Running Update:

I finished the #EndNFChallenge and am happy to report I beat my 2500 minute goal and, with your help, we surpassed our fund-raising goal!

Week 7 (10/13–10/19) = 5:31:22 = 331 minutes

10/13/2020	Swim		1500.0 yd	40:00
10/14/2020	Run		7.6 mi	1:15:24
10/16/2020	Swim		1500.0 yd	40:00
10/17/2020	Run		13.1 mi	2:08:23
10/19/2020	Run		5.0 mi	47:35

Week 8 (10/20-10/26) = 4:41:21 = 281 minutes

10/20/2020	Swim		1200.0 yd	31:00
10/21/2020	Run		5.0 mi	48:19
10/23/2020	Swim		2100.0 yd	55:00
10/25/2020	Run		10.0 mi	1:39:22
10/26/2020	Run		5.0 mi	47:40

Week 9 (10/27-11/2) = 4:17:08 = 257 minutes

10/27/2020	Swim		1200.0 yd	31:00
10/28/2020	Run		7.5 mi	1:13:29
10/31/2020	Run		6.3 mi	1:00:06
11/1/2020	Swim		1750.0 yd	45:00
11/2/2020	Run		5.2 mi	47:33

Week 10 (11/3-11/9) = 3:50:21 = 230 minutes

11/3/2020	Run		5.0 mi	47:54
11/4/2020	Swim		1500.0 yd	40:00
11/6/2020	Swim		1750.0 yd	45:00
11/7/2020	Run		5.0 mi	47:27
11/8/2020	Swim		2000.0 yd	50:00

Week 11 (11/10-11/15) = 3:47:42 = 228 minutes

11/10/2020	Swim		1200.0 yd	31:00	45:29
11/11/2020	Run		7.3 mi	1:13:22	10:04
11/13/2020	Run		5.0 mi	48:05	9:41
11/15/2020	Run		7.6 mi	1:15:15	9:54

Week 12 (11/16-11/22) Bonus Week! = 4:14:34 = 255 minutes

11/16/2020	Run		3.3 mi	30:47
11/18/2020	Run		7.6 mi	1:14:12
11/20/2020	Run		5.0 mi	47:13
11/22/2020	Run		10.3 mi	1:42:22

In 12 weeks I ran and swam 3330 minutes total!  Not only that, but so far this year we raised $17,282 for the Children’s Tumor Foundation.  Thank you for helping us to #EndNF, everyone!

You can always still donate here: www.KRath4Jane.com

 

Jane Update:

Jane’s soccer team ended their season second in their league.  Everyone was sad for the season to end—the team was fun group of girls with a dedicated set of coaches.  Basketball is next for Jane but the start of the season has been postponed until at least January 19 (if it happens at all) due to the pandemic.

Meanwhile, we are in the middle of the month of Jane’s restaging appointments for her clinical trial with selumetinib.  Two weeks ago we were thrown for a loop when we got a call from Jane's principal that Jane was exposed to a classmate with COVID and therefore had to quarantine for 14 days!  That meant no in-person school and no doctor’s appointments, which had to be postponed and rescheduled—no small feat.  I was a wreck but Jane took it in stride; in fact, she was pretty tickled.  She was pleased she didn’t have to get up so early to get to school, she got to have her own bathroom, and she quickly pointed out that she couldn’t do chores around the house like empty the dishwasher or set the table.  Her best friend even dropped off a special goodie bag to keep her spirits up.

The hardest part was no hugs from the family.  We had one exception—at bedtime Jane and I would both hold our breath and I made a dash into her bedroom to give her a kiss goodnight <3

I’m happy to say Jane and the rest of us have remained healthy and tomorrow marks the end of her quarantine.  We’ve rescheduled her missed appointments (we still have Jane’s pediatrician, blood work, and ophthalmology appointment to go) and managed to have a video visit with Jane’s dermatologist.  The rash that forced Jane off of selumetinib over the summer has frustratingly returned.  We’re trying a new approach with intermittent topical steroids and a higher dose of doxycycline.  Hopefully that will give her some relief.

We’re still waiting on NIH’s interpretation of her abdominal and head/neck MRIs done the first week in November.  The radiologist at Yale reported minimal growth of her abdominal tumor and slight increase in two areas of her facial tumor, but no other changes.  Once NIH reviews the scans they’ll let us know what the plan is going forward.

 

NF Update:

Jane has been featured in a couple of Children’s Tumor Foundation productions recently.  First was the pre-show to the CTFHalloween Bash fund-raising event (CTF.org/Halloween).  You can see “Jane’s Selumetinib Success Story” starting at the 11:20 mark.

Next came the 2020 NF Gala, this year titled A National Celebration Concert to End NF, featuring Emmylou Harris (CTF.org/celebrate).  It included a flashback to the 2017 NF Gala at which Jane and her friend Phillip spoke (starting at the 12:15 mark) and the Make NF Video featuring Jane (starting at the 39:40 mark).

You’ll notice I’ve added a new feature on this site: the “Jane in the Media” column to the right.  There you can see all of the NF advocacy in which Jane has participated :)

 

Big Sib Update:

Jane’s big brother, Alec, is a high school junior and was proud to receive his varsity letter for Cross Country this season.

Helen will be home from Mount Holyoke College for Thanksgiving and will then finish the semester remotely from home, so we’ll all be together for the holidays <3

Happy Thanksgiving, everyone!

Jane, Henri, Todd and I on a recent hike