This site provides information and support for families facing a diagnosis of ependymoma in a child: from the day of diagnosis through relapse or long-term survival, there is a lot to know and navigate. The site is a companion to the FaceBook support group, a worldwide group where families are able to ask questions, seek support, and connect with others dealing with similar issues.
About the Blog
In addition to the resources available here, we are the home to the blog for Colin, a boy who loved tractors (but developed a broad range of interests) and was diagnosed with anaplastic ependymoma in 2009. He had a complicated medical history but persevered and thrived before relapsing and, after three incredible years, died of the disease at age 10.
The arc of his story and the difficult decisions at all phases are helpful to other families, so it lives here as a resource and, despite the outcome, a source of hope. The overview, separated into different phases of his life and treatment, is on the Colin’s Story page.
Our latest blog post
- Year Seven: The Ship of Theseus Sails Off into the Sunset
As our bodies replace our cells, one by one, we are all living a thought experiment. The Ship of Theseus (Theseus’s Paradox) asks whether a ship is still the same ship after all its planks have been replaced. In the seven years that have passed since Colin died, do any cells remain in my body that experienced the strangely strong grip of his soft little hand or remember his infectious laugh?
After that long (more or less), our cells have all been replaced, renewing and refreshing the very bits of our brains that hold the memories of the things we hold dear. Does this cycle change the ghosts that scamper through the mind’s eye?
Memory is an unreliable archivist. Only photos and videos anchor truth to our imagined past, though the most powerful reminiscences seem to live inside me. There is no separating him from me or his influence on who I am. A child may be the product of their parents, but a child also transforms their parents.
Time has continued to stretch forward, leaving Colin’s direct imprint on the world in the past, a footprint in the sand. His brother is a legal adult and graduates from college next year and his friends are embarking on their own college journeys. Their impending graduation from high school seemed impossibly distant but, a few months from now, an empty chair will remind us of the effervescent spirit that bubbled over so many lives.
I don’t care if people remember Colin’s name but I hope they remember how deeply he loved the life he had.
Last night, I had a dream that involved chewing gum with an insufferable texture and I awoke from that dream into another one in which the revolting idea of sausage-flavored chewing gum popped into my head. I awoke for real and, before falling back asleep, arrived at the conclusion that, if AI is good for anything, it’s for creating a 50s style ad for sausage chewing gum.
Often, dreams don’t survive into daylight, but this one had lasting power, not only because of the Inception-like nesting of dreams. I thought how mischievously Colin would cackle if we did create that ad (I could imagine him exclaiming, “Chewing gum that tastes like sausage! That’s disGUSting!” and then erupting in unbridled guffaws). And I contemplated how much he would enjoy the power of AI to bring to life such absurdities.
So I asked Claude (Anthropic) to come up with copy for a 30-second ad spot:
Delightfully Daring! New Sausage-Flavored Chewing Gum!
[Upbeat orchestral music plays]
ANNOUNCER: [enthusiastic voice] Ladies and gentlemen! Prepare your taste buds for the most revolutionary confectionery sensation of 1955!
Introducing MEATYCHEW–the world’s first sausage-flavored chewing gum! Why settle for boring mint when you can enjoy the robust, savory experience of premium pork sausage in convenient chewing gum form?
MEATYCHEW delivers that hearty breakfast flavor any time of day! Just pop a stick in your mouth and experience the satisfying taste of sausage without the mess or preparation!
The modern homemaker knows that MEATYCHEW is perfect for the busy husband who missed breakfast or the growing children who need protein on the go!
MEATYCHEW – it’s not just a gum, it’s a meal in every chew! Available at fine drugstores everywhere. Ask for it by name!
[Cheerful jingle] “M-E-A-T-Y-C-H-E-W! MEATYCHEW is the gum for you!”
I wonder how much the idea borrows from Charlie and the Chocolate Factory and the three-course dinner chewing gum that turns Violet Beauregarde into a giant blueberry. But I’m sure Colin would have enjoyed creating a full-blown Meatychew jingle.
[I also created an image but, due to technical difficulties, I’m not able to upload it right now.]
All of us carry Colin forward, each in our own way. After calling Ithaca my home (on and off) for 35 years, I moved to the Southwest. No matter where I am, I feel the strength of his presence in the Bobolink Field at Greensprings Natural Cemetery. He is a part of the tall grass that waves in the wind and the buzzing vibrance of birds and insects.
Seven years is an eternity that passed in a flash. This observation is no different for any other parent, but the interim hasn’t filled with new memories and stories; Colin is frozen in time and in childhood as his peers grow up. Life persists, in Bobolink Field and elsewhere.
There is no extracting the essence of Colin and the experience of being his mother from me, not that I would ever want to. Even after all my cells are replaced, time and again, I will feel his warm and solid shape pressed against me, literally and figuratively. It doesn’t matter whether I am the real Ship of Theseus as long as I believe I am and his spirit haunts my bones.
- Year Seven: The Ship of Theseus Sails Off into the Sunset
- The Unexpected Metaphor of a Dreary Dawn
- Gratitude is a Fierce Beast
- Happy (St.) Colin’s Day
- Coming of Age
Read more in our archives.