Running Update:
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3/18/2020
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Run
|
|
7.6 mi
|
1:15:44
|
|
3/20/2020
|
Run
|
|
5.0 mi
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44:49
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|
3/23/2020
|
Run
|
|
7.6 mi
|
1:17:21
|
|
3/25/2020
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Run
|
|
5.0 mi
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49:30
|
|
3/27/2020
|
Run
|
|
10.2 mi
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1:42:20
|
|
3/30/2020
|
Run
|
|
7.5 mi
|
1:13:47
|
|
4/1/2020
|
Run
|
|
5.0 mi
|
48:03
|
|
4/3/2020
|
Run
|
|
5.0 mi
|
50:01
|
Just
before my last post the NYC Half Marathon had been canceled due to
COVID-19. Not surprisingly, the Vermont
City Marathon scheduled for May has now also been canceled :(
So as of this moment, I don’t have any races
planned until the New Haven Road Race on Labor Day. I’ll continue to train, and if the pandemic
abates sooner than expected, maybe I’ll find a summer race to register
for. But for now, I’m just going to
maintain my miles.
In other
pandemic/running news, it turns out that Dr Anthony Fauci, Director of the
National Institute of Allergy and Infectious Disease, is an avid runner. (As if we needed a reason to love him more!) At age 79 he still runs 3.5 miles a day, even
when working 19-hour days during the current coronavirus pandemic! Read about his running here.
NF Update:
More good
news regarding selumetinib, Jane’s study medication. Phase II of the NIH clinical trial of
selumetinib for plexiform neurofibromas was published in the New England Journal of Medicine on March 18.
Jane
started on the drug in Phase I, the results of which were published in the NEJM
back on 12/29/16. I wrote about
it here: nfemom.blogspot.com/2017/01/.
When the
National Cancer Institutes tweeted about it, they used a picture of Jane and
me!
The Director
of NIH, Dr Francis Collins, wrote an article reflecting on the study. In it he gives some background about NF and
describes his personal connection to NF patients:
Jane Update:
As
anticipated, our 6-month return visit to NIH this week was canceled due to
COVID-19. This is the email we received
from our team last week:
Our team has reviewed J in
detail during our NF Clinic this morning, as our study sponsor said that our
team could decide which evaluations would be necessary to complete, either at
home or NIH and either now or in the future, for J to continue on MEK/Selumetinib. Based
on that, J does NOT need to come to NIH for any evaluations.
J’s next visit to NIH will be for her pre-cycle 83 visit. I’m including a list of each evaluation that J
would have had completed below, with our thoughts on each:
- H&P with Anne: We will do this “virtually” over FaceTime
through our phones.
- Vital Signs: Not necessary at this time and will be deferred
- Measurements (Height, Weight, & Body Surface Area): Not
necessary at this time and will be deferred
- Labs: Not necessary at this time and will be deferred
- Urine: Not necessary at this time and will be deferred
- MRI: We would recommend having an MRI done at home, when it
is safe to do so, given the current COVID-19 restrictions. Our first
priority would be a clinical MRI of J’s abdomen, and if J was going in for
the abdominal MRI, to also get a face/sinus/ENT MRI (what we use for the
MEK re-staging), since we did reduce her dose of MEK in October.
- Echocardiogram: Not necessary at this time and will be
deferred
- Eye Exam: Not necessary at this time and will be deferred
- EKG: Not necessary at this time and will be deferred
- Additional Consults:
- ENT: Not necessary at
this time and will be deferred
- Dermatology: Continue management
with dermatologist at home.
- Neurosurgery: Depending
on when the MRI will take place, would determine when we proceed with the
Neurosurgery consult.
As of this
moment Jane is scheduled for her MRI at home in mid-May, the first available date
since all non-urgent medical appointments in our area are on hold until after
April 30. It might be that this date
will get pushed back as well depending on what happens with the pandemic, but
we’ll take one day at a time.
 |
| A FaceTime visit with Anne, the Nurse Practitioner on our team. |
In happier
news, we celebrated Jane’s 13th birthday this week! We joked that she is now a “quaran-teen”. She won’t be able to celebrate with her
friends in person, but we had a family celebration and I even managed to
procure an ice cream cake, Jane’s favorite.
Singing for Jane!
 |
| Thirteen presents for a thirteen-year-old! |
 |
| Lego Orthanc! More exciting than the books :) |
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