NIH/DC Update:
Jane and I had an
uneventful flight to Bethesda on Sunday. We spent the afternoon resting
at the Children's Inn across from the Clinical Center.
On Monday Jane had a full
day of testing, beginning at 8:30am. The
day started with a blood draw, for which Jane never flinches. Next was Eye Clinic, where the battery
of testing and exams took 2 hours (relatively quick for the black hole
that is the NIH Eye Clinic.) Next came her physical exam with our nurse practitioner. Since our arrival at NIH we'd
had about twenty people tell Jane how tall she's gotten, and now we know
exactly how much: she's grown 2-1/2 inches in the past 6 months :) We followed her physical exam
with an EKG. Then, right before our lunch break, we even managed to get to
the Security Desk to have our hospital badges renewed.
The afternoon began with
an echocardiogram. The room was so dark and quiet that Jane fell asleep
during the hour-long exam! The technologist was so gentle, and Jane so
tired, that she didn't wake up when he shifted positions or changed
angles. I was glad, thinking it might help give her the energy to
make it through the rest of the day and her ever-important MRI.
The last appointment
before her MRI was my favorite, Photography.
By this time, Jane was
starting to flag. I gave her a pep talk telling her she had to hang in
there, that the MRI is the most critical test of our visit... In the end, Jane stayed SO STILL for her
MRI! I think it was the best one she's ever done without sedation.
Back at the Inn after 8
hours of testing at the Clinical Center, we had dinner and an early bedtime in
anticipation of receiving the results of MRI #22 in the morning.
Tuesday morning, we were
back at the Clinical Center again at 8:30 am, this time for pictures with our
care team to be used by NIH for NF Awareness Month in May.
With our research nurse, Trish, Dr Brigitte Widemann, and our nurse practitioner, Andrea |
After the photo shoot, we
got the news we'd been anxious to hear: Jane's tumor appears stable!
It is currently 30.7%
smaller than when she started the trial 3 years ago. We bottomed out at
33% smaller about a year ago, and it's remained within that margin of error
ever since. Of course, we are thrilled!
A few more issues we
discussed Jane's visit:
Medication dose.
Jane is currently taking only 10mg of selumetinib twice a day.
The typical dose of children in the study at this point is more
than twice that. Jane's dose had been reduced early on due to a severe
rash that she developed about a month after starting treatment. At the
time, less than two dozen children had ever taken the medication, so to be
cautious our care team kept her at the lower dose. However, they have
since found that several children developed similar rashes early on in this
treatment, and that the rash usually resolves without reducing the medication
dose. Jane's care team is again considering returning her dose back to
what it would have been had she never had the reduction.
The problem is that
the study protocol requires that the medication be given in two equal doses
daily; and as luck would have it, the only capsules manufactured by the pharmaceutical
company (Astra Zeneca) are 10mg or 25 mg--so there is no option to increase the
dose gradually, say by 5mg at a time. The only way to increase Jane’s
dose would be to jump immediately to 20mg or 25mg twice a day, and such a jump
would invariably cause more side effects.
However, Jane’s doctor,
the wonderful Dr Brigitte Widemann, did hint that it may be possible to alter
the study protocol to remove the restriction of equal doses twice a day, thus
allowing Jane to take, for example, 10mg in the morning and 20mg in the
evening. This would be a more manageable
dose increase. The team will need to
review this possibility and get back to us.
On the one hand, we are
content to see Jane’s tumor is stable, and don’t feel the need to excessively
press our luck with a higher dose of selumetinib, especially when she has been
feeling so well. On the other hand,
since Jane has already been subjected to the risks of selumetinib, we’d like
her to derive the maximum benefit that she can from the medication while it is
available, in case there are ever issues with obtaining the drug in the future
(eg if it doesn’t get FDA approval or if the company decides it’s not worth
their while to continue manufacturing it).
We also discussed with
Jane’s team her facial structure. This subject came up because recent dental
x-rays had highlighted the bony abnormalities of Jane’s face. It turns out her face may never be
symmetrical, even if her tumor completely disappeared today. I’m
embarrassed to say this never occurred to me before, but it makes sense. The tumor occupies a large space in Jane’s
head and neck, and it has disrupted the growth of the bones in her face,
causing a defect in her mandible (jaw bone) and an asymmetry in her mouth. This is unlikely to change even if the tumor went
away.
