Running Update:

8/17/2016	7.1 mi	1:07:26
8/19/2016	4.5 mi	42:36
8/21/2016	19.0 mi	3:12:36
8/22/2016	3.3 mi	30:40
8/24/2016	7.6 mi	1:11:55
8/26/2016	5.0 mi	48:25
8/29/2016	3.3 mi	29:46
8/31/2016	7.2 mi	1:08:48
9/2/2016	5.0 mi	45:07
9/5/2016	13.1 mi	1:58:02

Yesterday I completed another half marathon for the Children’s Tumor Foundation, this time the New Haven Road Race. For the first time the NHRR offered a half marathon in addition to its 5K and 20K races.  We could not have asked for better weather.  The forecast had been for significant wind and rain to be brought in by Hurricane Hermine, but all it brought was cooler, dryer weather than we’ve had in many weeks.  Perfect for a race! 

I was pleased to finish under 2 hours.  It wasn’t a PR, but out of 73 women in my age group, I placed 16th!  Perhaps all the fast people were scared off by the weather predictions from earlier in the week :)

The day was made even better by the fact that I finally met another NF Mom with whom I had corresponded for almost two years.  Diane, whose 3-year-old son has NF, ran the first leg of a half-marathon relay.  We had tried unsuccessfully to meet up before the start of the race. However, just after I crossed the finish line I saw a spectator wearing a CTF hat—it was Diane!

Lining up

At the start

Near the finish

Meeting Diane!

Me, Diane, and Jane

Grandma, Todd, and the kids were all there to cheer me on!

Jane and me with Diane and her relay partner

Next up: training for the Hartford Marathon on October 8th.

Jane (and Alec and Helen) Update:

Today the kids started back to school!  Both Helen and Alec started new schools today.  Alec is now in 7th grade and Helen in 9th—high school!—and Jane is starting 4^th grade, her last year of elementary school.

Jane with her bus stop buddies

NF Update:

To show you how NF is never far from our minds, here is a snap shot of one of the (bazillion) school forms that came home for me to fill out today.  Most kids leave the “Current Medications” space blank.  On Jane’s form I can’t even put an actual approved drug name!  “AZD6244” isn’t an ordinary response.  Thankfully, our school nurse knows all about Jane’s history and treatment, so I don’t have to explain it to her.  But at the start of every school year we always brace ourselves for another round of educating the new people in Jane’s life about NF.

…Which is why we want to support the Children’s Tumor Foundation, for its advocacy on behalf of all folks with NF, and its search for a cure!  THANK YOU to everyone who has donated to our 2016 campaign so far!  If you haven’t yet, please do!  Here’s the link:  

www.krath4jane.com

Running Update:

7/6/2016	6.5 mi	1:04:12
7/8/2016	5.0 mi	46:54
7/10/2016	13.2 mi	2:08:51
7/11/2016	3.2 mi	28:19
7/13/2016	7.2 mi	1:09:28
7/15/2016	5.0 mi	49:00
7/17/2016	9.0 mi	1:28:46
7/20/2016	7.6 mi	1:13:29
7/23/2016	12.4 mi	2:03:08
7/25/2016	3.2 mi	27:43
7/27/2016	7.2 mi	1:08:29
7/29/2016	5.0 mi	47:37
7/31/2016	10.1 mi	1:33:17
8/2/2016	8.6 mi	1:24:21
8/4/2016	6.1 mi	1:00:08
8/6/2016	17.3 mi	2:50:00
8/8/2016	6.0 mi	55:00
8/10/2016	8.5 mi	1:23:06
8/12/2016	10.0 mi	1:37:48

Whew!  I guess I haven’t updated in a while.  It looks like a lot of running when you put it all together like that.

Last month a dear patient stopped by my office to bring me this sketch she had made for me.  She was at the Boston Marathon to watch her son race.  (He also runs for charity.)  I was so touched!  Isn’t it marvelous?

That's me!

Jane and Family:

We’ve had a wonderful summer so far.  The kids spent the month of July at Deer Lake, a nearby day camp which becomes like a second family to us every summer.   Then we just spent the past two weeks visiting Todd’s family in Canada.  They live in Winnipeg, Manitoba, but we spend nearly all our time at Todd’s parent’s cottage on the Lake of the Woods.

