Sunday, July 31, 2022

NIH Update

Running Update:

July 2022            Run       121.2 mi             20:57:59

                            Swim        8.2 mi               6:17:00

It’s been tricky trying to get in all my training, particularly the long runs, with the heat and humidity we’ve had this month.  Swimming is a pleasant form of cross training when it’s too hot outside to run! 

It’s hard to believe there is just over a month until the Labor Day New Haven Road Race, my first event of the fall.  Watch for my fund-raising letters to arrive soon!  :)  You can always donate to our Children’s Tumor Foundation campaign here:

www.KRath4Jane.com

 

NIH Update:

Jane and I traveled to the National Institutes of Health in Bethesda earlier this month for Jane’s semi-annual check-up.  Our last trip to NIH in January 2022 was canceled due to the Omicron variant wave, so this was the first time we were back in Bethesda in almost a year.

Jane’s physical exam, labs, and heart testing were all relatively normal.  She had two separate MRIs: a detailed one of her face and sinuses, and a slightly less detailed one of the rest of her body (a “whole-body MRI”).



As you can see, the facial MRI showed a possible slight increase in her main right-sided tumor; however, some of the change could be technical.  The MRI did not cover the entire tumor because of the way the scan was set up, and this made it difficult for our team to measure the exact volume of the tumor.  Our team recommends continuing the MEK inhibitor and measuring the tumor volume again in December at our next check-up.

The whole body MRI confirmed that there is no regrowth of the nodular lesion by Jane’s left kidney that she had removed in March 2021.  There is a small new neurofibroma near that area.  It’s possible this may have been there previously and was obscured by tumor that was removed.  Regardless, our team wants to repeat the Whole Body MRI also in December to check on it again.

Finally, our team recommended that Jane see neurologist regularly at home for better management of her migraines, which are in part due to NF and in part hereditary (I get them, too!) and which have been worsening lately.  Once back in Connecticut we met with Dr Laura Ment, a lovely and very knowledgeable pediatric neurologist who helped us make a plan for mitigating the migraines.  She also requested a brain MRI to make sure there are no other factors contributing to the headaches.  Despite the name, a ‘whole body” MRI does not include a detailed look at the brain, so Dr Ment asked for a detailed brain MRI to be added to other MRIs Jane will have at NIH in December.  I’ve lost count of how many MRIs Jane has had in her lifetime, but it’s well over two dozen :/

 

Jane and Family Update:

We’ll be escaping the heat and heading to visit Todd’s family in Canada in August.  Todd and Henri will arrive first, followed by Jane and me a week later, and then by Helen and Alec a week after that.  It will be a good way to end the summer <3

Tuesday, June 28, 2022

End-of-School Update

 

Running Update:

Month of June 2022:      76.5 mi   12:43:18.

I took a longer than usual break after the Providence Marathon (due to a non-running injury) but started running again June 1.  And as of last week I’m officially in marathon training again, this time for the Chicago Marathon!  I’ll be running with the Children’s Tumor Foundation NF Endurance Team (of course).  It had never been my goal to hit all six World Marathon Majors (Tokyo, Boston, London, Berlin, Chicago, and New York) but by running Chicago I’ll have done half of them.  Maybe I’ll look for a race abroad next year…?

But for fall 2022, here is our schedule:

New Haven Road Race Half Marathon—Monday, September 5

Chicago Marathon--Sunday, October 9

Philadelphia Half Marathon—Saturday, November 19

You can always donate to our NF Endurance campaign here:

www.KRath4Jane.com

 

NF Update

Tomorrow we return to the National Institutes of Health for Jane’s semi-annual check-up and MRI.  Readers of this blog will recall that our trip in January was canceled due to the Omicron COVID surge and we had to do all our testing at home, so this will be our first time back to Bethesda since last August.  It will also be Jane’s first MRI since then, and her first full-body MRI since we discovered the now-removed neurofibroma on her kidney in 2019.  We’re hoping for no new discoveries.

On a related note: this is the medication diary Jane has to keep for NIH. A “cycle” of chemotherapy is four weeks.  In the month of June, Jane completed Cycle 100 of selumetinib. (She started this trial in March 2014.) A bittersweet milestone.




 

Jane and Family Update

Another school year done!  Jane finished her first year of high school with High Honors, and with a special Underclassmen Award in History.  Such a superstar <3




After a successful sophomore year at Mount Holyoke, Helen arrived home in May.  Shortly thereafter she had her wisdom teeth removed as scheduled, but less than a week into her recovery she came down with COVID!  (After avoiding it for over two years!)  Not a fun way to start the summer.  Thankfully, she bounced back quickly and is enjoying her break—and we are very much enjoying having her around <3

Alec graduated high school!  His last week of school was filled with lots of fun activities, including the his final Track Banquet and the Senior Prom.  We are so proud of him and are excited to see what wonderful things he does at Lafayette College.


All the seniors on the Track and Field team were given sweatshirts from their intended college!

With Mom and Dad, ready for Senior Prom



And graduation!






