As the founders of Cian’s Cause, we are merely two parents (not physicians) trying to give our son a legacy and spare even just one family from the pain we experienced being accused of child abuse – not to mention the wonder we experience daily: had Cian been diagnosed even four days earlier, would that have prolonged our time with him even by one week?
Something we heard a lot in talking to Cian’s doctors was that physicians are trained to think, “When you hear the sound of hoofbeats, think horses, not zebras.” Most parents think that way as well when it comes to the health of their children – I know we did until August 24th, 2006 – we honestly didn’t know any better.
A child being diagnosed with any form of cancer is a relatively rare event – about 10,000 kids are diagnosed annually across a fairly narrow spectrum of cancers. So while most families will never experience what it is like to process such devastating news, and the degree to which your life can get turned upside down, many will and when it happens, there is very little warning, genetic or otherwise.
There is true parental intuition, though it may at times be trumped by medical knowledge and algorithms – however any parent that feels that something is wrong with their child must stay vigilant. If you aren’t satisfied with a diagnosis, press the physician – ask for a list of differential diagnoses. It’s not that doctors don’t care, they are just crunched for time in an environment that is largely comprised of viruses and other benign childhood conditions – the hoofbeats.
Don’t ever be afraid to be the “hysterical parent.” We were compliant, nodding our heads to whatever we were told Cian had, though clearly there was something so wrong. Now we know better and hope others can learn from our experience.