December 2022 NIH visit

December 2022 NIH Update:

We visit the NIH for check-ups every 24 weeks (every sixth 4-week cycle).  Because the interval is a little less than 6 months, visits happen a month earlier from one year to the next.  Add to that some changes in our visit schedule due to surgeries and breaks from the study medication due to side effects, we haven’t ended up at NIH around the holidays since 2015.  Things were a lot different then!  Jane was a lot shorter, I was a lot less gray, and even though the NIH campus has always been strict about infection control and security, there were a lot fewer restrictions on getting out and about at NIH in 2015.

Jane helping to decorate the tree in the Ophthalmology Department in 2015

Same tree, same skirt, same department, 2022!

One event we were particularly looking forward to was the annual NIH Gingerbread House competition, in which different departments at the clinical center go to town building elaborate gingerbread houses, castles, robots, games, and holiday scenes.  All are put on display in the main atrium to be enjoyed, and ultimately judged, by the public.  Jane and I were disappointed to learn that the competition has not been held since the pandemic started.

COVID has particularly impacted the experience at the Children’s Inn, where they have to be very careful to protect some really sick kids who are especially vulnerable to the virus.  Despite requiring each resident to have two negative COVID tests (one within 72 hours before our trip and another once we arrive at the Inn) there still are no groups meals or big group activities like the Inn has had in the past. (Though there were astronauts—see below.)  I miss getting to meet the other Inn families from around the world and talking with them about their rare and complex medical conditions.  It made us feel not so alone.

Our schedule

Our first day at the Clinical Center started at 7am with a 90 minute full body MRI and dedicated face MRI.  We both fell asleep at points—Jane in the MRI scanner and me in a non-metallic chair at her side.  I guess we were tired!  The day also included blood work, EKG, physical exams, an eye exam, and a meeting with our team.  We headed back to our room after 7-1/2 hours at the Clinical Center.  When we got to the Inn, we discovered some astronauts from the International Space Station (Expedition 66) were giving a presentation!  Jane wasn’t up for joining it—her last appointment of the day had been with ophthalmology, so her eyes were dilated and she couldn’t see anything—but they did save some swag for her :)

Autographed photos!

A model spacecraft to build!

My favorite :)

The second day at the Clinical Center also started at 7am with an MRI, this time a brain MRI which required IV contrast.  (No sleeping this time--I had just downed a large coffee!)  After the hour-long scan, we went directly to her echocardiogram and managed to be out of the Clinical Center by 10am.  We had a seamless trip to the airport, and after quick flight we arrived home before dinner.

Todd and Henri had been home alone during our trip.  That hasn’t ever happened before!  The last time Jane and I were at NIH, Alec hadn’t yet left for college.  Henri did not understand :(  Todd sent us several pictures of Henri watching the front door, waiting for us to come home.

Wednesday night vigil

Thursday morning vigil

We got a quick report from our team before we left NIH on Friday.  So far we know that Jane’s blood work is mostly normal, and her eyes and heart are normal.  We don’t have a formal reading on the MRIs yet, but a quick glance at the scans by our team seems to show:

1- No major change in her facial plexiform neurofibroma.

2- No recurrence of the abdominal tumor that was removed last March.

3- No sign of the new psoas muscle tumor that had first been spotted in June of this year! Yay!

4- A new bony abnormality in the right humerus in her shoulder.  This particular finding is apparently not unusual in NF and probably has no consequences.

Hopefully we’ll have final results before the holiday and know the plan for the next six months.  I’ll update when we do.