Saturday, July 1, 2017

Happy JA Awareness Month


 

Juvenile Arthritis Awareness month has officially begun…The years seem to loop back around quickly and I feel a little bit like a broken record; but we desperately need a cure.  We have been a little quiet lately, not knowing what the future holds, trying to make big decisions, and wishing there was really big progress around the corner.  Parker has been in, what feels like, a holding pattern.  Every month, when we refill his cosentyx (now on for nearly 6 months), they ask if symptoms are improving, getting worse, or staying the same…I say staying the same.  They say great.  And then I say but same is not great…it doesn’t seem to have helped him yet.  He is also on Rasuvo (auto inject methotrexate)…but that darn med makes his leg go numb, so we don’t know how much longer he is going to use it.  Docs, nurses, and pharmacists all say that is not one of the side effects…I beg to differ because, at least for Parker, it is. (And by the way, he tried the other auto inject of otrexup and the numbness was even worse).

I am a little more worried these days, wondering what the internal organs are doing.  He has had many issues since my last blog post.  Gastrointestinal issues (possible crohns, but meds might be masking it), Kidney stone that had to be blasted out, many flares with fevers and rashes, the never ending battle of pain, adrenal crisis twice, possible dysautonomia flares, and the need for a re-do on this right foot/ankle/tibia.  He now has surgery scheduled for August 28.  The surgeon will be fusing that foot like his left, with 3 bolts.

Through it all, Parker fights with his driven spirit and is balancing these not-so-fun medical issues with real fun.  He is part of a large campaign that will launch later this month (yes, that’s a little teaser); he was selected to be a “Leader in Training” (LIT) at Camp Boggy Creek for cancer week; and he is gearing up for his first year at the JA Conference as a “young adult”…Yes folks, he is turning 18 on August 5.  I still can’t believe my kids are now both adults.

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