NIH visit 3/28/18 - 3/30/18
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| We don't have any trouble identifying our luggage these days |
Jane and I arrived at NIH late Wednesday afternoon,
just in time for the Family Dinner at the Children’s Inn. We were looking forward to seeing another NF
family who we knew were visiting NIH at the same time. Travis and his mom, Kelly, come to NIH all
the way from Utah. I knew Kelly from
working with the Children’s Tumor Foundation, and we had met her and Travis in
person on a previous trip to NIH (http://nfemom.blogspot.com/2016/10/). Like
Jane, Travis has a large, troublesome, plexiform neurofibroma (PN), but where
Jane's PN involves her head and neck, Travis' occupies the whole length of his
leg. He is the same age as Jane,
and in the same clinical trial!
After dinner, we attended a painting activity,
then headed to the game room for a few rounds of air hockey. We documented the rematch between Travis and Jane
and compared the pictures to ones from a year and a half ago.
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| Dinner buddies |
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| Goofing around |
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| Painting fun |
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| Adding her finishing touches |
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| Some of the Inn residents' creations |
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| Jane and Travis at the air hockey table during this visit... |
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| ...and back during their first meeting in October 2016! |
Jane had a blast—I had to pull her away to come
to bed. We were starting at the hospital at 8am the next morning, so wanted
to get a good sleep.
Our busy itinerary for Thursday:
8:00am—Vital signs (3 hts, 3 wts) and Labs, Pediatric Clinic, 1st floor
8:30am—Meet with Trish, Pediatric Clinic
9:00am—EKG, Radiology, 1st floor (or anytime during free time)
9:30am—Photography, Room 1N230, 1st floor
10:00am—Echo, 5NE, 5th floor
11:00am—Physical exam with Andrea, Pediatric Clinic, 1st floor
* will need Ativan prior *
12:00pm—Unsedated MRI (Face, sinus, ENT), Radiology 1st floor
Lunch Break
12:45pm—ENT exam, Outpatient Clinic, 3rd floor
2:00pm—Family meeting, Pediatric Clinic
2:30pm—Eye exam, Outpatient Clinic, 10th Floor
We were appointment champions—keeping on
time with that crazy schedule and barely stopping for a breath. We even managed to get our security badges
renewed before our Photography appointment!
We learned that Jane is almost 5’4” now! Despite her height, she is still a
10-year-old at heart.
Her faithful stuffed animal, Puppy, accompanied
us the whole day, and Jane and I played Go Fish in the waiting room between
doctors’ visits.
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| Waiting for an EKG |
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| At Photography |
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| Needing a hug! |
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| Echocardiogram |
While Jane was having her echocardiogram, I
commented that we could see her “heartstrings”—the chordae tendineae, thin
tendons that attach to one’s heart valves.
We noted that dragon heartstrings can be used for wand cores (in the
Harry Potter universe!) The ultrasound
technician said his children loved Harry Potter, too, and proceeded to give us
a complete anatomy lesson on the chordae tendineae, the heart valves, and the
papillary muscles that control them :)
Jane did brilliantly during her MRI, staying
perfectly still for the whole scan. I think she may have even had a
little snooze during it. (She is given 0.5 mg of Ativan right before it, so
that helps). Unfortunately, we won’t have MRI results until sometime next
week.
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| One of the dozen or so eye tests Jane endures. Ugh! |
During Jane’s eye exam the Ophthalmologist mentioned
that he knew an Ambassador Jane Constable, one of the first and the few female ambassadors
from the United States. I had never
heard of her, so we quickly Googled “Ambassador Jane Constable”. Would you believe the first hit was our Jane’s speech at the NF Gala from
November? (Link here.) We showed it to the
doctor, and he was duly impressed. (It turns
out the real ambassador was Elinor Constable, who was the Ambassador to Kenya
in the 1980s.)
After eight full hours at the clinical center,
we had an afternoon of well-earned fun time at the Inn. Jane and Travis and a couple new friends spent
most of it out-of-doors, enjoying the finally-spring-like temperatures. One newcomer was a 13-year-old girl from England
who was at NIH for treatment of leukemia.
A second was another 10-year-old boy with NF who also has a plexiform neurofibroma and who also is just starting the same trial and Jane and Travis! While the kids played, we mothers compared
notes and took pleasure in the company of other moms who know what it’s like to
live with NF.
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| Jane on the playground! Shoes off, hangin' with the other kids, wearing sunglasses (because she just had her eyes dilated), just being a kid <3 |
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| Passing the time by playing Go Fish with Travis with tiny cards while waiting for an appointment |
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| Back at the Children's Inn |
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| Petting Zilly, the therapy dog who lives at the Children's Inn |
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| Racing Travis in his motorized wheelchair. Three out of these four children are 10 year olds with NF on the selumetinib trial! What good company! |
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| Air hockey champion! |
All of Jane’s screening came back normal,
though as I mentioned, we don’t yet have her MRI results. I will update you all as soon as we learn
them. Meanwhile, Jane has restarted the
selumetinib at her usual dose. It may be
that her care team will recommend a higher dose going forward since Jane has
grown so much, but we will wait until we know the current size of her tumor
before making that decision. For now, we’re
done with testing until our next NIH visit in September.
