by Jonathan Agin, Editor Childhood Cancer Awareness and Advocacy
Joke: What do you get when you put seventy of the world’s top physicians in one room, and forty childhood cancer parents and foundations in another? Answer: Progress.
On May 3rd and 4th, in Cincinnati, Ohio, the second DIPG Collaborative Symposium (www.dipg.org) occurred with amazing results and direction. By the end of the day on Saturday May 4th, well over one million dollars was collectively raised and pledged by close to twenty different foundations and families to support the collaborative research that is mandated by this international group.
Before November 5th, 2012 childhood cancer wasn’t on my radar, or anywhere close to the front of my mind. That morning it all changed when our son was diagnosed with Ewing’s Sarcoma. We went through all of the normal (if there is such a thing) thoughts and feelings that anyone else would in that situation. They were all present: from denial to acceptance, grief to feeling numb, and helplessness to anger. As we started to settle down it was natural to do some reading. Now I want to be clear that we tried to avoid reading about survival rates and prognosis, and focus on learning more about the community in general. The internet is a dangerous place where you can read not only anything you want to see, but anything you DON’T want to see as well.
by Jonathan Eric Agin JD, Editor, Childhood Cancer Awareness and Advocacy
The truth is that I never had any desire to be a part of the childhood cancer community. I would never have chosen this disease as my “White Whale.” Childhood cancer in general is depressing and heartbreaking. Sure, to those outside of the community who have not heard the words “your child has cancer” there are moments of inspiration sprinkled among the very difficult reality. And so, when cancer decided that it would enter into my house on April 10, 2008, the issue of desire was no longer one of self-determination. Childhood cancer, in the form of diffuse intrinsic pontine glioma (“DIPG”), an inoperable brain tumor, forced us into a desperate attempt to save our then two year old daughter Alexis Agin.
On the South side of the border, here in the states, we struggle with raising awareness, not to mention increased federal funding, for childhood cancer and research in general. There are a number of reasons why childhood cancer fails to rise to the level of other more “popular” segments of the adult cancer population such as breast cancer. Unfortunately, I learned this the hard way following the diagnosis of my two year old daughter Alexis with an inoperable and terminal brain tumor back in April 2008. As an American, you are taught to believe that your country can do anything and our possibilities are limitless. After all, we put a man on the moon over forty years ago. Why then was it impossible to cure my two year old daughter? The tumor that took her life was a lot closer than two hundred thirty eight thousand miles away; rather, it was only several inches insider her beautiful head. And thus, as we grew more intimately familiar with the world of childhood cancer, and ultimately I stepped into the role of a childhood cancer advocate and lobbyist, I learned just how amazingly lacking the awareness is for the cause. And this may ultimately be the true tragedy for our kids battling cancer.
The unspoken beast… childhood cancer. It creeps in without a word, demands the near-lethal to destroy it, and leaves a haunting trail for those it touches. While cancer is the leading cause of death by disease in children in the United States, improvements in detection, treatments, and survivorship can make this a thing of the past.
In 2008 we co-authored a research paper published in Current Oncology which concluded that “Canada lacks adequate support programs for parents caring for a child with a catastrophic illness” . At this time, we are very pleased that the Canadian government has recently announced that it will introduce legislation to ensure that working parents of seriously ill children can draw upon employment insurance while caring for their child starting in 2013.