December news

Running Update:
2023 to date:
Swim     59.1 mi               39:08:07
Run       1120.5 mi*         182:41:16

 

*although the last third of the year most of my “running” has been on the elliptical.  Hoping my knee will be in better shape in 2024.

More important than miles, as of this writing we have raised

$23,623

for the Children’s Tumor Foundation in 2023!

Every dollar gets us one step closer to a world without NF.  Thank you to all our wonderful donors <3

NF Update:
We finally got our official MRI reports from our recent NIH visit earlier this month:

As you can see from the attached volume plot, Jane’s plexiform tumor remains very stable!  Since Jane’s previous MRI in May, Jane did have a neurofibroma removed from underneath her tongue, but our team feels that that had only a negligible effect on the volume of the tumor overall.

 

Our team also reviewed the whole-body MRI, which we did to “screen” for any changes to the adrenal glands, given Jane’s germline ALK mutation and possible increased risk of neuroblastoma.  Happily, they found nothing new.  Going forward they would like to perform a whole-body MRI once a year (so next in fall 2024) to watch for both neuroblastomas and neurofibromas.

 

Happy news on which to end the year!

 

Jane and Family Update:

Helen and Alec got home for their winter break earlier this week, so we have everyone back under one roof for the holidays.  It’s good to have everyone home!  We’re planning our usual New Year’s celebration in Canada next week—we had to miss New Year’s last year because of canceled flights.  We’re looking forward to ringing in 2024 from Echo Bay, the Lake of the Woods.

Happy Holidays, everyone!