Running Update:

8/27/2014	6.0 mi	57:47
8/29/2014	5.0 mi	44:48
9/1/2014	12.6 mi	2:06:41
9/3/2014	8.0 mi	1:16:52
9/5/2014	3.2 mi	29:56
9/6/2014	10.9 mi	1:51:41
9/7/2014	5.0 mi	45:34

Hot and humid—ugh!  Usually the beauty of training for a fall marathon is that the weather becomes more and more compatible with running as you get into the most intense part of your training.  Not this past week!  I was spoiled by such a cool, dry summer—I’m not acclimated to running in heat and humidity this year!

Done with our first race of the fall:  the New Haven Road Race on Labor Day:

At the start

Nearing the finish

Crossing the finish line
(An illustration of how, when I run long distances, I keep my left index finger pointed.  I don't know why...)

Once the NHRR was over I started breaking in a new pair of running shoes!  Each pair lasts about 500 miles.  I figure I’ll be able to get at least 100 miles on this pair before the Hartford Marathon on October 11th.

But before the marathon, I’ll be attending a new (for me) kind of NF event:  the 2^nd annual NF Walk in Putnam, CT!  The whole thing is organized by the head of the Connecticut Chapter of the Children’s Tumor Foundation, Rhianna Curotto.  It will be the first NF event that we are participating in as a family—even the kids will walk!  I am looking forward to meeting more Connecticut families affected by NF.  Here is the website for more information:  www.nfwalk.org/putnam

Jane Update:

Back to School!  The first few days of school have gone well.  Everyone seems to like their teachers and their classes.  We’re looking forward to a great school year.

NF Update:

Since being back at school Jane has received a number of compliments on her new haircut.  We had to cut her hair short because the AZD6244 has caused it to thin considerably, but the pixie cut seems to suit her.  Another curious effect of the medicine is that it is making her hair grow blonde!  You can actually see the first stripe of blonde hair that started back in March when she began taking AZD6244.  While blonde hair certainly isn’t a bad side effect, it does freak me out a bit that Jane is taking a medicine powerful enough to change her hair color :(

Finally, don’t forget to donate to our 2014 campaign for the Children’s Tumor Foundation!  If you can’t remember if you’ve donated yet this year, ASSUME YOU HAVE NOT, and donate again :)

Here’s the link:  http://ctf.kintera.org/nfechooseyourownevent2014/krath4jane

It’s been over a month since my last update!  We’ve had a wonderful summer—can’t believe it’s Back to School next week.  We’ve just returned from a blissful two weeks in the Canadian wilderness visiting Grandma and Grandpa.  I’ve posted lots of pictures below from our lovely visit to the Lake of the Woods in northern Ontario.

Running Update:

7/19/2014		10.0 mi	1:43:48
7/22/2014		3.1 mi	28:41
7/23/2014		5.4 mi	52:33
7/25/2014		7.6 mi	1:11:01
7/27/2014		14.0 mi	2:16:24
7/29/2014		3.2 mi	27:27
7/30/2014		7.6 mi	1:12:38
8/3/2014		9.9 mi	1:36:40
8/5/2014		4.0 mi	38:22
8/6/2014		5.7 mi	56:17
8/8/2014		8.2 mi	1:20:32
8/10/2014		16.0 mi	2:52:16
8/12/2014		6.0 mi	59:49
8/14/2014		4.0 mi	43:33
8/16/2014		10.1 mi	1:45:09
8/20/2014		7.2 mi	1:08:06
8/22/2014		3.2 mi	28:47
8/23/2014		18.2 mi	3:02:23
8/24/2014		5.0 mi	47:09

Total for July:  105.4 miles

Total (to date) for August:  97.6 miles!

Marathon training is in full swing.  My first race of the season is a week from tomorrow—the 20K New Haven Road Race on Labor Day.

Jane and Family Update:

Pictures from Echo Bay…

Face painting by big sister Helen

Visiting with our good friend Linda and her daughter

Bedtime stories with Grandma

Three generations of Robert Constable

Selfie!

Windblown Helen on the boat

Friends for four-plus decades!

Contemplative paddler

Catching crayfish

Helen and Grandma

Bathing beauty Helen

The Lake was higher than anyone can remember.  Our dock was several inches underwater.

Sailing with Linda

Mother and son

Grandpa still paddles around the island at 85!

Taking a break from snorkeling on Linda's boat

Canoe view

Picking wild blueberries!

A ride in the back of Grandpa's truck

Our haul

Spent a day canoeing with Linda and her daughter.  We portaged to the next lake and had a picnic and a swim.

Jane and Linda on the boat

Grandma's homemade pie, with the wild blueberries we picked

NF Update:

Our fundraising campaign is also in full swing!  Thank you to all who have already donated this year.  If you haven’t yet, here’s the link:  http://ctf.kintera.org/nfechooseyourownevent2014/krath4jane

I feel like I have already told everyone in the world about this, but wanted to post it to the blog just to make it official.  We got the results to Jane's MRI last night:  her tumor is 16% smaller since starting AZD6244!
The following graph says it all--pay particular attention to the light green segment of the line!

This graph shows Jane's tumor (plexiform neurofibroma, or PN) volume over time, and the effect of the various medications she has taken.

I am on cloud nine!
We are going to continue Jane's reduced dose for now given that she seems to be responding to it, and she has been tolerating this dose very well.  We will have the option to increase the dose later if necessary.  We will return to NIH in the fall for a check-up of her eyes and heart, but won't have another MRI until early December.  I plan to enjoy this moment for a while--it's been a long time since we've had good news!

Our day at the NIH Clinical Center, in pictures.

Headed to the hospital bright and early.  Our little fashionista brought her sunglasses in preparation for having her eyes dilated.

After a physical exam, eye exam, and EKG, we took a break in the play room.  Here at the sand box.

After lunch, a photo shoot!  Jane periodically has pictures taken at the hospital to document the appearance of her tumor.  I took some candids while the photographer did her work.

Next was Anesthesia/Pre-op Clinic.  Jane will be sedated for her MRI tomorrow.  Here reading Ivy and Bean.

After her final appointment (an echocardiogram) we headed back to the Children's Inn, where we watched (and participated in!) a play by Only Make Believe.

Can you believe this smile?  After all day at the hospital, she's still having fun!