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.
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| 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!
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| 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:
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| This was my favorite. Little gingerbread people running a marathon! |
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| Jane's favorite. When you pressed the M&M on the control panel, Mario jumped and music played. |
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| 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
18th 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 |
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| 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
