Five years ago today, Dr. Craig Kemper cut open my skull and removed a racquetball-sized tumor. It was a tricky surgery because the tumor was wrapped around my brainstem. Extracting my unwanted sidekick ended up taking about eight hours.
After surgery, my family and I anxiously awaited the pathology report. Early guesses were just that – guesses. They weren’t sure what type of tumor it was.
When the report came back as ependymoma, Dr. Kemper was surprised. His original suspicions were confirmed by the pathology report, but ependymoma is so rare in adults that Kemper hadn’t truly believed his original instincts.
Fast forward four years and nine months and I got a new surprise. The Collaborative Ependymoma Research Network (CERN Foundation) had declared April 19th as National Ependymoma Awareness Day.
That’s right, the organization dedicated to finding a cure for my tumor type had unknowingly picked the anniversary of my craniotomy as the focal date of their new Awareness effort! Happy Coincidence!
Now on a day that I’m already reflective because of what happened five years ago, I have an outlet to direct that energy.
First, I contacted the Governor of Texas and the Mayor of Austin, asking that they issue proclamations to recognize Ependymoma Awareness Day.
Since then I’ve been coordinating efforts with the CERN Foundation to promote the event across various social media platforms. If you’re following Hawktober on Twitter, you’ve undoubtedly noticed!
Later today, CERN will have a butterfly release to celebrate the occasion. I’ll post video of the release when it’s available.
CERN chose today as Awareness Day because they had already planned to hold a semi-annual meeting. From their website:
The CERN Foundation is comprised of a dedicated group of scientists and adult and pediatric neuro-oncologists working to find new treatments for ependymoma, a type of brain tumor. The CERN Foundation has one ultimate goal – curing ependymoma. We choose CERN Foundation members both for their scholarly excellence and their commitment to cooperatively working to cure ependymoma. Together, CERN Members collaborate by sharing research findings, responses to new treatment regimens and other new developments in a comprehensive effort against this brain cancer.
As a Survivor, it’s great to have that kind of team fighting in your corner.
Now, I suppose I should say something brilliantly insightful borne from five years of survivorship. Sorry, not today. I have family in town and we’re going to go enjoy life – I’m still here, so what else could we do?
If you would click an icon below and share this story, I’d appreciate it. Awareness is everyone’s responsibility.