Running Update:

9/6/2017	Run		5.0 mi	48:52
9/8/2017	Run		3.2 mi	31:27
9/10/2017	Run		18.1 mi	3:08:08
9/12/2017	Swim		2000.0 m
9/13/2017	Run		7.6 mi	1:14:09
9/15/2017	Run		3.2 mi	31:17
9/16/2017	Swim		2100.0 m
9/17/2017	Run		5.0 mi	48:30
9/22/2017	Run		5.0 mi	47:24
9/23/2017	Swim		2000.0 m
9/24/2017	Run		16.0 mi	2:53:50

The Marine Corp Marathon is 4 weeks from today!  Two more weeks of regular training before I start to taper.  I had hoped to run 20 miles today, but I had to stop at 16 miles due to the conditions—it was 85 degrees and humid here.  Also, even though I run marathons to support the research for a cure to NF, traveling to NIH for said research protocols is not always compatible with training for a marathon!  I missed several workouts this week, but I’m hoping to make up for it before I start to taper.

As always, you can donate to our race here:  www.KRath4Jane.com

Jane Update:

Jane and I are back from another trip to the National Institutes of Health.  In the past we’ve often made our trips at the beginning of the week (arrive Sunday, testing on Monday and Tuesday, home Tuesday or Wednesday), but for various reasons this time we arrived mid-week and returned home late on Thursday.  We discovered a benefit of this schedule is that the clinical center is much less busy at the end of the week, so most of our appointments ran on time.  A disadvantage of an end-of-the-week visit is that we didn’t get all our test results until a few days after we got home.  (More on that later.)  The Children’s Inn was similarly empty, which gave us more space to relax, but there were also fewer kids for Jane to play with (and parents for me to socialize with).

Our main testing day was Thursday, and we followed our typical appointment schedule:

8:00am– Vital signs (3 hts, 3 wts) and labs, Pediatric Clinic, 1st floor

8:30am– Photography, Room 1N230, 1st floor

9:00am– EKG, Radiology, 1st floor (or anytime during free time)

9:30am– Eye exam Dr. Bishop, Out Patient Clinic, 10th Floor

                  Lunch Break

11:45am– Unsedated MRI (Face, sinus, ENT), Radiology 1st floor

1:00pm– Physical exam with Andrea, Pediatric Clinic, 1st floor

2:30pm– Family meeting, Pediatric Clinic

3:00pm– Echocardiogram, 5NE, 5th Floor

Photography is always my favorite appointment :)

At our family meeting our team was able to give us some initial results.  Visually, Jane’s tumor seemed to be stable, if not slightly smaller in the area of her tongue.  Our radiologist set several of Jane’s MRI images side-by-side for us to see.  Jane had the most dramatic reduction in the size of her tumor in her first year on selumetinib (the trial drug), but the radiologist thought there was still further improvement even in this past 5 months.  In order for you to understand the images, I’ve added some labels, and would like to explain the views.

The "coronal" view is a cross section of the head cutting it into front and back halves.  (Think of an imaginary plane that cuts through both shoulders.)  

The "axial" view is a cross section of the head cutting it into top and bottom halves.

In the images below: 

- The top row contains coronal views.  The top of the image is the top of Jane's head, the bottom is her chin.

- The bottom row contains axial views.  Imagine Jane is laying on her back.  Her teeth are at the top of the image, her spine at the bottom.

- The first column is of images from February 2014, prior to Jane starting selumetinib.

- The second column is of images from October 2016 (roughly one year ago).

- The third column is of images from this visit.

- In the first column, the red arrows point to tumor (bright white).

However, a few days after we got home our team emailed the quantitative results:

Based on these results, our care team is calling Jane’s tumor stable.  “Stable” is always good, though I confess since we increased Jane’s dose after her MRI in May, I was hoping to see at least a little additional reduction her the tumor volume.  Also, even though I know that “stable” means there was not statistically significant difference in the size of her tumor from last visit, I would rather see a slight dip in the plot rather than a slight rise.  Will wait until March for Jane’s next MRI.

NF Update:

Readers of this blog know that my kids and I are Harry Potter fanatics.  We learned today that the daughter of the actress who plays Hermione Granger in the play, Harry Potter and the Cursed Child in London also has NF1, like Jane.

Here’s the whole story: nfnetwork.org/pages-news/harry-potter-stars-daughter-diagnosed-with-nf1.

While I would never wish NF on anyone, it is always good to learn about others who understand about NF first hand.