More Uplifting Stories While We Wait

 Running Update:

12/7/2020	Run	5.0 mi	46:46
12/9/2020	Run	5.0 mi	47:37
12/11/2020	Run	5.0 mi	49:03
12/13/2020	Run	10.3 mi	1:43:24
12/14/2020	Run	5.0 mi	48:38
12/16/2020	Run	7.6 mi	1:15:01

Tonight I was honored to attend the virtual NF Endurance Team End of Year Celebration & Awards Ceremony and was recognized as the CTF Top Fundraiser in 2020 for the NYC Marathon!  Thank you to everyone who donated to our campaign <3  

You can always donate at www.KRath4Jane.com!

Jane Update:

Earlier this week Jane had a follow-up (in person!) appointment with our wonderful local Dermatologist, Dr Antaya.  The selumetinib-induced aceiform rash on her face and trunk is improved since the summer but still significant.  We are going to stay on the higher dose of doxycycline for now, but we’re going to change our topical regimen.  We had tried triamcinolone cream to her trunk 2-weeks-on, 2-weeks-off, but that didn't seem to make a big difference.  He suggested changing to pimecrolimus cream which has a similar effect to the steroid but can be used continuously, and can be used on her face.  We will see him back in 2 months.

Dr Antaya let us know that the case report he and his student had written about the regimen we used to treat Jane’s paronychia last year was published in the Journal of Pediatric Dermatology!  (Treatment of MEK inhibitor‐induced paronychia with doxycycline.)  Jane’s toes are famous :)  This is the second time Jane’s case has been published in a medical journal.  (A link to the first is here.)

Towards the end of the visit Dr Antaya told us the story of an older boy who recently came to him with a large tumor on his side.  The boy was about to undergo surgery with another doctor for what was thought to be a lymphatic malformation.  Dr Antaya set them straight and diagnosed it as a plexiform neurofibroma!  The surgery (which would have been dangerous on a plexiform neurofibroma) was canceled and child is now being seen by an NF specialist. He will be treated with selumetinib, which, as Dr Antaya put it, is thanks to Jane and the other children who participated in the clinical trial which led to FDA approval!  She's helped make a difference in others' lives <3

NF Update:

The Children’s Tumour Foundation Australia recently posted an awesome explainer about different tumor types in NF.  Check it out.

The text accompanying the post read:

It can be challenging trying to understand all of the different tumour types and how any of them may impact your health.

There are many different types of tumours seen in NF1, but what does it mean to have a neurofibroma versus a plexiform neurofibroma or a schwannoma? This image provides a visual representation of their differences.

Schwannomas can be removed without disturbing nerves, whereas the removal of neurofibromas will cause damage to the nerve on which it is wrapped around. A plexiform neurofibroma envelopes multiple nerves meaning they can be difficult to remove completely, which is why doctors often speak of "debulking" a plexiform neurofibroma with surgery.

If you would like to learn more about the different tumour types, symptoms and treatment options, head to our website at www.ctf.org.au

#conquernf

Henri Update:

We had the first major snowstorm of the season last night and ended up with over a foot of snow today!  It was Henri’s first big snow.  He was hesitant to explore it at first, but ended up having a blast, and even playfully chased our young neighbor as he sledded down the hill in our backyard.