CANADA!

Jane and Family Update:

We finally made it to Canada!

After more than 18 months, the border with Canada was opened to the US on August 9th, so at long last we were able to visit Todd’s family!  We faced a number of crazy obstacles trying to get there and back.  Flights into Canada were scarce and astronomically priced, so we instead flew to International Falls, Minnesota and drove across the border.  Three days before our trip the Canadian Border Guards went on strike, threatening to hold up our crossing (they settled the day before we arrived).  Then we had to avoid the forest fires burning along our drive route through Ontario (we saw smoke but were well away from any active fires).  And we had to delay our return home by a day because of a hurricane making landfall in Connecticut (the hurricane was coincidentally named Henri—the same as our dog)!  All worth it, of course :)

Don't let his smile fool you--Henri did NOT like his travel bag.

"Icebox of the Nation"!

Henri saying goodbye to the US

THE LAKE!

Group shot on the dock

Todd on a bike ride with our dear friend, Linda

Grandma agreed Henri is a very Good Boy

Random find: someone made a little dinosaur diorama beside the lake road :)

Helen and Alec joined us a week late (both had to work).  They walked across the border!

Todd's sister, Debbie, liked Henri, too

We discovered a new trail to a hidden lake (though clearly someone had found it before we did). 

Post-hike selfie

Bear in the backyard!!
(Picture taken from the relative safety of the living room.)

Jane catching crayfish

Henri loved the motor boat!

International Falls, MN is home to the largest Smokey the Bear statue (26 feet!)
We couldn't not take a picture :)

  

Running Update:

week of 7/19/2021	16.8 mi	2:49:07
week of 7/26/2021	22.7 mi	3:45:36
week of 8/2/2021	16.2 mi	2:43:46
week of 8/9/2021	27.1 mi	4:27:09
week of 8/16/2021	27.8 mi	4:35:55

I got lots of running (and swimming) in while we were in Canada, so I should be ready for the New Haven Road Race half marathon on Labor Day.  Alec will be running the 5K with his cross country team that day—it will be the first time we’re running in the NHRR together.  I’ll be wearing my Children’s Tumor Foundation shirt as usual, because I never stop fund-raising to #endNF!  You can donate here:

www.KRath4Jane.com

NIH August 2021

 

Update: NIH August 2021

This week Jane and I flew down to Bethesda for a quick check-up—her first visit to NIH since her surgery this spring, and our first time back on an airplane since the pandemic started!  We had been apprehensive as to how we would find the airport, but it seemed remarkably unchanged since pre-COVID times (for better or for worse) except that everyone was wearing masks.

Our schedule at the NIH Clinical Center wasn’t as jam-packed as it has on some occasions.  One reason is that Jane no longer has to have eye exams every 6 months—she’s graduated to once a year because, thankfully, selumetinib hasn’t had the negative ocular side effects that had been a potential concern when the trial started.  Our team also wanted to wait until next year to repeat Jane’s full-body MRI, so she got away with just her usual facial/ear-nose-throat MRI.

Sadly, we had no Fauci Sightings during this visit, but our nurse practitioner had a surprise for me—a pair of Dr Fauci socks!  I had given her a Dr Fauci face mask back in the spring at the time of Jane’s surgery.  She said she saw the socks at a local shop and just had to get them for me :)  I’ll wear them with pride!

Jane went through all the appointments like a champ, as usual, including extra, unexpected blood work the second morning to double check a result.  Despite this being a quick and (relatively) easy trip, I can’t pretend it doesn’t wear on us.  Jane is getting to an age where she is beginning to understand the implications of a life-long, complicated medical condition.  And despite the successes with selumetinib, Jane is facing at least another 5 years on this medication—a medication that causes side effects significant enough to require other medications to counter-act them, and even then the side effects are persistent and not trivial.

I will end on a positive note, however.  We received the results of Jane’s MRI before we left NIH.  Her plexiform neurofibroma looks stable!  We’ll carry on with her current regimen until our next visit to NIH in January 2022.