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.