Marathons for My Daughter

Sunday, April 12, 2015

Running Update:

3/22/2015	5.0 mi	46:49
3/24/2015	3.2 mi	29:48
3/25/2015	5.0 mi	49:11
3/27/2015	5.0 mi	44:44
3/29/2015	7.4 mi	1:12:11
3/31/2015	3.3 mi	29:01
4/1/2015	5.6 mi	53:01
4/3/2015	5.0 mi	46:00
4/5/2015	8.1 mi	1:18:07
4/7/2015	5.0 mi	48:59
4/11/2015	3.1 mi	28:45
4/12/2015	9.1 mi	1:30:29

Spring has sprung! What gorgeous weather. This weekend I put on shorts to run for the first time this year—hooray!

NF Update:

Nothing new to report with Jane’s NF, but instead a little anecdote that illustrated for me just how well Jane’s personality will serve her in dealing with the challenges she will face because of NF:

Recently Jane and I were tending to her scraped knee. She wanted to clean it herself because the soap and water stung it. She said to me, “When I have to do something that hurts, I say to myself, ‘Just do it, Jane. Just do it.’”

(Or perhaps dealing with NF has already taught her how to face life’s littler challenges?)

Jane and Family Update:

For spring break this year we drove up north to spend a few days in Montreal. Poor Alec got hit with a stomach bug the first night we were there, but we still managed to do a bit of sight-seeing and to have dinner with our cousin, Andrea. Montreal has a vast indoor nature complex that includes a planetarium, an insectarium, a botanical garden, and a biodome. We were able to visit the latter two sections before we had to head home.

Some pictures from the butterfly exhibit at the botanical gardens :)

Wednesday, March 18, 2015

Running and NF Update:

2/18/2015	5.1 mi	46:08
2/20/2015	3.2 mi	29:50
2/21/2015	13.1 mi	2:10:05
2/25/2015	5.0 mi	46:30
2/27/2015	5.0 mi	47:30
3/1/2015	9.9 mi	1:37:41
3/4/2015	5.0 mi	46:14
3/6/2015	5.2 mi	46:51
3/8/2015	7.6 mi	1:13:01
3/15/2015	13.1 mi	1:59:17

Another race done for the Children’s Tumor Foundation!

This past weekend I ran the NYC Half Marathon—what a fantastic race! Big, spirited crowds and great fun to be able to run through Central Park, Times Square, and by the World Trade Center.

We arrived the day beforehand so as to attend the Expo and to do a bit of sight-seeing. We were thwarted somewhat by heavy rain, but still managed to show the kids a bit of midtown Manhattan.

Times Square Selfie

Skating at Rockefeller Plaza

At the Expo with Neil and Angela

Jane's ready to cheer!

The NYC Half Marathon starts in Central Park and nearly all the first half of the race is run within it. I'd never run in Central Park, the quintessential running destination for so many New Yorkers. It is just lovely, even on a dark, late-winter morning. The park contains the only hills of the race—it was nice to get them over with early on.

The route then exits the bottom of the park at Mile 6, straight onto 7^th Avenue and into Times Square. Just imagine—a road race running right through Times Square! We were surrounded by enormous illuminated signs and crowds of cheering spectators. I learned that Times Square is closed only two times a year—once on New Year’s Eve and once for the NYC Half Marathon. Todd and the kids were watching in Times Square, but I missed them by just a few minutes when they ducked indoors to warm up (I was faster than they thought, and it was colder than they thought...)

A Chilly Breakfast

After Times Square we ran due west on 42^nd street, then turned south onto the West Side Highway. I found lots of motivation on the West Side: a rocking drum corps, an actual cheer-leading squad, complete with pom-poms and human pyramids. Great sights, too: we ran past the new One World Trade Center and had a view of Statue of Liberty. I also happened to notice Jane Street just above 12^th Street :)

In the final stretch of the race we entered the Battery Park Underpass—half a mile running through a tunnel! It offered much welcomed protection from the wind, inspired lots of whooping and hollering from the runners which echoed the length of the tunnel, and prompted many apt comments about seeing “the light at the end of the tunnel” :)

Right before the final turns of the course I spotted Angela Dumadag, the manager for the NF Endurance Team in New York and the woman who made it possible for me to run the NYC Half. She was very inspiring in her green wig and tutu!

