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.
The transformation into a childhood cancer advocate, lobbyist and writer has taken five years. It began the day my wife and I heard those horrible words back in April 2008. And, when my daughter tragically lost her battle on January 14, 2011, my resolve was cemented. I see the journey that I have been on not as my own, although I have certainly been on a path to reinvention, but more to the point, I am continuing Alexis’ fight. It is her inspiration and resolve that I continue. Alexis is the true hero and taught me more about life than any other experience to date.
Throughout the course of the past five years, I have been struck by how little awareness of childhood cancer there is in the United States, let alone across the borders. I have been stunned by how little money is spent in the United States by the federal government specifically for childhood cancer research. Despite the fact that cancer is the number one cause of death by disease for children, it appears evident that the United States government has not prioritized childhood cancer research. And these realities, as well as watching the struggles of my daughter and countless numbers of other children have brought me to this point. It is a crossroads of sorts, a junction in the road. As the path unfolds, it singularly draws me to fight the disease that stole so much from my family, not the least of which is my amazing daughter, Alexis.
When I was first asked to act as the Editor for this section I immediately understood the opportunity. Like the United States, childhood cancer is greatly underfunded in Canada. It is an issue that Canadians and Americans alike who have had to fight this battle understand all too well. What this lack of funding and awareness creates though is opportunity. International collaboration creates the ability to utilize the best and brightest researchers and advocates from all over the world to work through regulatory and governmental issues that maintain the unfortunate status quo. It is far time that we in the childhood cancer community think globally.
My hope is that through this section, childhood cancer gains an additional spotlight. An additional outlet for awareness, funding, treatments and ultimately a cure. My hope is that by growing this platform, we broaden the scope of collaboration and unity in the community beyond the borders that arbitrarily divide in this battle. Childhood cancer is not simply a problem of one country. It is a disease that infiltrates all walks of life, all races, nationalities and religions. It is a disease that indiscriminately selects its victims and in many instances the children unfortunately are left to battle in anonymity. This is my goal, this is my fight, this is my daughter’s journey.