Monday, September 23, 2019


Running Update:
9/6/2019
Run

5.0 mi
48:49
9/8/2019
Run

7.6 mi
1:16:29
9/11/2019
Run

12.4 mi
2:09:43
9/13/2019
Run

5.0 mi
48:42
9/15/2019
Run

5.0 mi
50:24
9/18/2019
Run

7.6 mi
1:15:53
9/21/2019
Run

18.6 mi
3:16:18
9/22/2019
Swim

1700.0 yd

One month until I run the Marine Corps Marathon in DC for the Children’s Tumor Foundation. I’m into my final stretch of training.  One more 20+ mile run before I start to taper.  We are not yet quite at our fundraising goal for the year—if you haven’t had a chance to donate, you can do it here now!

A tremendous thank you to all who have already given!


Jane Update:
Jane is back to school and settling in to 7th grade.  She is at a new school this year but is finding her way around and very much liking her new teachers.

First day of 7th, 12th, and 10th grade!


Two weeks ago, Jane saw the podiatrist to have the outer sides of her big toenails removed to treat and prevent the recurrence of the infections caused by her study medication, selumetinib.  We were very apprehensive before the visit, but it could not have gone any better. The doctor was lovely and kind, and told Jane everything that he would be doing and why.

(An aside, while we were waiting in the exam room Jane noticed the various instruments that were laid out for the doctor.  When he came into the room she asked, "Is that a dremel?"  He was surprised and impressed, and said that it was, in fact, a dremel, but that no 12-year-old had ever identified a dremel for him before.  Jane told him that her grandparents in Canada have one, but we reassured him that it was a wood-carving kind, not a foot-carving kind.  He laughed.)

The pinches for numbing medicine were unpleasant, but after that Jane didn't feel a thing.
To distract her while the doctor was operating, I let Jane use my phone to do some New York Times crossword puzzles.  She would read aloud the clues she couldn't answer, and the doctor and I would chime in!  Crossword puzzle lovers--you would have liked him.  He knew that 6-Down "Gangster group in Tokyo" was "The Yakuza" and that 20-Across "Maker of the Rio and Sorento" was "Kia".  He even gave Jane several extra pairs of disposable socks because she had admired the ones he had put on her.  We were both so relieved.

We weren’t sure how uncomfortable she would be when the numbing medicine wore off, but the doctor reassured us that Tylenol would be sufficient to help it.  After such a good visit we were inclined to believe him, and he was right—Jane was fine.  Not only that, but he gave Jane the go-ahead to play soccer after just a few days!  The season has only just started, and we were worried she’d have to be out for a couple of weeks.  But Jane ended up missing just one practice, and didn’t miss any games with her team, and her toes haven’t held her back at all.

We had a follow-up visit with the podiatrist today and he said that Jane’s toes were looking good.  Hoping now we will get the green light to start back up on selumetinib.

Jane's toes after the procedure
 One week until we finally return to NIH.  I’ll be sure to report back on our experience.


NF Update:
The first week in September I got to meet Vanessa Martin, the founder of the ChildhoodTumour Trust in the UK!  Vanessa was traveling with her daughter to the Children’s Tumor Foundation’s annual NF Forum in San Francisco and had stopped on the East Coast for a week of sightseeing.  We met up in New Haven at Claire’s Corner Copia for lunch!  What a pleasure to meet them.

Vanessa, me, and Nicole on Chapel Street in New Haven



They even brought me a gift for Jane from CTT! 




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