Marathons for My Daughter: NF Awareness Month

Sunday, May 16, 2021

NF Awareness Month

Running Update:

Week of 3/15/2021	25.1 mi	4:11:00
Week of 3/22/2021	28.2 mi	4:26:59
Week of 3/29/2021	23.2 mi	3:44:56
Week of 4/5/2021	22.4 mi	3:40:05
Week of 4/12/2021	29.8 mi	4:52:04
Week of 4/19/2021	20.4 mi	3:16:16
Week of 4/26/2021	22.4 mi	3:37:25
Week of 5/3/2021	23.6 mi	3:50:59
Week of 5/10/2021	16.2 mi	2:40:05

Lots of running since my last post! And in this past week my running mileage dropped off a bit because I started swimming again—it felt good to get back in the pool (though my arms were pretty sore at first). I’ve registered for an in-person half marathon, the Cheshire Road Race in July, and training started this week. It would be my first real road race since the pandemic started, and I’m still not sure how I feel about it. Here are the Safety Guidelines posted for the race so far:

The half marathon is limited to 1,500 participants.
Participants will line up, socially distanced, based on their estimated pace time for a rolling start.
Start lines will be located in the Cheshire High School parking lot to allow for socially distanced starts.
NO race day registration is available.
Masks required at all times. Participants may remove their masks while running and while drinking water, but must wear them when passing others on the course and in the start and finish areas.
NO baggage claim.
NO official pacers at the 2021 event.
Numerous hand sanitizer and washing stations.
On-course water stations with single-use bottles.
Pre-packaged grab-and-go food bags & bottled water at finish line.
Socially distanced portable toilets.
Results not available on site. Will be posted online on race day by mid-afternoon.
Awards will be mailed to participants. Awards will not be presented on site.
If you are sick or have flu-like symptoms, please stay home! Participants have until 6:00am on race morning to defer to our 2022 event if you are feeling ill or are uncomfortable joining us at our live event.

I’ll wait and see what’s happening with the pandemic and the race as we get closer to the date.

Jane Update:

Meanwhile, Jane had a great recovery after her surgery in March. She was back at school in-person within two weeks, and even back to playing soccer within a month! She restarted selumetinib about three weeks ago and we’ve managed to keep the selumetinib-induced rash from returning in full force to her torso with the help of doxycycline and a topical steroid. We haven’t had as much luck with the rash on her face, but so far it has been tolerable.

We were disappointed to learn that NIH wants us to return in August for another check-up. We had thought we would have a respite from NIH testing and travel until the end of the year, but our team feels that that might be too long without an MRI done on site, especially now that the pandemic is lessening. We haven’t made solid plans yet, but looks like we’ll go back there sometime right before school starts.

Some happy milestones, in photos: