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Welcome!

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

  • The Unexpected Metaphor of a Dreary Dawn

    Happy St. Colin’s Day, round six. I neglected to post anything last year—not because I planned to (I did start writing something) but life got in the way and then it turns out I wasn’t too attached to the idea in the first place. Milestones are simultaneously arbitrary (what does a year mean in the span in the life?) and meaningful (the return to certain times of year brings with it the memories and the memory-feelings).

    This morning, I woke up with a plan that didn’t work out as expected but ended up being just right. Such is life. Due to family circumstances, I am solo (we each are), so I was out of the house before 6 for a hike at Treman Park and then a visit to Green Springs Natural Cemetery. I had thought to make it for dawn but missed the timing—as it turns out, it was better to drive with the early morning sun brilliant through the trees and arrive with the meadow awash in light. Colin loved the sun and it was a reason we picked a spot fully exposed and away from the tree line.

    The hike at Treman had been quiet, since other humans hadn’t yet ventured out and even the birds hadn’t started stirring. The sky lightened imperceptibly to my back but I knew the day would emerge undramatically. A dawn that started as a dim gray-blue layer over the hills emerged ingloriously over a vague span of time, unworthy of a picture and unremarkable in the retelling.

    Many years ago, I wrote about a child who passed away in the ICU when we were in New York in 2009:

    “There was not a distinct moment of death, even as far as I could detect on the monitor of the crash cart. How do you know that the last heartbeat is the last? This is a scientific and perhaps philosophical curiosity, but it is of absolutely no consequence.”

    Kiss Your Baby Now (August 6, 2009)

    So much of my experience that night informed my perspective and gave us clarity on what we did and did not want—for Colin or ourselves. Through good fortune and the actions of many people, Colin had a different end-of-life experience. We were able to shepherd him through a good death, a soft decline where he could feel the love and caring of those around him as his body shut down piece by piece.

    At the end, Colin faded. Evaporated. Each breath could have been the last until, at last, it was.

    The process was gentle and organic. There is no saying how long Colin retained a glimmer of awareness as his brain consumed the last of the oxygen in its cells, harvested what was left in the blood that had stilled in his veins.

    This is the merciful mirror image of an unremarkable dawn: no flashy colors or distinct declarative moment. The dawn that I met this morning was the one I expected and hoped for, the one that sings in harmony with an ending that did not follow the roadmap we had plotted but concluded in the best way possible.

Read more in our archives.