concern.  I don’t want him constantly inflamed, which inhibits his growth.  He is already the shortest kid in his school, and I would like him to at least approach 5 feet before he starts high school in a year.

What I really want is my healthy boy back, but I’m afraid to ask for that.


About juvenilearthritis

A single mom raising a son with juvenile arthritis and a daughter with a big heart.
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