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:
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
