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.