We arrived at Echo Bay on the Lake of the Woods late on a Saturday, but early enough to visit with Aunt Debbie and her son, Bobby, to meet our neighbor’s new baby (three-week old Mark!) and for a quick swim.

From this point on we lost track of the days!  They were filled with…

…Gorgeous Canadian weather.  Bright, breezy and warm days and cool nights.  An occasional summer storm passed quickly, and one left a beautiful rainbow behind.  Several hot and sunny days we spent entirely on the dock.  We only had a couple of overcast or rainy days in the whole two weeks we were at the Lake.  (And we needed these days for resting—we kept so busy!)

On the dock with Grandma

Grandpa in for a swim

Linda is like a member of our family!

Echo Bay rainbow

…Lots of critter encounters (including watching a dock spider, who we named Charlotte, hatch her egg sac), though none was quite as memorable as our meeting with the local snapping turtles.  Charlie is an enormous, pre-historic-looking creature we figure to be decades old who is often seen in our end of the Bay.  On the same day that Charlie came to visit our dock, our neighbors showed us the baby snapping turtle (who they dubbed Speedy) they had discovered in another part of the Lake.  They both caused quite a stir!

Alec with his catch, later released :)

Helen decorating her hair with crayfish

Jane holding Speedy, a baby snapping turtle

Todd with Speedy, too :) 

Charlie, Speedy's great-great-grandparent (maybe)

Kristy swimming with a friendly loon

…Visiting with loved ones is the best part of our visits to Canada.  We got to spend time with Todd’s family, particularly Grandma and Grandpa, who generously allowed us to invade their cottage for so many weeks!  We spent many afternoons visiting with friends nearby, and even boated to the island of friends who live in another part of the Lake.  The neighbors with whom Todd grew up now bring their own children to visit the Lake, so we have multiple generations of friends on each dock in our end of the bay.  All of the kids travelled together between docks, enjoying the special features of each one (slide at the Stewart’s, rope at the Rigby’s, diving board at the Fast’s…)

We took walks together along the Lake road when the weather was cool, and every night we had different combinations of friends and family with whom to play Bananagrams (an Echo Bay tradition in recent years).

…Plenty of training runs for me, many with my nephew, Bobby.  I managed to keep up with him even though I'm over 150% his age ;)

While I was running, Todd was staying fit on his bike.

…Swimming, swimming, and more swimming.  The kids were like fish, and were oblivious to temperature (or fatigue!)  Watching the Olympics in the second week of our trip only spurred them on further.  One day they arranged races between our dock and the neighbors (about 50 meters).  Helen and Alec competed in a 200-meter medley, in several freestyle races, and Jane even joined in for the 50-meter breaststroke.  I was exhausted just watching them!  Grandma treated them to hot chocolate and popcorn afterward <3

Incidentally, it was fun to watch the Olympics on the CBC, and to experience the games from the Canadian athletes’ perspectives.

…Diving (and other forms of plunging into the Lake), particularly from another neighbor’s springboard.  Here the kids branched out from Olympic standards to compete in categories such as Best Cannonball and Best Pencil-Dive.  We also learned of the perfect cliff from which to jump into the Lake.  Neighbors had previously investigated an area across the bay (and confirmed adequate depth of the water!) and had even left a rope for mounting the cliff.  We had lots of fun trying to synchronize our jumps for the camera.

The cliff was not far from a shallow reef, which the kids could explore with snorkels.

Cliff-jumping family

Synchronized jumping

Resting after snorkeling 

Jane!

…Paddling in the paddle boat, kayaks, and canoes (Grandma joined us in each of them!) around the island in the bay, along the shore, and into the marsh behind the cottages.

...Sailing!  Our dear friend, Linda, shared with us her small sailing trimarans.  In the usual sailing style, she took the kids for tandem sails and let Todd sail solo—but even more fun was Linda’s pirate version of trimaran tag!  Linda, Helen, Jane, and I (the No-Beards) boarded one boat while Alec and Todd (the Potential-Beards) boarded the other.  The object of the game was to hit the opposing team’s craft with one of two “cannonballs” (Nerf-type balls).  We sailed for hours, circling each other while the kids jumped into the Lake to retrieve lost cannonballs as they floated by, and then hauled themselves back onto the boats as they sailed past.  What fun!

