Running Update:

1/3/2020	Run		5.0 mi	48:22
1/4/2020	Swim		1500.0 yd
1/5/2020	Run		9.1 mi	1:32:53
1/6/2020	Swim		1500.0 yd
1/8/2020	Run		5.0 mi	46:25
1/10/2020	Run		5.0 mi	49:14
1/11/2020	Swim		1900.0 yd
1/12/2020	Run		13.2 mi	2:14:22
1/13/2020	Swim		1300.0 yd
1/15/2020	Run		5.1 mi	49:53
1/17/2020	Run		5.0 mi	48:39
1/18/2020	Swim		2000.0 yd
1/19/2020	Run		9.1 mi	1:34:00
1/20/2020	Swim		2000.0 yd
1/22/2020	Run		5.0 mi	49:59
1/24/2020	Run		5.0 mi	45:30
1/26/2020	Run		10.3 mi	1:42:05
1/27/2020	Swim		2100.0 yd
1/29/2020	Run		7.6 mi	1:13:46
1/31/2020	Run		5.0 mi	45:21
2/1/2020	Swim		2100.0 yd
2/2/2020	Run		9.1 mi	1:28:52
2/3/2020	Swim		2100.0 yd
2/5/2020	Run		5.0 mi	48:00
2/7/2020	Run		5.0 mi	46:47
2/8/2020	Swim		2100.0 yd
2/9/2020	Run		9.1 mi	1:30:22
2/10/2020	Swim		2100.0 yd

Happy 2020!  My training is already off to a good start for the year, and believe it or not our first race of 2020 is only about a month away.  I’m starting the racing season with the NYC Half Marathon, as usual—this will be my sixth time running this event.

Here is my full schedule for the year:

NYC Half Marathon—Sunday, March 15th

Vermont City Marathon—Sunday, May 24th

New Haven Road Race Half Marathon—Monday, September 7th

New York City Marathon, 50th Anniversary—Sunday, November 1st

The full New York Marathon in November will be a first for me.  I hadn’t applied before because the race is just so big—over 50,000 runners, compared with about 30,000 in each the Boston and Marine Corps Marathons.  In larger marathons the runners start in “waves” of smaller groups with a short time delay between each group, but this means a long wait at the starting line for your group to be released.  Despite running in waves, with that many people you simply have less room to move.  Since I’m not an elite runner I start in the middle of a wave and stay surrounded by other runners for most of the race.  Lots of jostling and elbow-bumping!  However, I was inspired to register this year while watching last fall’s race and hearing that it would be the marathon’s 50th anniversary in 2020.  Since I turned 50 earlier this year, I figured it would be fitting for this 50-year-old to run a 50-year-old marathon!

Speaking of birthdays, I celebrated mine with Todd in New York City with dinner and a play.

"Harry Potter and the Cursed Child"
(Yes, I am a total nerd!  But a happy nerd.)

Jane Update:

After a bumpy 2019, so far, so good in 2020.  This week we had a follow up with the Pediatric Dermatologist who has been managing the persistent nail infections in Jane’s toe—a side effect of selumetinib—and I am thrilled to announce that finally, almost one full year after they started, the infections are gone!  The trick was a prolonged course of doxycycline, which is an antibiotic and anti-inflammatory.  Just to be on the safe side the doctor is keeping Jane on a lower dose of doxycycline for another month before deciding whether to stop it completely.

Now that her toes are healed, Jane can wear her new kicks, courtesy of the Children’s Tumor Foundation!  These were a thank you gift from CTF for our fund-raising last year.  NF’s “colors” are blue and green, hence the design.

Our next trip back to NIH will be at the end of March.

NF Update:

I recently discovered another NF organization, the Littlest Tumor Foundation (littlesttumor.org).

It was founded in 2010 in Wisconsin by Tracy Wirtanen when her 4 year-old son was diagnosed with NF.  (Go, NF Moms!)  Littlest Tumor Foundation is “a team of action-driven dreamers inspiring compassion, advancing research, empowering families, and raising awareness for neurofibromatosis (NF).”

I learned that back in 2010 the founder got to meet with President Obama and talk about NF!  Here is a photo and the transcript from the meeting:

Tracy Wirtanen: Hi. Thank you so much, Mr. President, for having us here. I want to thank you. I just have a comment. My son, Sammy, who was here, is seven and he has neurofibromatosis. I don’t know, have you ever heard of it?

THE PRESIDENT: You know, I’ve heard of it. But you should describe for us what that means.

