Follow-up to NIH visit

NF Update:

This week I had a follow-up conversation with Dr Andrea Gross, one of our team leaders at NIH.

Jane’s right-sided plexiform is stable—always a good result to get!  And a happy way to enter the holiday season.

A friend and mother of another child taking selumetinib for a plexiform neurofibroma recently posted online, “Friends often ask, why can’t they just surgically remove the tumor? Here is the latest radiology report to explain what would be at stake…”  She then posted the radiologist’s description of her son’s plexiform, which is a benign but locally invasive type of tumor.

I will follow suit and present part of Jane’s report:

“Again noted is a large plexiform neurofibroma involving the right side of the face including right masticator, infratemporal fossa and parotid spaces with extension into retromandibular space and involving the floor of mouth.”

Translation: it involves pretty much her entire mandibular nerve (a branch of the largest cranial nerve); her external carotid artery, facial nerve, and parotid gland (in the “parotid space’); plus other important nerves and blood vessels entering and leaving her skull (in the ‘infratemporal fossa’). 

Not something you want to cut into.  Thus, we carry on with selumetinib!

Gray’s Anatomy, Plate 784

As I mentioned in my last post, the full-body MRI also showed an irregularity in one of the bones of Jane’s right shoulder.  Our team thinks it is a “benign fibrous cortical defect” or “non-ossifying fibroma”, both of which are associated with NF, and neither of which would require any treatment.  However, our team would like us to get an x-ray of Jane’s shoulder at home sometime in the next few weeks/months just to fully evaluate.  As you all have witnessed, there is always something to chase with NF.

 

Running Update:

This year marks 10 years of running an average of 1000 miles a year for NF!

My yearly running totals:

2013:  1010.4 mi
2014:  1010.2 mi

2015:  1010.2 mi
2016:  1056.9 mi
2017:  1084.5 mi
2018:  966 mi
2019:  1002.2 mi
2020:  950.1 mi
2021:  1140.1 mi
2022:  1056.7 mi*

*I’d like to add another run or two before we head to Canada at the end of the year, but I’ve been down for several days with some sort of bug (not COVID) so I’m not sure if I’ll be able to.

I’m also almost at 10 years of blogging about NF, but I’ll talk about that more next year!

 

Jane and Family Update:

Helen and Alec got home from college this week!  It’s wonderful to be all together again <3

We’ll head to Canada after Christmas and will celebrate the New Year there, as usual.

I hope everyone has a healthy and restful holiday!