~ ~ ~
With our NIH appointments
complete, Jane and I turned our attention to another adventure: a visit to Capitol Hill! In my last post, I described how our
Representative from Connecticut, Congressman Joe Courtney, invited Jane and me
to meet with him in his Washington office to share our experience with the
National Institutes of Health and thereby illustrate the importance of its
funding.
Ready to conquer the Capitol |
Jane and I took the Metro
from the Medical Center all the way to Judicial Square and walked from there to
the Rayburn House Office Building next to the Capitol. I can’t tell you how intimidating it was
walking into this building! We were
literally within the Halls of Congress!
Congressman Courtney and his staff could not have been more gracious and
welcoming. The Congressman spent a good
half hour speaking with us, asking questions about Jane and her treatments, and
listening to our story. We had just
heard the good news that Congress had agreed to a $2 billion spending increase to the NIH for the remainder of
this fiscal year, and Congressman Courtney vowed to fight for continued
financial support in the budget for NIH in the upcoming year.
We gave the Congressman a
“I kNow a Fighter” shirt, a copy of the New England Journal of Medicine that
featured selumetinib, and a copy of the “MEK Makes a Difference” flyer from the
Children’s Tumor Foundation that features Jane (more on this in my next post).
Outside the Congressman's office |
With Representative Joe Courtney! |
Congressman Courtney also
presented Jane with his Challenge Coin from the House of Representatives in
honor of her visit!
A copy of the Affordable Care Act from 2010 hangs on the Congressman's wall <3 |
After our meeting, one of
the Congressman’s staff members offered to take us on a personal tour of the
Capitol Building! Our guide, Brendan,
gave us an entertaining, informed, and often Hamilton-themed (Jane, being a fan
of the musical, looked for Alexander Hamilton in every statue and painting we
saw) inside view of the Capitol. He took
us through the House office buildings, into the underground tunnel that connects
them to the Capitol Building itself, and into the Visitor’s Center. We saw Emancipation Hall, the Crypt beneath
the Rotunda, the Old Supreme Court Chamber, the Old Senate Chamber, the
National Statuary Hall, and the Rotunda itself.
The Statue of Freedom, a replica of the one that sits atop the Capitol Building |
A statue of Helen Keller in Emancipation Hall |
We
spent the most time in the Rotunda, with The
Apotheosis of Washington fresco in the oculus of the dome, and with its
huge scenes from the American Revolution, painted
by John Trumbull.
Declaration of Independence |
Jane and Brendan admire the Surrender of General Burgoyne |
Alexander Hamilton! |
General George Washington Resigning his Commission |
Surrender of Lord Cornwallis behind the Portrait Monument, a statue of three pioneering suffragists |
While we were in the Rotunda, Brendan noticed that the Capitol Police seemed to be ushering tourists to one side of the room, which made him suspect that someone notable was about to arrive. He thought maybe House Minority Leader Nancy Pelosi (Yay!) or House Speaker Paul Ryan (Boo!) We hung around hoping to catch a glimpse of whomever it was. Jane started to get restless, asking, "Can we go now?" but I asked her to be patient for a few more minutes. One of the police officers leaned over to us and whispered, "I'll let you know: it's the Vice President." At this point Jane asked, "Can we really go now?" (That's my girl!) But I had the morbid urge to see him in person, and vowed if he came to shake our hands that I would let him know the reason we were in DC and ask him to support the NIH and reasonable healthcare in general. As it turned out, he shook hands with folks on the opposite side of the barrier from us, so I didn't have the chance to speak my mind.
Jane's silent protest of the interruption by the Vice President |
The most exciting part of
our tour (I thought) was visiting the House Gallery where we watched the House
of Representatives voting on a bill. It
was House Resolution 1679, “FEMA Accountability, Modernization and Transparency
Act of 2017”. Not the most gripping of
legislations, it passed 419-0. Still, I
was enthralled. We could see our super Representatives
from Connecticut: Joe Courtney, John Larson,
Elizabeth Esty, Rosa DeLauro, and Jim Himes.
I think I squealed like a schoolgirl when Brendan pointed out Maxine
Waters! I confessed that, at this stage
in my life, I no longer follow Hollywood celebrities, but I get excited to see
famous politicians :)
With our tour done we said
goodbye to Brendan and made our way back to the Metro, back to NIH, where we
caught a shuttle to the airport and flew home.
We slept well that evening, thinking of our good news from NIH and our
exciting time on Capitol Hill.
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