A shot of Angela that made it onto the New York Road Runners website

The cherry on top of a wonderful experience—I was faster than I thought I would be! I didn't think I would be able to run the half marathon in under 2 hours, but I finished in 1:59:17. In case you were wondering, I was 201^st out of 889 females aged 45-49 :)

Jane scored another medal, too!

Thank you to Angela, the NF Endurance Team, and the Children’s Tumor Foundation, to my running partner, Neil, and our one-woman support crew, Marcia, and huge thanks and love to Todd and the kids for tolerating another crazy marathoning trek for me <3

And finally, thank you, New York! You're the best!

Monday, February 16, 2015

Jane update:

A reprieve!

The DC area is expecting 6-10 inches of snow so our return to NIH was canceled!! As wonderful as our care team at NIH is, I am relieved we don’t have to make this trip. Medical travel for me is always so stressful. Instead, we visited our hometown pediatrician this afternoon for a check-up and blood work. (As Jane’s favorite book characters, Ivy and Bean, would say, “Easy-peasy!”)

I never thought I'd be thankful for more snow this winter!

Oh my!

Since Todd had already promised to take Jane's older brother and sister snowboarding today, Jane and I found ourselves with an unexpected day off without plans! (Unprecedented!) So, at Jane’s request, we headed up to the Connecticut Science Center in Hartford. It was a madhouse there today since all the local schools are on break, but Jane is as happy as a clam—and so, therefore, was I :)

At the water table

The "Skin Crawling" climbing wall--part of the Human Body exhibit

Playing with a life-sized erector set

NF update:

One of the issues I reported to Jane’s team at NIH today (via e-mail) was her ongoing skin sensitivity. The combination of AZD6244, neurofibromatosis itself (for unknown reasons), and the winter air make for a very itchy Jane! We have managed to keep it somewhat under control with regular oatmeal baths, liberal moisturizers, intermittent steroid creams, and daily Claritin; nevertheless, her torso is crisscrossed with scratches. Another reason to look forward to spring.

Running update:

2/15/2015 9.1 miles in 1:30:23

I didn't want to fall behind in my training, so I attempted my long run yesterday, post-blizzard, post-shoveling. I felt pretty good while out there, though I struggled on the streets that were sub-optimally plowed—I felt like I was running through sand. I cut it a bit short. (I was supposed to do 11 miles.)

Anyway, last night I could. Not. Move. I felt like I had run a marathon. Ibuprofen was my friend.

But remember, today snow is my friend!

Saturday, February 14, 2015

Running Update:

1/16/2015	5.0 mi	46:45
1/18/2015	7.6 mi	1:14:33
1/19/2015	3.2 mi	32:13
1/21/2015	5.0 mi	48:21
1/23/2015	5.0 mi	46:35
1/25/2015	9.3 mi	1:34:05
1/28/2015	7.6 mi	1:14:47
1/30/2015	5.0 mi	49:21
2/1/2015	10.1 mi	1:39:40
2/4/2015	3.2 mi	31:17
2/6/2015	7.6 mi	1:12:26
2/8/2015	9.2 mi	1:31:55
2/11/2015	5.0 mi	46:00
2/13/2015	7.7 mi	1:12:44

The NYC Half Marathon is one month from tomorrow! I’ve managed to keep up with my training plan pretty well, despite the nearly continuous snow this month. It's been a while, but I crossed the "miles-to-degrees" threshold again yesterday: 7.6 miles in 7 degree weather. Stats like that make geeky runners like me happy :)

Speaking of running in the cold, today thousands of people worldwide helped to raise money for the Children’s Tumor Foundation through an increasingly popular race called Cupid’s Undie Run. Participants run a little over a mile in their underwear on Valentine’s Day. Since it began in 2010, the race has grown to include dozens of cities worldwide and has raised $3.2 million to end NF! How great is that?

