Friday, July 18, 2014

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!

Wednesday, July 16, 2014

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!

Tuesday, July 15, 2014

Running Update:
7/6  9.2 miles in 1:35:08
7/8  3.1 miles in 28:21
7/9  5.0 miles in 45:22
7/11  5.0 miles in 47:01
7/13  12.1 miles in 2:04:33
7/15  5.0 miles in 44:25
Just about at 100 miles per month now, and hope not to drop below that until October.

Jane Update:
Back at NIH tonight.  Had a rough time getting here with all the storms up and down the east coast, but arrived in one piece (if a little behind schedule).

Jane is a seasoned traveler now, of course.  As soon as we are seated on the plane she whips out the Aircraft and Safety Instructions brochure from her seat pocket.  She informs me as to where the closest exit is, if it’s in front or behind us; where the second closest exit is; and which exit to use for a water landing.  Then she checks to see if there are life vests under our seats.  Finally, she pulls out SkyMall and tells me all the things we should buy.

We’re at NIH for a longer than usual visit this time.  Tomorrow is our full day with physical exam, eye exam, EKG, anesthesia consult, and cardiac echo; then Thursday is Jane’s MRI.  Hoping for good news.

NF Update:
In my latest effort to spread the word about neurofibromatosis, I entered a contest to be featured on the cover of an upcoming Runner’s World magazine—not realizing I had to have people to vote for me!  (I thought the essays I entered would just be read by the editors.)  So, if you have a Facebook or Twitter account, I am asking you to vote!  Here is the link:

Helen Update (again):
It was a big week or so for Helen,  She got her ears pierced on the 5th, then braces on the 14th!  Ouch!

Friday, July 4, 2014

Running Update:
6/24  3.1 miles in 29:20
6/25  8.1 miles in 1:18:24
6/27  5.6 miles in 51:48
6/29  7.6 miles in 1:13:39
7/2  3.1 miles in 29:10
7/4  6.0 miles in 56:31
Happy Fourth of July, everyone!  I managed to get in a run today before the storm arrived.  So far following my training plan to the letter…

Jane Update:
We had a wonderful week in Cape Cod last week.  Took several family bike rides, and ended up at Ben and Jerry's ice cream shop after most of them :)

The Three Sisters lighthouses in Nauset (or as we called them, the "Two Sisters and a Brother" lighthouses).

We rode all the way from the bay side of Cape Cod to the ocean side!

Ocean side waves in Nauset


The last time we visited the Highland Lighthouse, Jane wasn't tall enough to climb it--she was this year!

NF Update:

Jane still tolerating her medication.  She and I return to NIH in a week and a half.  This time she will have a “restaging” MRI—the first MRI since starting AZD6244.  I am looking forward to (and fairly apprehensive about) learning what effect (if any) AZD6244 is having on Jane’s tumor.  

PS.  Don't forget to donate to our 2014 campaign!  Click HERE for the link :)