Running Update:
June swim 10.2 mi 7:20:00
July swim (to date) 7.2 mi 5:21:00
The summer
has been busy so far. With work and
training and with all three kids home, I haven’t had a chance to blog. I’m happy to report that I’m keeping up with
my running schedule, and that the limiting factor in my training has not been
my knee, but the heat and humidity! I’ve
been able to manage my weekly long runs by starting in the early morning and by
strategically placing water bottles at various points on my route the night
before :)
Jane Update:
We didn’t
get the final results of Jane’s last MRI until the end of May, but were pleased
to learn that her tumor is still officially stable.
During our visit at NIH this spring, our team discovered a new defect in Jane’s vision, but we hadn’t budgeted enough time in our trip to see the ophthalmologist at NIH. Back at home had to scramble to see our own ophthalmologist semi-urgently, which led to several stressful days. (Aside: I hate the whack-a-mole nature of this disease. NF is relentless.)
The good news is that it turns out there is no new NF
complication. Phew. She just needs glasses! She wasn’t thrilled, but at least it’s not
another GD tumor. And I told her I would
get (reading) glasses with her in solidarity, since I’ve been putting that off
for a couple of years now.
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| Jane's selection. (She would not pose for a photo wearing them!) |
NF Update:
A
milestone for NF: a prominent advertisement in the New England Journal of
Medicine! I was leafing through a recent
copy of the NEJM and the word “plexiform” caught my eye on the back cover. It turned out to be a commercial by SpringWorks
Therapeutics, which is trialing another MEK inhibitor, mirdametinib. (Jane takes selumetinib, the first MEK
inhibitor approved for NF.) Seeing the promotion
of NF therapies in a place where I’d normally see advertisements for diabetes
and blood pressure medicines made me feel like we’ve reached a new level of NF
awareness <3
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| Back cover of the 7/11/24 issue of the New England Journal of Medicine |
