The calendar has yet again flipped to September. Summer has wound down and school has begun to kick back into full swing. Facebook and other social media sites are replete with people posting smiling pictures of their children bounding onto the steps of the school bus or wearing their new backpack. It is a cycle that repeats itself like clockwork. Then there are those of us who post about a different subject. Gold; the color of childhood cancer. For those of us who have been touched by childhood cancer, September means the start of a month-long mad dash to create as much awareness as possible. The question is, are you aware?
Feverishly, we fight for space on social media, blogs, billboards and buildings in a mad dash to turn the world gold. One question lingers: Is there really a lack of awareness about childhood cancer? This is a question that really did not personally strike me until my own daughter was diagnosed with a terminal and inoperable brain tumor at twenty-seven months of age. On April 11, 2008 my wife and I were brought into a small nursing room by an attending oncologist who spent no more than three minutes with us and broke the news that our daughter, Alexis, had nine to twelve months to live even with treatment. Aware? Before April 11, 2008, the answer is clearly no, I was not really aware. What is truly perplexing to me is that I had a friend who died of a brain tumor when he was thirteen. A soccer teammate, his death did not burn upon my brain the plight of children with cancer despite the close ties that we had. Before April 2008, childhood cancer was a far off knock on someone else’s door.
Since that knock, and ultimately the death of Alexis in January 2011, I have unfortunately become all too aware. I have become aware of the fact that childhood cancer is the number one disease killer of children in the United States¹. Before receiving the knock on my door, I was not aware of this fact. Before April 2008 if you waved a gold ribbon in my face and asked me what it stood for, I would not be able to provide you with the right answer. Now I am painfully aware. I have become aware of the paucity of federal funding for childhood cancer research across the globe².
The need for childhood cancer advocates to paint everything gold to raise awareness is a direct outgrowth of the overall lack of knowledge of the plight of children with cancer across the globe. For those children with the “better” forms of cancer, the story is one that contains some hope. In reality, there are many children who are diagnosed with forms of childhood cancers that have not seen any increase in overall survivability for forty plus years. Moreover, even those children lucky enough to be diagnosed with a form of cancer that has a higher cure rate, the treatments leave them scarred for life if they make it five years beyond the initial diagnosis. And thus, awareness of the gold ribbon and every building lit up gold potentially brings one more person to the proverbial table of knowledge. And that one more person may just be that individual who is capable of making a significant contribution that brings us one step further to the goal of universal survivability regardless of diagnosis.
Welcome to September. If you just finished reading this piece, then you no longer can say you are not aware. Now, the torch is passed and the flame burns a bright gold. Tell another of what you have learned and let the word go forth. Go gold in September and every other month for that matter as childhood cancer is not simply a disease that impacts children and families for one month. Rather, it effects children and their families three hundred and sixty five days a year and in all instances, the remainder of their lives.
You are aware.
Jonathan Eric Agin is a childhood cancer advocate, speaker and an attorney (www.jonathanagin.com) in Washington, DC. He is married to Neely Agin and is the father of Alexis, Gabriel and Trevor Agin. Alexis was diagnosed in April 2008 with a tumor in her brainstem and battled for 33 months before passing away on January 14, 2011. Mr. Agin, along with his wife, run a Washington, DC chapter of a pediatric brain cancer foundation. In his spare time, Jonathan participates in endurance events, such as triathlons and running races to raise increased awareness for childhood cancer.