Your child was just diagnosed with neuroblastoma… now what?


My sweet 18-month old son, Will (or Willie, as we call him), was at his regular eighteen-month check-up when the Nurse Practitioner noticed a mass in his upper abdomen on exam.

Twelve grueling hours of tests later at our region’s top children’s hospital, we were given the news we already knew: it was likely neuroblastoma, and it was aggressive, growing out of his adrenal glands to the size of a grapefruit in the short time since he turned one, at the earliest... we’ll never really know when it began.

You’re likely reading this because your child, or a child you love dearly is somewhere on the long spectrum between diagnosis and remission and you don’t know what to expect. I understand exactly how you must feel. And because our son’s case was one of the most complicated cases ever seen by our hospital due to a series of events that have rendered him unable to complete or repeat treatment, I hope I can help answer some of those questions. But more than that, I hope that I can make sure you don’t feel as alone as I did–as WE did– during the diagnosis, treatment and, hopefully, remission stages.

That first week.

A letter from a parent who's been where you are.