Running Update:

9/11/2018	Run		3.2 mi	31:36
9/12/2018	Run		7.6 mi	1:16:50
9/14/2018	Run		5.0 mi	47:40
9/15/2018	Swim		1600.0 yd
9/16/2018	Run		10.2 mi	1:46:14
9/18/2018	Run		3.2 mi	30:41
9/19/2018	Run		7.6 mi	1:15:44
9/21/2018	Run		5.0 mi	47:58
9/23/2018	Run		20.5 mi	3:30:47
9/26/2018	Run		3.1 mi	30:35
9/28/2018	Run		5.0 mi	48:56

Less than a month until the Marine Corps Marathon!  I have one more 20+ mile run to go next weekend before I start to taper.  Yay!  As always, you can donate to our campaign here:

www.KRath4Jane.com

NF Update:

This week we finally received the final results of Jane’s MRI from our visit to NIH earlier this month. Unfortunately, her tumor volume showed a little uptick, as you can see in the plot above.  Dr Widemann called it a “very minimal increase by numbers, which is within error of measurement.”  That said, she went on to say, “I think we made the right decision increasing the selumetinib dose.”  I do, too.

For background:  Jane’s dose of selumetinib is based on body surface area, or BSA, a combination of height and weight measured in square meters.  Her height and weight are measured every 6 months at our NIH visits and her dose is adjusted accordingly.  The full dose of selumetinib for Jane would be 50mg/m2/day.  However, ever since Jane had a skin reaction to selumetinib shortly after she started the medication four years ago, she has been on 30% less than a full dose (as was required by the study protocol).  That means her target dose right now is about 35mg/m2/day, which translates to 30mg twice a day, what Jane has been taking since our visit to NIH 3 weeks ago. 

Given that Jane herself is growing so fast, and that it now looks like her tumor is growing again, too, I was nervous about waiting a whole six months to recalculate and/or increase her dose again.  Thankfully, Dr Widemann agrees: “I think it would be absolutely fine to check the BSA again in 3 months at home, especially as JC is undergoing so much change right now. We could then dose adjust depending on BSA.” 

So, we’ll continue 30mg twice a day until the beginning of December and see how much taller Jane is at that point.  I’ll admit, I’m not thrilled to see the increase in Jane’s tumor, however slight, but will try to remember that it does not necessarily mean this will continue.

9/11/18

We made it to NIH on Sunday after a delayed and turbulent flight.  It seems the DC area is getting some of the wind and rain ahead of Hurricane Florence.  We’re glad we’ll be leaving before it arrives!

We were lucky to get a room at the Children’s Inn this visit because a large part of the building is shut down!  It seems they found some structural damage to the roof in the main part of the Inn a couple of weeks ago, so they can’t allow people to stay in that section until it is repaired.  They said it may take several months until they are up and running normally again.  The staff at the Children’s Inn works very hard and always bends over backwards to take care of families visiting NIH, but even more so now that they are in a construction zone.  If you’d like to read more about the emergency repairs at Children’s Inn, or make a donation to the Inn, look here: https://childrensinn.org/emergency/

Our poor Children's Inn at NIH!

Nevertheless, we were well fed! Homemade tacos and burritos Sunday night and an indoor picnic with hot dogs and pulled pork sandwiches on Monday.   I heard a woman in line for dinner say, “I could gain ten pounds here!” I felt the same way. It’s so nice to have someone cook dinner for you when you’re preoccupied with appointments and tests and medicines.

We had a full day of testing on Monday, starting at 7am.  

Jane did very well during her MRI, holding very still.  I think she may have even fallen asleep briefly during it!  After the MRI we had a quick coffee/chocolate milk break before continuing with our day :)

We started the afternoon at Photography (to document the outward appearance of Jane’s tumor) and managed to snap this picture.  (I won’t share the dozen or so less-than-cooperative shots it took to get this one good one!)

Despite growing another 4cm in the past 6 months,
Jane still relies on her trusty Puppy to get her through the visit.

We don’t have official volumes yet, but visually Dr Widemann (our pediatric neuro-oncologist) and Dombi (her radiologist) are calling Jane’s tumor stable, including the little superficial nodule on the right lower side of her face.  The plan at our last visit in March 2018 had been to increase Jane’s dose of study drug gradually to a total of 30mg twice daily in an effort to keep up with her overall growth, and for now we will be keeping to that plan.  Jane’s target dose of selumetinib is 39mg/m2/day (the dose is based on body surface area, or BSA, a combination of height and weight measured in square meters), so taking 30mg twice a day would come out to be 36mg/m2/day for Jane—close enough to target for now.

We arrived at Reagan National Airport for our flight home 2 hours early today.  I’m inexplicably weepy this morning (well, maybe not inexplicably since I’m tired and we’ve had a stressful couple of days), but it’s not helped now by being in an airport on Tuesday, September 11th at 8:46am.  There are memorial services occurring all over the airport—color guards and national anthems and moments of silence.  It’s hard to believe it’s been 17 years.

Running Update:

9/3/2018	Run		13.1 mi	2:26:55
9/5/2018	Run		5.0 mi	48:44
9/8/2018	Run		17.6 mi	2:59:09

Another New Haven Road Race done for the Children’s Tumor Foundation.  As anticipated, it was miserably hot and humid, but I finished!  Elite runner Sara Hall, who was the overall female winner of the 20K race, even commented in the NewHaven Register, “This was probably the most brutal conditions I’ve ever run in.”  (So it wasn’t just me complaining!)

At the start

Here I come!

Nearing the finish

I love this picture <3

Angela from the NF Endurance Team came all the way up from New York to cheer us on!

High fives for more NF team members

Now it’s time to focus on the Marine Corps Marathon, coming up October 28.  Hopefully it will be lots cooler by then!

Jane (and siblings) Update:

Jane, Alec, and Helen all started back to school this week, and everyone seems to be settling in with their new classes.  Here are everyone’s obligatory first day of school pictures :)

11th grader!

High School freshman!

Our 6th grade NF Hero

Waiting for the bus

NF Update:

Jane and I head back to NIH tomorrow—think shrink!  I’ll post results as soon as we learn them.

Meanwhile, I thought I’d introduce you to a campaign being run by the Childhood Tumour Trust, which is the UK’s analog to the Children’s Tumor Foundation in the US.  For Childhood Cancer Awareness Month in September, they are posting stories about children with NF with the hashtag #BenignIsNotFine.  Their point is that a benign tumor due to neurofibromatosis can be just as devastating as cancer and it’s not just malignant tumors that are treated by chemotherapy.  Check it out.