Tuesday, July 5, 2016

Running Update:
9.0 mi
3.2 mi
5.0 mi
5.0 mi
9.1 mi
4.1 mi
I don’t really have anything to say about running in this post, but feel I have to be faithful to the log :)

Jane Update:
This past week Jane took a class at our local art center.  The program focused on Pop Art by artists such as Haring, Warhol, and Lichtenstein.  Here is her self-portrait <3

NF Update:
Now that we’re on an every-six-month schedule at the NIH, I don’t have as many medical updates to provide; however, that doesn’t mean we ever stop thinking about NF.

A few days ago Jane was reading Pottermore, a website of writing by JK Rowling.  One feature on the site allows the reader to discover which magical house suits them by answering various questions, some simple (“What pet would you choose to bring to school?”) and some much deeper.  Jane was playing along when she was asked, “Think of the question would you most like answered by a person or an all-knowing being or device?  Which of the following most closely resembles the answer you’d like to hear?”  She could select from Magic-Eight-Ball-type responses such as “Yes” or “Never” or “Without a shadow of a doubt.”
She said, “I’d ask why I was born with a tumor.” 
It winded me for a moment.  I didn’t realize she had “Why me?” type of thoughts.   Despite the extra medical care she receives for NF, she (and our family) have never acted as though her condition was a burden.
She selected the answer, “I will show you everything.”

Later that day I asked her a bit more about what she wanted the answer to be.  It turns out that she was looking for a scientific answer, rather than an existential one!  (Much easier to address!) We talked a little bit about our genes and DNA, and how sometimes if a gene grows in an unusual way it can cause tumors.  She seemed satisfied with the answer.  

I've explained these things to her before, but I think she is old enough now to understand it better.


A few times a year Jane’s elementary school dedicates a day to a different charitable organization. Each of these days is associated with a fun activity for students, and the children are encouraged to donate a dollar to the featured charity.  For example, in the past couple of years the school has had Crazy Hair Day for Special Olympics, Crazy Hat Day for our local ambulance department, and Pajama Day for the Make a Wish Foundation.

Before the end of the past school year, the principal of Jane’s school contacted me to ask if Jane and our family would like to hold a fund-raising day next year for the Children’s Tumor Foundation, a group dedicated to improving the health and well-being of individuals and families affected by NF.  I asked Jane what she thought. 
She immediately said, “Sure!  That’d be great!” 
I asked her if having a school event dedicated to NF would make her feel self-conscious about having NF herself. 
She said, “I'm not the only one with NF in my school.”
I told her gently, “Actually, I think you are...”
She thought for a few moments, and then said, “Well, I'm the only one in the family with NF and I don't feel self-conscious about it, so why would I feel self-conscious at school?”

It’s moments like these that reassure me that Jane is going to be just fine, no matter what life throws at her <3