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Monday, April 16, 2007

Monday April 16th Update

On this grey Monday, I find myself particularly dreary. I’m tired, scared, and so sad for my son and what he is enduring. I just want him to be well and would do anything in the world to cure him. I’m tired of the ambiguity of doctors and need someone to confirm what I know in my heart – that he will get better. Of course, no one will and I just need to continue to remain vigilant in my belief that the cancer that has invaded my son’s body will be eradicated.

After reading a piece in yesterday’s NY Times “Week in Review” section, I’ve been toying with writing my own op-ed. The piece was on how, despite three high-profile people disclosing their cancer diagnoses, cancer cure (or maybe it was mortality) rates are actually greatly improving. There were all kinds of stats and graphs for all kinds of cancers…but one glaring omission…not one children’s cancer was mentioned. NOT ONE. One of the troubling things I’ve heard since being a part of the children’s cancer community is that as a whole, children’s cancers receives a pittance of the research dollars raised. And drug companies are not as interested in spending the money to research cures because kids can’t vote and aren’t famous and therefore drug companies don’t care as much about them. The fact that 3F8, the mouse antibody that Sloan-Kettering pioneered, has been around for 20 years but not one drug company has been interested in manufacturing it because of the costs involved is so disheartening to me. Can you imagine this? This drug is still “experimental” after 20 years because no drug company wants to invest the money to manufacture it. I’ve also been told that mainstream media doesn’t think much about children’s cancers because, after all, there aren’t a lot of famous children and therefore a child being diagnosed with cancer isn’t going to generate the interest that a famous adult would. Now, I haven’t been able to confirm any of this…but yesterday’s piece in the Times makes me suspect that what I’ve heard is probably true. If children are our most precious resource, then why wouldn’t we care enough about them to cure them? Why? What do I need to do to change this? Do I need to parade Liam in front of the three networks so that they’ll care? Should I have stopped Matt Lauer when I recently saw him and his wife taking a leisurely stroll with their child who looked to be about Liam’s age? Would Matt have cared that the stroller next to his child’s had a child battling cancer? I wonder if Matt is as ignorant to silent cancers that impact primarily toddlers like I was a few weeks ago? Should I have stopped him on behalf of all the children fighting children’s cancers? Should I stand in front of the windows of Good Morning America, The Today Show and CBS This Morning with pictures of Liam so that they can see the sweet, happy, energetic, wondering face of a child with cancer? What do I have to do to get someone of Oprah’s stature and influence to get attention for these horrible diseases that try to rob parents of their sweet children and society of our supposed most precious resource. Maybe it’s all lip service.