Helen hand-painted the Lafayette logo on Alec's mortarboard <3







Monday, May 2, 2022

The Providence Marathon (with bonus pictures)

 

Running Update:

Yesterday I ran the Providence Marathon!  It was marathon number 18 for me.



The race starts and ends at the Rhode Island State Capitol

Heading to the starting line

Off we go!  I'm to the right of the photo in my usual CTF blue

Crossing the finish line

Got my medal!



Last night when I was back home with my feet up, still wearing my medal and awaiting our family’s standard post-marathon dinner (Indian take-out), I compiled my review of the Providence Marathon.


PROS:

1  Providence itself is a pretty little city--I hadn't ever really toured the area properly before.

2  It’s a nice sized marathon, not too big and not too small.  About 1200 people ran the marathon, in two waves.  There was a half marathon and a 5K race that morning as well.

3  The whole event was well organized and the course was well marked.

4  There were tons of port-a-potties!!  Those who have run any kind of road race can tell you, this is key.  A half hour before the race start there were still no lines!

5  Perfect weather--sunny and breezy, 40s at the start, 60s by the end.  (Well, maybe I would have liked it a tiny bit cooler...)

6  Most of the course was shaded, and the second half was very scenic along the waterfront of the Providence River or on the wooded East Bay bike path.

7  Nice swag--instead of a typical race t-shirt we got running jackets that seem a fairly good quality.


CONS:

1  The course is advertised as fast and flat.  I’m here to tell you that "flat" perhaps describes miles 8 through 20.  However, the beginning and the end had significant hills--enough to zap your energy at the start and then dishearten you before the finish :(

2  We ran down stairs at mile 24 (!) in a park near the city center.  At this point in any marathon, your thigh muscles are in no condition to navigate stairs.  The fellow running next to me cried out in dismay, "They put stairs in a marathon??"

3  Not as many spectators as some races (if you like that sort of thing--I do).

All in all, I would recommend it.  I’m keeping it on my list of possible races for 2023!

 

NF Update:

Thanks to all our wonderful donors, so far this year we’ve already raised $10,169 for the Children’s Tumor Foundation.  What a great way to start off NF Awareness Month in the month of May! 

I’ll inject a little NF awareness into this post by sharing my perennial favorite explainer from the Childhood Tumour Trust:


And here are more info and activities for NF Awareness Month from the Children’s Tumor Foundation (including photos and videos of Jane):

 

 

Jane and Family Update:

Two weeks ago Todd, Alec, Jane and I spent a week touring some of the National Parks of the American Southwest.  What a treat!  We hadn't traveled anywhere except Canada since the pandemic started.  The kids had a week off from school and I found some inexpensive last-minute flights to Las Vegas.  From Vegas we drove to the Hoover Dam, then on to the Grand Canyon for two days.  Then we drove on to Utah and visited Bryce Canyon and Zion National Park for three more days.  On our way back to Vegas we passed by Cedar Breaks National Monument and stopped at the Valley of Fire. 


Outside the Bellagio

Alec and I viewing the Cesar's Palace opulence
 
Overlooking the Hoover Dam


First day at the Grand Canyon!

Ooh Aah Point :)



Bryce Canyon (and our favorite stop of the trip)

Jane and me hiking "Wall Street" on the Navaho Trail


On to Zion National Park



The road to Cedar Breaks was closed due to snow!

An unexpected gem, the Valley of Fire

2000 year old petroglyphs!


Alec Update:

We’ll have another college student soon!  Alec committed to Lafayette College in Easton, PA.  He is thrilled and we couldn’t be more proud!  Cur Non?  #RollPards <3



Sunday, April 10, 2022

The Cheshire Half Marathon

 

Running Update:  the Cheshire Half Marathon

My first race of the season is done, and it felt great.  Yay!  The conditions were perfect: temps in the 40s, partly cloudy, and dry.  The race course is beautiful, half of it along the Farmington Canal Trail and relatively flat.  I ran my best time since the Philly Half before the pandemic!  Early in the race I noticed two fellow runners keeping pace with me.  We urged each other on for most of the race and finished within a couple minutes of each other.  We shook hands and thanked each other at the end.  (Runners are such cool people.)

Pre-race gear check

Henri helping me get ready

At the start

Crossing the finish line

Thanks to Todd, the best race supporter!

I love the flower theme on this year's medal!

The only bad news: I had a shoe mishap a couple of days before the race and ended up having to run last minute with an old pair of insoles.  The perfect recipe for blisters :(

Next up: the Providence Marathon three weeks from today.

 


NF Update:

Our year-to-date funds raised for the Children’s Tumor Foundation: $7383!  THANK YOU all for supporting us!  Every dollar gets us closer to a cure for NF.  If you would like to donate you can do so at

www.KRath4Jane.com

Jane’s and my next trip to NIH is scheduled for the end of June.  We’re hoping to get there for real this time.

 


Jane Update:

Jane had a birthday this month—she’s FIFTEEN!  I just can’t.  She got together with some friends that afternoon, then we had cake and presents as a family that evening.  My reason for running <3

Opening presents

Henri socks!

Birthday fun with buds