NIH Epilogue

Running Update:

3/22/2021 – 3/28/2021:	28.2 mi	4:26:59
3/15/2021 – 3/21/2021:	25.1 mi	4:11:00

I completed the NYC Virtual Half Marathon today!

I’m pleased with my time, considering I had no water or fuel stops, no cheering spectators, and it poured rain!  Since it was a virtual race it will take a few days for all the participants to upload their data and for the New York Road Runners to post official results.

My first race of 2021 for the Children’s Tumor Foundation is done!  It remains to be seen what the rest of our races will look like this year.
 
 
Jane Update:
After we returned home from NIH, Jane had a week of remote school to continue her recovery from surgery.  However, this past week she went back to school in-person and did very well.  She was a bit tired the first day, but had no problems at all the rest of the week.  She received a warm welcome from her teachers and classmates, including a surprise in the mail the first week we were back.

Jane's classmates and teachers are so awesome!

Jane and I sent some gifts to the people who had taken care of us at NIH.  We sent some CTF t-shirts and some Starbucks gift cards, but we also sent some  special books for special people.  

If you read our posts from the hospital you might be able to tell which book is for whom :)

 
NF Update:
We got some final results from Jane’s MRIs and surgery once we were back at home, and all were reassuring.
 
First, I am thrilled that Jane’s facial plexiform neurofibroma—the one she takes medication for—is stable based on the MRI.  I was worried it might have grown because of all the times Jane has had to stop taking her selumetinib this past year. 

The MRI also showed that the tumor in her abdomen (technically, in her “retroperitoneal space”) had continued to grow even since her last MRI in November 2020.  I am so pleased we made the decision to remove the retroperitoneal nodule when we did.  It makes everything Jane went through this past month worth it.

The pathology report on the retroperitoneal nodular lesion showed that it was a “neurofibroma with mild atypia”.  Thankfully, the atypia does not increase the risk of recurrence.  In fact, we learned that many of the distinct nodular lesions they have resected at NIH have some degree of atypia and they have not seen any local recurrence even when they just remove the tumor itself, and not the surrounding tissue.  In case you’re curious, here is a paper published by our doctors, Dr Chittiboina and Dr Widemann, about their experiencewith these surgeries!

 
 
We haven’t even thought about restarting Jane’s selumetinib regimen yet—probably sometime next month, and not until she’s fully healed.  The timing of our next return to NIH will depend on when Jane restarts the drug, but it’s likely to be towards the end of 2021.
 
Thank you all again for following along with our story and for your generous donations to the Children’s Tumor Foundation on Jane’s behalf!  We are so lucky to have such wonderful friends and family <3