There are many versions of Colin’s story, depending on what you focus on. As a parent, I know that his enduring legacy is not simply that he had ependymoma, but I also understand the value of that narrative to other parents who face a similar shocking reality.
When I grappled with the impossibly difficult decisions of Colin’s initial diagnosis, I turned to stories from other families for clues and wisdom. There was one particular case that represented a cautionary tale to us but was an excruciating and vivid reality for another family.
Colin’s story is complicated and nuanced. It is neither a cautionary tale nor a road map to success. In fact, there is no such thing with this disease and, while the science creeps forward to better and better-informed treatments, there is no panacea for the quiet persistence of ependymoma.
As a parent, you cannot control the outcome; you can only make the best decisions available at the time. If there is a single lesson to be learned in Colin’s story, it is that decisions are not permanent and that you need to stay focused on what is most important to your family.
In the eight years that Colin lived after his ependymoma diagnosis, he suffered tremendous setbacks and triumphs. He used up every one of his nine lives and we reached out to hospitals across the country to find treatments and hope. We ended up at eight different hospitals to deal with ependymoma and a few others for non-cancer issues.
The complete blog is a detailed record of Colin’s story as it unfolded, but there is a lot to sift through. The summaries paint the picture and include a few blog excerpts.
Continue to Colin’s Story:
Diagnosis and Initial Treatment
Colin the Boy
Though Colin always found a way to hold onto his boyhood, he was always a model patient, holding still for CT scans and rapid MRIs, tolerating an IV line and other indignities, and flirting shamelessly with the nurses. He endured so much through the course of his treatment, yet his determination and strong sense of self helped him persevere through this profound experience.
After surgery stripped him of his ability to communicate and move, he grew into a chatty, loving, and unfailingly sociable child. We came to treasure his unique combination of a good nature, strong will, and adaptability. His sense of humor survived all of his trials, as did his ability to charm his many admirers.