Helen in a yoga pose while sailing

Jane enjoying the splash

...Boating.  No visit to the Lake of the Woods is complete without a boat ride (or two) to the Rockeries for ice cream and other treats.  This year Todd also started giving me (and Helen, and even Alec) boating lessons so that he isn’t the only one who knows how to drive the boat.  And for the first time in many, many years we took a boat ride all the way to Kenora—a ride of just under an hour.  Kenora is the largest “city” on the Lake of the Woods, with a population of 15,000.  We were tickled to pull up to the grocery store by boat!

Devil's Gap

Pulling into Safeway by boat

Huskie the Muskie, a famous Kenora landmark

Float plane parking

...Wake boarding, skiing, tubing.  Alec in particular caught the wake-boarding bug from his father, and was up behind the boat nearly every day.  Todd got in several runs on the board and on skis, and I even put in my annual requisite turn :)

Alec making it look easy

Jane and Alec on the tube

Todd getting air!

Kristy wakeboarding with a smile (or is it a grimace?)

NF Update:

Now that I’m back home (for work… Todd and the kids get to stay in Canada for another week!) it’s time for me to get back to fund raising for the Children’s Tumor Foundation.  My first fall race is the New Haven Half Marathon on Labor Day—only three weeks away!  Shortly thereafter in October is the Hartford Marathon—my TENTH marathon!!  If I can run ten marathons to help end NF, you can help by DONATING.  Here’s our fund-raising link:

www.KRath4Jane.com

I hope everyone's having a great summer!

<3

Running Update:

6/26/2016	9.0 mi	1:30:00
6/28/2016	3.2 mi	29:17
6/29/2016	5.0 mi	47:18
7/1/2016	5.0 mi	47:15
7/3/2016	9.1 mi	1:29:50
7/4/2016	4.1 mi	39:21

I don’t really have anything to say about running in this post, but feel I have to be faithful to the log :)

Jane Update:

This past week Jane took a class at our local art center.  The program focused on Pop Art by artists such as Haring, Warhol, and Lichtenstein.  Here is her self-portrait <3

NF Update:

Now that we’re on an every-six-month schedule at the NIH, I don’t have as many medical updates to provide; however, that doesn’t mean we ever stop thinking about NF.

A few days ago Jane was reading Pottermore, a website of writing by JK Rowling.  One feature on the site allows the reader to discover which magical house suits them by answering various questions, some simple (“What pet would you choose to bring to school?”) and some much deeper.  Jane was playing along when she was asked, “Think of the question would you most like answered by a person or an all-knowing being or device?  Which of the following most closely resembles the answer you’d like to hear?”  She could select from Magic-Eight-Ball-type responses such as “Yes” or “Never” or “Without a shadow of a doubt.”

She said, “I’d ask why I was born with a tumor.” 

It winded me for a moment.  I didn’t realize she had “Why me?” type of thoughts.   Despite the extra medical care she receives for NF, she (and our family) have never acted as though her condition was a burden.

She selected the answer, “I will show you everything.”

Later that day I asked her a bit more about what she wanted the answer to be.  It turns out that she was looking for a scientific answer, rather than an existential one!  (Much easier to address!) We talked a little bit about our genes and DNA, and how sometimes if a gene grows in an unusual way it can cause tumors.  She seemed satisfied with the answer.  

I've explained these things to her before, but I think she is old enough now to understand it better.

~~~

A few times a year Jane’s elementary school dedicates a day to a different charitable organization. Each of these days is associated with a fun activity for students, and the children are encouraged to donate a dollar to the featured charity.  For example, in the past couple of years the school has had Crazy Hair Day for Special Olympics, Crazy Hat Day for our local ambulance department, and Pajama Day for the Make a Wish Foundation.

Before the end of the past school year, the principal of Jane’s school contacted me to ask if Jane and our family would like to hold a fund-raising day next year for the Children’s Tumor Foundation, a group dedicated to improving the health and well-being of individuals and families affected by NF.  I asked Jane what she thought. 

She immediately said, “Sure!  That’d be great!” 

I asked her if having a school event dedicated to NF would make her feel self-conscious about having NF herself. 

She said, “I'm not the only one with NF in my school.”

I told her gently, “Actually, I think you are...”

She thought for a few moments, and then said, “Well, I'm the only one in the family with NF and I don't feel self-conscious about it, so why would I feel self-conscious at school?”

It’s moments like these that reassure me that Jane is going to be just fine, no matter what life throws at her <3