Adrift in the Waters of Childhood Cancer -- Arguing to Change the Standard of Care

April 11, 2008 will always remain etched in my memory for one simple reason. It is the day that we heard the words "your daughter has cancer." They are four of the worst words that a parent could ever imagine hearing. They were compounded with the horrifying statement that our daughter Alexis was only given nine months, maybe a little more with standard treatment. Experiencing that was bad enough. What happened next leads me to write this piece and make the following suggestions. After hearing those terrifying words, we were in essence sent out to drift like a boat cut loose from its dock. We were placed in a system that is difficult to navigate, filled with unfamiliar terms and concepts that are beyond the general comprehension of non medically trained people. There was little explanation of the system beyond that point and as parents, scared for what the next day might hold, we were left to float in a sea of endless questions and concerns.

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