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!

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.

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.

Jane's and my lantern

Away they go!

Visiting the Forks in Winnipeg.  We're on the skating trail that winds through the park, over bridges, and down to the river.

Skating on the Red River.  Winnipeg boasts the longest naturally frozen skating trail in the world (8-1/2 kilometers!) 

Yes, there is a Zamboni on the river (far end).

Running Update:

12/3/2014	5.1 mi	46:38
12/5/2014	5.0 mi	45:43
12/7/2014	8.0 mi	1:15:58
12/10/2014	7.5 mi	1:14:19
12/14/2014	7.6 mi	1:11:37
12/17/2014	5.0 mi	47:35
12/19/2014	5.1 mi	45:40
12/21/2014	7.6 mi	1:16:13

Total for 2014:  1000.2 miles!  Yay!  I may still do a couple of short runs before we head to Canada for holiday celebrations, but I’ve reached my goal for the year. 

So now I can sing (with apologies to the Proclaimers):

But I would run five hundred miles and I would run five hundred more

Just to be the Mom who ran a thousand miles to find an NF Cure!

Jane/NF Update:

As you all know by now, we got good news again from our recent visit to NIH:  Jane’s tumor has decreased in volume another 8% since her last MRI in January!  That makes a total of 24% reduction since starting AZD6244.  Such a wonderful Christmas present!

A recap of Jane’s first nine months in this clinical trial:

10 cycles of experimental chemotherapy

16 blood draws

6 NIH visits

4 echocardiograms

4 dilated eye exams

4 EKGs

+             3 sedated MRIs

__________________________________________

24% reduction in tumor volume!!

Jane is now considered a “partial responder” to the medication.  Here is the official note:

May it continue in 2015!

Happy Holidays, everyone.

NIH update addendum:

In an unprecedented turn of events, we’re back home in Connecticut this evening!

Our whirlwind day:

We started the day at the NIH hospital at 6:45am when Jane had her IV placed and blood drawn.  She went in for her MRI at about 8:15am and had the easiest induction of anesthesia that she’s ever had—just closed her eyes and went to sleep.  She was back in the recovery room by 10:00am and all seemed smooth sailing. 

However, half an hour later her nurse came in to the room and started asking all sorts of questions:  Had Jane had a fever in the past few days?  A sore throat?  All questions we had answered “no” to several times since arriving at NIH.  I wondered aloud why she was asking us again, and that’s when I learned Jane’s white blood cell count—a measure of infection fighting—was 22, more than double the normal value.  Jane had had the sniffles for a few days beforehand, but otherwise all her exams yesterday were normal.  Despite this, an elevated white blood count qualified Jane as an infection risk, and we were told we could no longer stay at the Children’s Inn, and that we may be sent home! 

By 11am we were meeting with our clinical team.  The good news was that the preliminary reading of Jane’s MRI seems to show that her tumor is smaller again, though we won’t have the final results until next week.  (I want to be excited, but I’ve been misled by preliminary results enough in the past that I am reserving judgment until we have the final.)  The bad news was that the MRI scan showed that Jane had an active sinus infection!  She was to be started on oral antibiotics, but it was confirmed that we couldn’t stay at NIH for fear of affecting other patients...

…which is why an hour and a half later we were on the shuttle to BWI airport!  Poor Jane!  She had just woken up from anesthesia, had a sinus infection brewing, and was made to endure shuttle bus, airplane, and car ride.  She was in rough shape by the time we finally arrived home—there’s a reason you’re not supposed to travel for 24 hours after anesthesia!!