Finally, have to share a video my friend Alice recently sent me. Stand-up comic-and-runner Liz Miele shares her thoughts on marathons:

Jane Update:

Jane lost her second tooth! Unfortunately, it came out while she was sledding and got lost in to the snow. No matter—Jane set things right with the Tooth Fairy:

"Dear Tooth Fairy, I lost my tooth in the snow. Can I please have money anyway? Please respond."

NF Update:

Jane and I return to NIH in two days just for an overnight—for blood work and a physical exam with our care team.

Jane isn’t scheduled for another MRI at NIH until June, but every time she has had an MRI, she has needed to be sedated. This is because a patient needs to lie perfectly still for the entire length of an MRI scan, which can last over an hour. Since Jane’s had more than a dozen MRIs (about 18? I’ve actually lost count…), that means she has had more than a dozen episodes of general anesthesia, and that’s not great for a growing brain! Once children are old enough to lie still for long periods of time they can start training for a non-sedated MRI. (The age depends on the child, but many facilities won’t even consider children less than 8 years.)

To that end, we’ve wanted to start Jane’s training. As luck would have it, we happen to have access to several scanners, thanks to my husband, Todd ;) Yesterday the kids and I went to visit Todd at work, where we all practiced getting in the MR scanner. Jane was the only kid who stayed in long enough to have a quick scan! It only lasted three seconds, but it’s a good first step.

Wednesday, January 14, 2015

Running Update:

1/7/2015	5.0 mi	47:53
1/10/2015	5.0 mi	46:29
1/11/2015	5.2 mi	49:25
1/14/2015	5.0 mi	45:27

Happy New Year! January brings a fresh start to my running log! I’ve been planning out my running schedule for the year, and I have the opportunity to try a new race this spring: the New York City Half Marathon in March. This will be the first time in two years that I won’t be running a spring marathon, and I confess it feels like something is missing! I thought maybe running a half marathon in a new city with an actual team (instead of a virtual one) might make up for it. I am looking forward to running with the NF Endurance team in the hometown of the Children’s Tumor Foundation—New York City!

With that in mind, I’ve made out a new training plan for the NYC Half:

(Of course, as usual, I’m still planning the New Haven Road Race and the Hartford Marathon in the fall, but that seems like a long way away right now!)

Anyone who wants to get in an early donation can go to our new site here: http://ctf.kintera.org/nfecyoe2015/krath4jane :)

NF Update:

We already have another return trip to NIH planned for next month—an overnight February 16-17 for a physical exam and blood work. Now that it’s been almost a year that Jane has been taking AZD6244 she doesn’t have to have blood drawn every month. After our February visit to Bethesda Jane won’t need blood work again until she sees our home town pediatrician in April, and we won’t need to return to NIH until June (her next MRI).

Jane (and family) Update:

We had a wonderful week in Canada over the New Year’s holiday! We spent time with family and friends that we don’t get to see often. We visited the Winnipeg Zoo and saw baby polar bears! We spent five days at the cottage in Echo Bay on the Lake of the Woods in Northern Ontario, where we did all sorts of things that you can’t do in the summer: played under the dock, hiked through the beaver swamp and the bush around the cottage without getting wet or scratched, played in a secret fort set in the sheer rocks along the shore. Here’s more of our adventures (Thank you, Todd and Linda, for the photography!):

Doing crafts with Grandma

If you sit still long enough, the whiskey jacks will take seeds from your hand.
(See him sitting next to Helen?)

View of the cabin (in the middle) from the island

Crazy fisherman (Uncle Mike) in his ice fishing hut

Curling with the neighbors.
Grandma froze colored water in about a dozen plastic jugs for homemade curling stones,
which we played with on the ice.

More curling

Grandma Janet and me

Jane sledding!

Alec surveying the course

Sparklers on New Year's Eve

...and fireworks!

Watching the display from the ice

One of the coolest parts of our New Year's Eve Celebration was releasing paper lanterns. (Thank you, Neil M!)
We sat in the lee of the island and set half a dozen lanterns off over the frozen lake.