Sunday, December 21, 2014

Running Update:
5.1 mi
5.0 mi
8.0 mi
7.5 mi
7.6 mi
5.0 mi
5.1 mi
7.6 mi

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.

Tuesday, December 2, 2014

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

Monday, December 1, 2014

Running Update:
7.5 mi
3.3 mi
5.0 mi
7.5 mi
5.0 mi
5.1 mi
7.6 mi
A belated Happy Thanksgiving to everyone!  We continued our tradition (for the 6th 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 2nd 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.