Another NIH visit on the books.  Here’s the recap:

We checked in to the Children’s Inn at NIH on Sunday afternoon and had quite an evening there.  At dinner we enjoyed the music of the Augmented Eight (former singing group of our friend Ed!)  Later Jane was allowed to "Shop with a Cop"--members of a local police department brought the children through a "store" where they could pick presents for family members and wrap them.  Jane was so proud!  We got to bed early in preparation for a big day of testing.

Jane with the gifts for her family

We started Monday off at Photography.  Jane has pictures taken every 6 months to document any changes in the appearance of her tumor.  I get to snap along with the photo shoot on my phone.

Next was Eye Clinic.  This visit, aside from the MRI, is the longest appointment of the day.  The wait is long, and the check-up itself involves a visual acuity test, a retinal scan, a dilated fundus and a slit lamp exam.  We easily spend two hours there.  Luckily, just as we arrived one of the office staff was starting to decorate the Christmas tree in the waiting room.  Jane gamely asked if she could help, and thus she was happily entertained during our wait.  Upshot of this check-up:  Jane’s eyes are normal.

Making the Ophthalmology Department a brighter place

Next was EKG and then Jane’s cardiac echo.  Both normal!

Waiting for the ultrasound tech

We were thrilled to discover that we arrived at NIH just as its annual Gingerbread House Competition started!  Last year we were so impressed by the creativity of the various NIH departments in the construction of their houses.  We were not disappointed this year, either!  We perused the displays in between appointments.  Some of our favorites:

This was my favorite.  Little gingerbread people running a marathon!

Jane's favorite.  When you pressed the M&M on the control panel, Mario jumped and music played.

Gingerbread Hogwarts

Finally the MRI.  The wonderful news:  JANE STAYED STILL FOR THE WHOLE STUDY!  A half an hour and no need for sedation.  Hooray!  The days of general anesthesia for her MRIs are over.  I think you could probably hear me cheering all the way from Bethesda!  I guess the 18^th MRI’s the charm :)  We are all so proud of Jane, and she was proud of herself, too.  We won’t have the results of the MRI for a few days yet, but we couldn’t be happier to have this test behind us, and to have the prospect of a sedation-free future.

With no need for a sedated scan on Tuesday, and with blood work done the night before (all normal), Jane and I found ourselves with a free day!  As we rarely get a chance to sightsee in DC, despite our many trips here, we tried to make the most of it.  We slept in and had a leisurely breakfast, then hit the town.  We took the Metro from the Medical Center all the way to L’Enfant Plaza (an adventure for Jane in itself) then spent the morning at the Air and Space Museum.

Flying a plane

Having fun on the Mall

We wandered around the Mall for a bit taking in the sights, but didn’t visit any other landmarks as we wanted to get back in time for a field trip with the Children’s Inn.  The Inn took us by bus to the National Harbor, where we visited an enormous ice display.  The exhibit boasted two million pounds of hand-carved ice sculptures, including five ice slides.  It was a unique, albeit chilly, experience.

As usual, during our visit we met many wonderful and inspiring children and families from distant places with various medical conditions, but we were especially pleased to get to know another NF family during this stay.  T is a little boy from Utah with NF1 who is Jane’s age and who has Jane’s same tumor in a very similar location to hers.  This was his first visit to NIH, and he and his family are hoping to enroll in the same clinical trial as Jane’s.  He had never met another child with NF—I was happy that Jane could be the first!  Jane sat next to him at dinner, shared a seat home with him on the bus, and they became fast friends.  T’s parents and I overheard them explaining to a fellow passenger that they had the same tumor--they pointed to his on his neck and hers on her cheek--but that they were both going to be taking the same medicine to shrink them.  A heartbreaking level of understanding.

Jane and T

Playing "Rock, Paper, Scissors" on the bus

I will update again once we get results from Jane’s MRI later this week.  Meanwhile, we are relieved to be headed home and glad that our next visit is not until March.

~~~

HUGE ADDENDUM!

When we landed in Hartford I had the following message waiting for me from NIH:

“We don't have the official report just yet, but I'm sure Dr. D will have it soon.  Her tumor is down by 33%!!  Baseline 290mL and current: 193mL. Great news!”

DID YOU READ THAT?  JANE’S TUMOR IS DOWN A TOTAL OF 33% SINCE SHE STARTED AZD6244!! 

What fantastic news!  And what a great way to enter the holiday season!  We couldn’t ask for a better Christmas present <3 <3 <3