Summer of 2020 update:

I often skip the summer months in this blog—typically there are no races and no NIH visit, so not much to report on.  To kick off the fall racing season I usually post one end-of-summer update once we return from our summer trip to Canada visiting family.  This year, however, there was no trip to Canada—the borders are still closed.  And there’s no fall race season to speak of—all of my in-person races for 2020 are canceled.  (To be honest, I can’t envision races resuming even in the New Year.  Not until the pandemic is under control.)  So this update is just to fill you in on how we’ve altered our summer/fall plans.

 

Running Update:

6/29/2020		Swim	1300.0 yd			7/30/2020		Run	5.0 mi	50:16:00
7/1/2020		Swim	1500.0 yd			7/31/2020		Swim	1750.0 yd
7/3/2020		Swim	1500.0 yd			8/1/2020		Run	5.0 mi	50:06:00
7/5/2020		Run	5.1 mi	52:36:00		8/2/2020		Swim	1800.0 yd
7/6/2020		Swim	1400.0 yd			8/3/2020		Run	3.2 mi	32:12:00
7/8/2020		Run	4.6 mi	48:07:00		8/5/2020		Run	4.0 mi	41:22:00
7/10/2020		Swim	1800.0 yd			8/6/2020		Run	5.0 mi	50:26:00
7/11/2020		Run	5.1 mi	51:16:00		8/8/2020		Run	5.0 mi	50:09:00
7/12/2020		Swim	1500.0 yd			8/9/2020		Swim	1500.0 yd
7/14/2020		Swim	1200.0 yd			8/11/2020		Swim	1800.0 yd
7/15/2020		Run	5.0 mi	50:42:00		8/14/2020		Run	3.3 mi	32:03:00
7/17/2020		Swim	1400.0 yd			8/15/2020		Run	5.0 mi	49:21:00
7/18/2020		Run	5.0 mi	50:40:00		8/16/2020		Swim	1750.0 yd
7/19/2020		Swim	1800.0 yd			8/17/2020		Run	5.0 mi	48:24:00
7/21/2020		Swim	1750.0 yd			8/19/2020		Run	5.0 mi	48:55:00
7/22/2020		Run	3.1 mi	30:59:00		8/21/2020		Swim	1500.0 yd
7/24/2020		Swim	1600.0 yd			8/22/2020		Run	7.2 mi	1:12:05
7/25/2020		Run	4.1 mi	40:46:00		8/23/2020		Swim	1800.0 yd
7/26/2020		Swim	1600.0 yd			8/24/2020		Run	3.2 mi	31:12:00
7/27/2020		Run	5.0 mi	49:27:00		8/25/2020		Swim	2000.0 yd
7/28/2020		Swim	1500.0 yd			8/26/2020		Run	5.0 mi	47:54:00
7/29/2020		Swim	1400.0 yd

I’ve slowly gotten back into running since my heel fracture.  In case you’ve ever wondered how long it takes this amateur, middle-aged woman to completely lose all running fitness, the answer is “five weeks or less”.  And it certainly takes a lot longer to get back in shape than it does to get out of shape.  So discouraging!  I’ve supplemented with swimming—our town pool opened up with restrictions (lap lanes are by reservation only, limited to 45 minutes blocks).

Now that I can run again I have to figure out how I’m going to fund raise for CTF this fall!  Both the New Haven Road Race (which I’ve run eleven years in a row) and the New York City Marathon (which I was to run for the first time) have been canceled.  I’d like to do something slightly more creative than just a virtual race like I did for this spring’s NYC Half.  Any ideas?  What endurance challenge could I perform that would make YOU want to donate to end NF?

NF Update:

We are so grateful to have the MEK inhibitor selumetinib to fight Jane’s NF, but side effects continue to be a challenge.  Last year was chronic paronychiae (nail infections).  This year it’s a stubborn inflammatory rash on Jane’s chest and back.  Since March we’ve been trying various treatments, with the help of our team at NIH and our wonderful local pediatric dermatologist, to varying degrees of success.  This summer it really flared leaving Jane itchy and miserable.  We finally had to take a break from selumetinib and have been off it now about three weeks.  The rash is almost resolved, but we need a plan to manage it better once Jane restarts the MEK inhibitor.

 

Also, it looks like another of our trips to NIH will be canceled.  This spring, when the pandemic first hit the East Coast, our visit to Bethesda was put on hold and we were able to forgo most of Jane’s usual semi-annual testing, and just have her MRI done at home.  This fall we’ll have to get all the testing done at home—regular physical exam; ophthalmology, ENT and dermatology exams; echocardiogram, EKG, blood work, and MRI.  No small feat!  Still, it’s safer than having to travel to another part of the country in this day and age.

Jane Update:

The kids and we made the most of the summer, despite the pandemic.  Instead of visiting Canada, the kids spent most of the summer at our beloved Deer Lake Camp.  I was so impressed with how well they ran their program this summer—even with strict COVID protocols it was still as much fun as always.  (And no one got sick!)  Both Helen and Alec were counselors this summer, and Jane was in her last year as a camper—hopefully she’ll be a counselor-in-training next summer!

Helen and Alec at camp on Dress-As-Your-Favorite-Holiday Day at camp.

(They went as Canada Day!)

Jane went through a rite of passage that even a pandemic couldn’t prevent—braces!  She has ceramic brackets instead of the traditional metal ones so that she can have her MRIs without removing the brackets.  She’ll just have to have the wire removed and replaced before and after each scan—much easier.

School restarts here in Madison next week following a hybrid model—two days in school and three days from home.  We’re hoping everyone stays healthy.

 

Helen update!

Our amazing Helen graduated high school, turned 18, worked all summer, and started college, all during a pandemic!  We’re so happy for Helen that she is able to attend college in person this fall, though with only a fraction of the students on campus. It won’t be a normal first year experience, but as a good friend said to me, it might be better--possibly less crazy and intense.

Helen's home for the next three months!