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!

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. 

~~~

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.

~~~

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!

Running Update:

4/29/2020	Run		9.1 mi	1:30:41
5/1/2020	Run		7.6 mi	1:14:23
5/4/2020	Run		5.0 mi	48:14
5/6/2020	Run		5.0 mi	48:35
5/8/2020	Run		8.0 mi	1:18:44
5/9/2020	Run		3.2 mi	30:18
5/11/2020	Run		5.0 mi	47:44
5/13/2020	Run		9.1 mi	1:30:01
5/15/2020	Run		5.0 mi	48:09

Still maintaining...


Jane Update:

Jane had her MRI earlier this week at the Yale's Trumbull facility (the only place locally they're doing pediatric MRIs). For the first time ever I was more nervous about bringing her into a medical facility than about what the MRI might show.

 

It was quite a novel experience.  Jane hadn't been out in public since school closed 3/13!  She knows what's been going on with the pandemic and with social distancing, but it was a different matter to actually experience needing to wear a mask and staying 6 feet apart from people.  I think she was a little shocked by the process.  I was a bit overwhelmed myself!  I've been working in the COVID call center, but I haven't had direct patient care since March, either, so even I had some culture shock with having our temperature taken at the entrance to the facility.  We both wore masks and old clothes so we could throw them in the laundry as soon as we got home.

 

The staff at the MRI center could not have been more welcoming, professional, and reassuring.  Jane tolerated an hour and a half in the scanner, complete with IV and contrast.  She's a rockstar.


I got a disc with the MR images and uploaded them to NIH the next morning, and our team reviewed them at their NF Clinic later in the week.  I am happy to report the abdominal nodule is very stable in volume and has no change in its appearance, so both of these things are reassuring.  However, our team continues to think that removing the nodule is reasonable, not because they have concerns for malignancy, but because of its location and potential to affect Jane’s kidney in the future.  Therefore, we’ll be meeting remotely sometime soon with the team’s neurosurgeon and urologic surgeon to discuss the implications of a surgery.  We are still waiting on the volumetric analysis of Jane’s facial plexiform neurofibroma but the team doesn’t have any concerns of obvious growth, which is a great news, between hold on Jane's selumetinib this past year and lowering the dose.

 

While we're waiting to talk to the surgeons and for the plexiform volumes we'll continue on Jane's current dose of medication and plan a return trip and repeat MRIs in the fall.

 

NF Update:

Meanwhile, NF Awareness Month going strong!  The Children's Tumor Foundation really outdid themselves with their campaign this year.  Their theme all this month is "Make NF Visible", and they have done an outstanding job bringing it all together, especially during a pandemic.  My favorite parts (so far) are the Make NF Visible Portraits and the upcoming NF Zoomathon scheduled for May 17 (World NF Awareness Day).


For the portraits, they partnered with award-winning photographer Craig Warga, whose son also has NF, to look at the different ways NF can affect a person’s life, even when no one else can see.  They paired people with NF who have manifestations that can be seen with those whose affectations can’t be seen, as a way to highlight the visible and invisible ways NF makes itself palpable in a person’s life. They comment, "Life with NF can mean living with things like brain tumors and café au lait spots, neurofibromas and learning difficulties, loss of hearing and excruciating pain, successful surgeries, failed clinical trials, physical scars, emotional wounds, cross-country networks, unspoken understanding, and unbroken bonds."  You can view them below or at the CTF website:  https://www.ctf.org/understanding-nf/make-nf-visible

Jane’s quote hit me in the heart: "I think it is important for people to know about NF because you don't know what someone might be going through if they have NF and I feel it is easier to talk or comfort people if they know what I am talking about."

MY HEART <3

The Zoomathon to benefit the Children's Tumor Foundation is being hosted by actor/producer Jonathan Sadowski and will bring together well-known actors, musicians, athletes, comedians, chefs, magicians, celebrities, and NF Heroes (including JANE!) all combining forces to make sure the world knows about neurofibromatosis and TO MAKE NF VISIBLE!  It will be live streamed at www.ctf.org/heart, with links provided to view on Facebook, YouTube and closed-captioned on Zoom. You can watch a preview here!  Please tune in between 7-9pm (ET) on Sunday--it's going to be so exciting!