Tonight's picture was taken in July of 2009, two months before Mattie died, or one month before we learned that Mattie's cancer had spread throughout his body. Amazing what a difference a month can make! I typically do not show this photo because it illustrated just how emaciated Mattie was by that point in his treatment. His right leg, which was operated on, was practically skeletal looking rather than the size of a typically growing boy his age. Despite how frail Mattie was, he wanted to help paint our deck. Mattie was always my painting helper, and he was an excellent painter! He was precise, neat, and knew how to get the job done. My kind of painter!
Quote of the day: It's funny. All you have to do is say something nobody understands and they'll do practically anything you want them to. ~ J.D. Salinger
I remember in high school reading JD Salinger's, A Catcher in the Rye. I loved that book, and when I came across this quote tonight, I paused and first said, what?! But then I thought about an article I read today and put it in the context of Salinger's quote! When I did that, not only did the research article make sense, but then so did Salinger's quote!
I am working away at writing a chapter for a cancer book, and in the process I read an article today that drove me BONKERS! I mean bonkers. I will quote one paragraph from the article to give you a flavor for what could have possibly sent me over the edge......................
"As cure rates began to improve, Jan van Eys emerged as one of the earliest and most eloquent researchers to understand the concept of the fully cured child with cancer. He conceptualized cancer as another normal childhood illness - a major stumbling block, but one that could become just a chapter in a child's life. Moreover, a truly cured child would be similar to same-aged peers in development, maturation, achievement, and personal outlook for the future."
Well I am not sure where to begin with this! I continue to see the word "cure" in childhood cancer articles, and the claim to such remarkably high cure rates, like 90% chances for long term survival is simply NOT TRUE! Of course, that maybe true for children who have leukemia. But if we factor in children with all other forms of cancer, this 90% cure rate, would drop significantly! Osteosarcoma doesn't have a 90% cure rate, not even on a good day. Try 60-65%, and in Mattie's case, with multiple lesions, he had a 15%-20% chance of survival.
So this author's notion of childhood cancer being a "normal childhood illness" at some point in the near future is a pipe dream. A definite pipe dream in my lifetime given the lack of funding and progress in drug development in the last twenty years. So I am not holding my breath for a cure for diseases like Osteosarcoma, where the number of kids impacted each year in the United States is so small in comparison to adults with cancers. There are no incentives for drug companies to manufacture drugs for these children. It is plain and simple.
How this ties into Salinger's quote however, is I think other researchers have been enamored by van Eys' work and vision. I am not sure they truly understand the ramifications of what van Eys is saying, but they embrace it and pass the message along and publish it. The problem with also promoting a child who has survived cancer as just the "normal child" is that we know all too well about late effects. These are the side effects that occur from the toxicity of the treatment that these children and teens endured. The side effects can range from heart issues, hearing issues, high blood pressure, diabetes, sterility, and even secondary cancers to name a few. These are just the physical side effects, there are also a host of psychological ramifications as well. So even if a child physically survives cancer, they will never be fully cured and just like their same aged peers! If it happens, it is rather!
I am not sure why researchers continue to promote such falsehoods and use misleading facts and words! It truly bothers me and as I sit and work on this chapter, I find it is very hard to write objectively because I am a parent who lost a child to cancer. I have a different perspective and at times when I write, I catch myself writing as a parent and not a researcher/professional.
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