Running Update:
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9/6/2017
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Run
|
|
5.0 mi
|
48:52
|
|
9/8/2017
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Run
|
|
3.2 mi
|
31:27
|
|
9/10/2017
|
Run
|
|
18.1 mi
|
3:08:08
|
|
9/12/2017
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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
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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
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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.