Now that Jane is safely and comfortably sound asleep in her own bed, I’m glad we’re home early.  But I don’t ever want to do that again!  I have always been impressed by Jane's tolerance for discomfort, but today she truly amazed me with her strength and endurance <3

Running Update:

11/16/2014	7.5 mi	1:08:37
11/19/2014	3.3 mi	29:01
11/21/2014	5.0 mi	45:38
11/23/2014	7.5 mi	1:11:07
11/26/2014	5.0 mi	48:06
11/27/2014	5.1 mi	41:12
11/29/2014	7.6 mi	1:11:40

A belated Happy Thanksgiving to everyone!  We continued our tradition (for the 6^th year) of starting the holiday with our dear friends, Neil and Marcia.  Each year they visit the day before Thanksgiving and our children help them prepare a pre-race meal.  Then on Thanksgiving Day we all attend the Madison Turkey Trot!

Chopping kale

Measuring the pasta

Cooking sweet potatoes

After the race it was off to Grandma’s house, where we shared Thanksgiving dinner with my Aunt Anne and my mother (and her fabulous desserts).

50 miles to go to reach 1000 for the year—yikes!

NF Update:

Jane and I are back in Bethesda at NIH for Jane’s 2^nd restaging.  We arrived yesterday and I was pleasantly surprised that the travel was relatively easy, despite it being the busiest air travel day of the year.

Today we spent 7 hours straight at the Clinical Center—we’re both pretty beat.  Our schedule today:

9am Vital signs and physical exam

10am Photos (to document her tumor’s appearance over time).  I took a few pics while the photographer worked :)

10:30am Eye exam.  I haaaaaaaaate the Eye Clinic (maybe more than Jane does)—having to hold still for so long while instruments take measurements of Jane’s optic nerve and retina;  and waiting, waiting, waiting in between each test.  We spent 2-1/2 hours there today.  Ugh.

1:15pm Pre-op clinic to meet the anesthesiologist who will take care of Jane during her sedated MRI tomorrow.

2:30pm EKG

3pm Echocardiogram

As we were leaving the clinical center after our last test, we noticed a display of gingerbread houses.  Apparently the NIH Clinical Center has a contest every year to see which department can build the best gingerbread house.  They were amazing!  There were several Frozen recreations, and even a scene of a gingerbread man having a CT scan (entered by the Radiology Dept).  Some of our favorites:

Macy's Thanksgiving day parade, in gingerbread

Lace-like frosting detail

"Anatomy of the Gingerbread Man"

Candyland reproduction

This was the show stopper.  Every few seconds a gumball would drop out of the clock tower, roll down the red candy chute, through the house, and land in the box at the front.

Jane held up remarkably well for such a busy day, but she finally crashed at dinner time.  We ate dinner in our room and turned out the lights early.  We had to skip the activities generously offered by the Inn:

--a Holiday Gift Shop, in which each child may “shop” for presents for their family members.  Each child may pick (and then are given) a certain number of gifts which they may then wrap themselves to give to their loved ones.

--Peppermint Bark making!

This trip has been made wonderfully more tolerable by spending time with another NF family at the Inn.  Jaden is 12 and has NF1 just like Jane, with a worrisome plexiform neurofibroma just like Jane.  He is in the same AZD6244 study, and started the trial the same week that Jane started!  As a result, we have often overlapped at NIH during our follow up visits, but this is the first time our trips coincided completely.  Jaden is having the exact same tests on the exact same days, and we bumped into him several times at the clinical center throughout the day today.  Jane is thrilled to have a playmate, but even better, a playmate who is going through exactly what she is going through.

It has been good for me, too, being able to talk face-to-face with another NF parent with a child experiencing similar trials.  It has given me courage and strength.  (Thank you, Pat!)

Hoping for a restful night because we have to be back at the hospital at 6:30 tomorrow morning for Jane’s MRI.  One unfortunate piece of news—the radiologist who usually interprets all of Jane’s scans is away, so we won’t know precisely how much Jane’s tumor has changed until she returns and is able to study the data :(

Jane Update:

On an unrelated note:  Jane finally lost her first tooth!  The tooth fairy did come, and left a glittery dollar bills (hat tip to another NF Mom, who mentioned that the Tooth Fairy does this for a first tooth in her household :)

The following day we discovered that Jane has another wiggly tooth!  When it rains, it pours.