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| Henri and me (photo for attention!) |
My blog posts have dropped off this year since I primarily write about Jane’s and my trips to NIH and my fund-raising races—but this year all trips and races have been canceled! We’re doing our best to adapt.
Running Update:
What do you do in a year without races if your primary fund-raising method is running marathons? You get creative. This fall I’ve joined the Children’s Tumor Foundation NF Endurance Team in their virtual #EndNFChallenge. The goal of the #EndNFChallenge is for our nationwide team to collectively log a total of 2.5 million minutes of endurance activity between September 1 and November 15 in honor of the 2.5 million people around the world living with NF. I’m planning to log 2500 of those minutes myself!
Week 1
(9/1/20-9/7/20): 5:03:19 = 303 minutes
|
9/1/2020 |
Swim |
|
2000.0
yd |
53:00 |
|
9/3/2020 |
Run |
|
7.6
mi |
1:15:32 |
|
9/5/2020 |
Run |
|
7.6
mi |
1:15:34 |
|
9/6/2020 |
Run |
|
5.0
mi |
49:21 |
|
9/7/2020 |
Run |
|
5.0
mi |
49:52 |
Week 2
(9/8-9/14): 4:20:06 = 260 minutes
|
9/9/2020 |
Run |
|
7.1
mi |
1:11:15 |
|
9/11/2020 |
Run |
|
5.2
mi |
50:12 |
|
9/12/2020 |
Run |
|
9.1
mi |
1:31:43 |
|
9/14/2020 |
Run |
|
5.0
mi |
46:56 |
Week 3
(9/15-9/21): 5:01:11 = 301 minutes
|
9/15/2020 |
Swim |
|
1200.0
yd |
32:00 |
|
9/16/2020 |
Run |
|
7.5
mi |
1:16:02 |
|
9/18/2020 |
Swim |
|
1500.0
yd |
39:00 |
|
9/19/2020 |
Run |
|
7.5
mi |
1:15:07 |
|
9/20/2020 |
Swim |
|
1750.0
yd |
45:00 |
|
9/21/2020 |
Run |
|
3.6
mi |
34:02 |
Week 4
(9/22-9/28): 5:10:51 = 311 minutes
|
9/22/2020 |
Swim |
|
1500.0
yd |
40:00 |
|
9/23/2020 |
Run |
|
5.2
mi |
50:22 |
|
9/25/2020 |
Run |
|
3.4
mi |
33:18 |
|
9/26/2020 |
Run |
|
9.1
mi |
1:32:26 |
|
9/27/2020 |
Swim |
|
1700.0
yd |
46:00 |
|
9/28/2020 |
Run |
|
5.0
mi |
48:45 |
Week 5
(9/29-10/5): 3:50:29 = 230 minutes
|
9/29/2020 |
Swim |
|
1200.0
yd |
31:00 |
|
9/30/2020 |
Run |
|
7.6
mi |
1:14:34 |
|
10/2/2020 |
Swim |
|
1200.0
yd |
31:00 |
|
10/3/2020 |
Run |
|
5.0
mi |
46:59 |
|
10/5/2020 |
Run |
|
5.0
mi |
46:56 |
Week 6
(10/6-10/12): 5:42:52 = 343 minutes
|
10/6/2020 |
Swim |
|
1600.0
yd |
40:00 |
|
10/7/2020 |
Run |
|
7.5
mi |
1:14:58 |
|
10/9/2020 |
Swim |
|
1750.0
yd |
45:00 |
|
10/10/2020 |
Run |
|
9.1
mi |
1:29:33 |
|
10/11/2020 |
Swim |
|
1750.0
yd |
45:00 |
|
10/12/2020 |
Run |
|
5.0
mi |
48:21 |
I’m a
little over half-way through the challenge, and I’ve already logged 1748
minutes! If you’d like to donate to our
campaign, you can always do so here:
If you’d
like to participate in the #EndNFChallenge itself, you can register here: www.ctf.org/events/end-nf-challenge-fall-series
NF
Update:
The Washington Post recently ran an article about a young girl with neurofibromatosis.
This is Jane's study, the one she started at Phase I and the one
that just got FDA approval this spring. The doctor interviewed—Dr Widemann—is
Jane's doctor, and as you all know we stay at the Children's Inn when we visit
NIH! I was thrilled to see the story featured by a prominent news
organization.
Jane
Update:
After more than a month and a half off the medicine, Jane restarted selumetinib a couple weeks ago. We noticed its side effects on her skin right away, but so far the rash is manageable.
Since the pandemic is preventing us from returning to NIH again this November, we’ve set up most of Jane’s “restaging” check-up for home. Tests and appointments that would normally take place over two days at the NIH Clinical Center are being spread out over two weeks at home. Here’s the line-up:
Week
1: EKG and echocardiogram. Orthodontist
appointment (to remove the metal wire in Jane’s braces in preparation for her
MRI). Facial and abdominal MRIs. ENT appointment.
Week 2: Orthodontist appointment (to replace the wire). Check-up with our Pediatrician. Blood work. Dermatologist appointment. Ophthalmologist appointment.
As you can imagine, the above schedule takes up most of Jane’s after-school (and some in-school) time for those two weeks! Lots of driving to doctors’ offices and waiting in cars (since we can’t wait in waiting rooms these days).
~~~
Jane’s school has been
following a hybrid model since the beginning of the school year, but this week
will change back to full-time, in-person learning. We’re hoping everyone will continue to stay
healthy. Meanwhile, she’s been playing
soccer for the town (masks required on the sidelines but not on the field) and
enjoying the fall weather.
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| Jane is lucky number 7 |
Big
Sib Update:
Some pictures of Jane’s big
sister and brother for a change!
 |
| A socially-distanced visit with Helen (with Henri) at college |
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| Alec got his driver's permit! |