TW: It means that he had a spontaneous mutation on his chromosome. And he was diagnosed two and a half years ago. And it just basically means your tumor suppressor doesn’t work properly, so every nerve cell has the potential of becoming a tumor.

THE PRESIDENT: Which is pretty nerve-wracking for mom.

TW: Oh, it’s unbelievable. And there’s a wide spectrum, so some people end up with minor complications but others have serious problems. And he’s already had surgeries and things of that nature. So I just want to thank you and the Secretary and congressmen and senators, because it’s life changing for a parent.

THE PRESIDENT: Well, Sammy looks terrific. I saw him running around here.

TW: He is terrific.

THE PRESIDENT: And I’m just glad to give you peace of mind. Look, people ask me sort of how do I stay calm in my job. The reason I stay calm in my job is that every night at six-thirty, no matter how busy I am, I go upstairs -- I’ve got a very short commute -- (laughter) -- and I go upstairs and I have dinner with my wife and my daughters. And as long as they’re doing good, as long as they’re healthy and happy and running around and telling me stories about the crazy things that happened at school today, then there’s a certain baseline that just gives you that sense, well, I can take anything, right?

Now, the flipside is when Malia or Sasha get a sniffle, or an ear infection, or a scrape, or a bruise, I’m over there just miserable. And I still remember Sasha, when she was three months old, one night she just wasn’t crying right. As a parent, you start recognizing, that’s not how she cries. She wasn’t hungry, it wasn’t a diaper change. Something was going on.

So we called our pediatrician, and he said, “Well, why don’t you bring her down?” And this was in the middle of the night. This is like one o’clock in the morning. And he was willing to see her, and he pressed on top of her head, and he said, “You know, she may have meningitis; I want you to go to the emergency room.”

And it turned out she had meningitis, and she had to get a spinal tap, and they had to keep her there for three or four days. And the doctor was talking about if this didn’t -- if her temperature didn’t come down and if we didn’t solve this, she could have permanent damage to her hearing or other effects.

But I still remember that feeling of just desperation, watching the nurse take her away to provide treatment for her. But I was thinking, what if I hadn’t had insurance? What if I was looking at my bank account and I didn’t have the money to cover her? How would I be able to face my wife, and how would I be able to look in the mirror if I didn’t feel like I could somehow make sure they were okay?

And that’s what this is about, ultimately. I mean, we’ve got to make sure that health care -- our health care dollars are used smartly. We’ve got to make the system work better for consumers. We’ve got to make it more responsive. But ultimately, the thing that’s most important is, we’ve just got to give people some basic peace of mind. And I’m just so glad that I’m able to stand here before you and hear these stories, and hopefully it gives you a little more peace of mind. (Applause.)

So, all right, well, thank you, everybody. Appreciate you. And if anybody else has any questions, they can come up and we can chat in the shade here. (Laughter.) Because I don’t have to go right away, and maybe we can -- these guys will take some pictures. So thank you.

I was so excited when I first discovered that President Obama knew about NF that immediately shared the story with my friend, Dara.  She said, “I bet Michelle told him about Jane”, alluding to the letter that Jane received from the First Lady back in 2016 :)

Thinking about Barack and Michelle Obama makes me think of politics, something I don’t usually include in my blog.  But I have strong enough feelings regarding the recent publication of the controversial novel American Dirt by Jeanine Cummins that I thought I’d dip my toe in.

American Dirt is a story of a Mexican woman and her son fleeing violence in their home to become an undocumented immigrants in United States.  It has been touted by some as “the Grapes of Wrath for our time”.  However, it was written by a white American woman without any Mexican heritage or personal connection to Mexico.  I’m on the side of its critics, who have condemned it as inaccurate, called it cultural appropriation, and even described it as “trauma porn”.  It is a much more egregious example of appropriation than the “inspiration porn” of the book Wonder, about which I’ve written.  Ever since I read Wonder I’ve been more sensitive to the argument over whether there should be limits to what a novelist can write about.  This multifaceted and nuanced debate is beyond the scope of this blog, but I confess I didn’t ever think enough about it until I felt punched in the gut by Wonder.  It took me a while to figure out why I felt that way, but it came down to it’s not her story to tell and more importantly, it’s not her story to profit from.

Helen Update!

On a much brighter note:  Jane’s older sister, Helen, is a high school senior this year, and just learned that she was accepted Early Decision at Mount Holyoke College.  We are so proud of her and so happy for her!  MHC Class of 2024, here she comes!

PS  Thanks to EC for her editing advice <3