NIH August 2021

 

Update: NIH August 2021

This week Jane and I flew down to Bethesda for a quick check-up—her first visit to NIH since her surgery this spring, and our first time back on an airplane since the pandemic started!  We had been apprehensive as to how we would find the airport, but it seemed remarkably unchanged since pre-COVID times (for better or for worse) except that everyone was wearing masks.

Our schedule at the NIH Clinical Center wasn’t as jam-packed as it has on some occasions.  One reason is that Jane no longer has to have eye exams every 6 months—she’s graduated to once a year because, thankfully, selumetinib hasn’t had the negative ocular side effects that had been a potential concern when the trial started.  Our team also wanted to wait until next year to repeat Jane’s full-body MRI, so she got away with just her usual facial/ear-nose-throat MRI.

Sadly, we had no Fauci Sightings during this visit, but our nurse practitioner had a surprise for me—a pair of Dr Fauci socks!  I had given her a Dr Fauci face mask back in the spring at the time of Jane’s surgery.  She said she saw the socks at a local shop and just had to get them for me :)  I’ll wear them with pride!

Jane went through all the appointments like a champ, as usual, including extra, unexpected blood work the second morning to double check a result.  Despite this being a quick and (relatively) easy trip, I can’t pretend it doesn’t wear on us.  Jane is getting to an age where she is beginning to understand the implications of a life-long, complicated medical condition.  And despite the successes with selumetinib, Jane is facing at least another 5 years on this medication—a medication that causes side effects significant enough to require other medications to counter-act them, and even then the side effects are persistent and not trivial.

I will end on a positive note, however.  We received the results of Jane’s MRI before we left NIH.  Her plexiform neurofibroma looks stable!  We’ll carry on with her current regimen until our next visit to NIH in January 2022.