Running Update:

5/18/2020	Run		5.0 mi	47:17
5/20/2020	Run		5.0 mi	47:43
5/22/2020	Run		7.6 mi	1:15:18
5/23/2020	Run		5.0 mi	48:06
5/25/2020	Run		5.0 mi	48:25
5/27/2020	Run		7.5 mi	1:14:58

Even though it’s June 17, May 27 is my most recent running entry because on that day I went and broke my heel!  It wasn’t even a running injury—I was foolishly standing on a chair to open a window and lost my balance.  It turns out I cracked my calcaneus and I’ve been in a boot ever since.  It looks like it’s going to be a while before I’m running again :(  My back-up sport is swimming, but since the pools and beaches here are still not fully open, I can’t swim right now, either.  I confess I am an unhappy camper!  The perfect running weather we’ve been having lately isn’t helping.  I’m trying to keep in running shape with some weight and strength training so I can jump back into training as soon as I am able.  I am thankful I don’t have any races scheduled for the near future (and who knows what will even happen with races this fall?)

Every year I try to run 1000 miles to fund raise for NF, so by each July 1 I like to have completed 500 miles.  On May 27 I was at 442.8 miles for 2020, so I thought I was golden—not anymore!  I might have to find an alternate goal this year…

NF Update:

There’s been so many more important things going on in the world that I hadn’t posted a follow up to our discussions with NIH and from NF Awareness Month.

Since my last post we had a very helpful and informative phone conversation with Dr Prashant Chittiboina, the neurosurgeon from NIH who will be following Jane’s abdominal tumor.  He is still recommending that the tumor be removed but he felt that this surgery would be considered "elective" at the moment, and suggested the following time frame:  repeat abdominal MRI in September at our next NIH visit.  If the tumor was stable, consider following it with imaging and then plan for surgery next summer (or over some other school break) so that Jane wouldn't have to miss school and to allow for the pandemic to be under better control.

The next step in this process is to consult with the team’s Urologist at NIH to see his thoughts on surgical removal of the tumor, specifically to see if it could be removed robotically or if it would require an open surgery.  The plan is to meet them both surgeons in person at our visit to NIH in September. 

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Next I have a few videos to share from the final days of NF Awareness Month in May.  First is the broadcast of Home Is Where the Heart Is, a Zoomathon held on May 17 (NF Awareness Day) to benefit the Children’s Tumor Foundation.

You can see Jane’s interview starting right at the 10 minute mark!

And remember all the gorgeous Make NF Visible portraits I posted last month?  Here is a montage of interviews with the subjects of those portraits, including Jane.

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Finally, even though it was approved by the FDA almost two months ago, I got a thrill seeing Koselugo listed on our hospital formulary.  That makes it seem even more real.

Jane (and family) Update:

We have two big news items from our family this month.  The first is that we got a dog!

Meet Henri:

Yes, we have a Pandemic Puppy, and we are all in love—even me, who had been the most reluctant to take the plunge <3

The second is that Helen graduates from high school this week!  As everyone knows, the Class of 2020 everywhere has had its senior year celebrations curtailed, and Helen’s class is no different.  Still, our school system has tried its best to host some special senior events to honor them.  They’ve had a couple of drive-in activities and the local movie theater displayed all the graduates’ names on its marquee. 

Graduation itself will also be drive-in: each family is allowed one car per graduate. After the usual student and faculty speeches, the students will be able to walk across the stage to receive their diplomas.  The students were even each given special a black mask with a tiger paw (the school colors and mascot) with their cap and gown!  The event will be livestreamed for out-of-town friends and family, and after the ceremony there will be Class of 2020 vehicle parade to the town green.   No handshakes or cap tossing this year, but we are thankful we will be able to celebrate Helen and her classmates together.

Congratulations, Class of 2020!