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| Jane's jack-o'-lantern this year |
NIH Update:
Jane and I had a relatively uneventful 6-month check-up at NIH last month.
Our very full schedule
At this visit, Jane had all her regular testing and MRI of her facial tumor, but also her annual full-body MRI. (Over 90 straight minutes in the scanner, literally bound in receiver coils from head to toe. Rock Star.)
I am happy to report that Jane’s tumor remains stable and all her testing was normal. Our Pediatric Oncology team again talked about the possibility of weaning off of selumetinib in the next few years. There’s still not a lot of information, but it appears that some plexiform neurofibromas stop growing on their own in early adulthood, so in those cases selumetinib is no longer needed. The trick is figuring out which ones will stop on their own, and which won’t. We’re hoping there’ll be a bit more data by the time we have to make this decision.
NF Update:
This fall saw the release of the film A Different Man, a black comedy/psychological thriller starring Sebastian Stan (probably best known for playing Winter Soldier in the Marvel Cinematic Universe) and Adam Pearson. Adam Pearson is a British actor with neurofibromatosis. (I wrote about him once before in this blog.)
A Different Man tells the fictional story of Edward (played by Sebastian Stan), a man with a significant facial difference. After Edward undergoes an experimental drug trial that “heals” his face, the film follows Edward’s experiences with his new appearance. However, he soon becomes fixated on an actor, also with a facial difference, in a stage production based on his former life. Adam Pearson plays Oswald, this stage actor. The story that touches on themes of identity, self-perception, and physical appearance.
The film has gotten many positive reviews, including from the New York Times, calling it “deft and clever”: “Sebastian Stan and Adam Pearson star in a marvelously inventive dark comedy about a man who can’t change his insides.”
He also hopes to help normalize facial difference. "If what I’m doing now means that younger Adam Pearsons don’t have to walk through hell in school, or that someone who looks like me can walk into a pub and it isn't a big deal, then I've accomplished my goal."
I found his most affecting comment was, “My brother and I were raised to live the life we’ve got and not mourn the one we don’t have.” <3
Because A Different Man is prominent film involving NF, the Children’s Tumor Foundation posted a guide to viewing it. “The NF community may be wondering if they should see the film. While we’re not film critics, we feel it’s our responsibility to provide the facts and caution viewers, especially given its R rating and disturbing content. It’s been described as a dark comedy, which may not resonate the same way for those with NF. For those who enjoy these kinds of films, it might offer a thought-proving experience.” It goes on to list key facts and considerations about the film’s representation of NF, and about NF in general. Most important is that there is no “miracle cure” for NF as is portrayed in the movie.
I have not yet seen the film, but plan to. Mostly, I am simply relieved that the character with facial disfigurement is not the villain—a low bar, granted. But I hope Adam Pearson gets his wish for Hollywood to do better by the NF community. And I for one hope the film does well—if only for the opportunity to spread more awareness of NF.
Running Throwback:
Here is a
little gem for long-time readers of this blog. In October 2010, I was about to run my first marathon. A local TV station learned that I was running
for my daughter, and asked me for an interview.
The video was posted online, but about ten years ago the station changed
hands, and the link was broken. I
thought the video was lost for good, until a new producer at the station
recently dug it out of the archives for me!
Here it is, with three-year-old Jane and family—enjoy!
