I find it difficult to put into words what the month of September means to me. Truly difficult on several levels actually. There is a part of me that actually does not look forward to the month. It is a thirty-day period in which so many people across the country and the world – having heard the words “your child has cancer” or being moved to action for the cause of childhood cancer – focus an incalculable amount of energy. It is a time that is reserved for childhood cancer advocates to stand on an elevated stage of awareness aimed at generating greater focus for the number one cause of death by disease in children in the United States. It is a time when those who have been unwillingly drafted into the cause and those who have willingly decided that they should “do something” about childhood cancer seek to have gold emblazoned upon the collective conscious of a world that is plagued by so many worthy causes. September is a month that allows those of us in this fight to galvanize and showcase our pain and anguish in a concentrated fashion for children with cancer.
For me, September is exhausting. Living in the Washington, DC Metro area, there are so many events, organizations and people that descend upon the region. It continues to grow each year. It is inspiring when you actually look how far we, as a community, have ventured over the last number of years. When I first was conscripted into the childhood cancer community, after my daughter Alexis was diagnosed with DIPG in April 2008 and marked for death, there was so little awareness and action in comparison to the present time. It is beyond heartening to me that the collective voices of the childhood cancer community have amassed such an effort that there is now a need for a full weekend of activities known as Curefest. This is on top of the Congressional Childhood Cancer Caucus briefing and the events that occur in conjunction. Dinners, galas, briefings at the White House, activities on the National Mall, buildings and landmarks across the globe lit gold, focus group meetings, and many more options to participate.
The action the childhood cancer community has brought to bear in creating this amazing number of opportunities for engagement during September is truly a statement stamped into the sand at the highest levels of advocacy. As my words unfold across the page, I grow drained just thinking about all that will take place during the thirty days in September. Part of me simply wants to shut off my social media feed, get on my favorite bike and just pedal ceaselessly until the calendar flips to October.
Shortly after Alexis died in January 2011, it became all too obvious to me that I was no longer able to exist in the general population. I felt like Brooks from the Steven King novella, Rita Hayworth and the Shawshank Redemption (later turned into the blockbuster movie The Shawshank Redemption). Brooks, upon being released from prison after decades finds that he is unable to survive on the outside. He is “institutionalized.” His character, in coming to this realization, ultimately takes his own life. A couple months after Alexis died I tried to go back to the practice of law. I tried to figure out ways to continue to earn an income from being a lawyer while also engaging as a childhood cancer advocate to a greater extent. During the course of Alexis’ thirty-three month long journey with childhood cancer, I found that I had a voice and an ability to advocate for change. I discovered as I sat in my law office that the seeds sown during Alexis’ fight lit in me a fire that made it impossible to do that which I had done for close to twelve years. Consequently, I worked harder in my efforts as a childhood cancer advocate. I decided that I could not separate my “unfortunate passion” from my professional intentions. This struggle took approximately three years before I was able to fully make this professional transition. I lost the ability to function in the outside world. I found that childhood cancer had institutionalized me over a period of thirty-three months.
I am very fortunate to be able to spend my professional life focused on childhood cancer as the Executive Director of the Max Cure Foundation, co-founder, Development Liaison and Institutional Official of the Children’s Cancer Therapy Development Institute and of course as a section editor here for CKN among other activities. Research. Family assistance. Legislative and regulatory advocacy. Awareness. Writing about the cause. Speaking. I GET TO focus upon these tasks daily. A passion borne out of pain has driven me to a place where my September now stretches 365 days a year. It is a double edged sword that ultimately explains how I view September. There is no off switch on my September. The same could obviously be said for each and every person that has been imprisoned in the institutional world of childhood cancer. There is no off switch for a parent or caretaker who has lost a child to cancer or who suffers alongside a child in treatment or worries about recurrence.
I liken being involved in childhood cancer advocacy full time 365 days a year to running a marathon every day. Or, as one of my friends and brother in arms Tattoo Tom Mitchell, Executive Director of the Stillbrave Childhood Cancer Foundation does, he tortures himself by running 200-mile ultramarathons to raise money. There is a pace that is necessary for survival. It is simply impossible to jump from the starting gun in a dead sprint every day and be effective for the cause. Despite the fact that many of the kids fighting now as well as those to come need us to sprint as they fight for their lives, I personally need to pace myself throughout the year or find that I will soon be out of the race.
This leads me back to September, and my personal relationship with the month. Despite my impulse to head in the opposite direction, I’ll find my own pace during the month-long sprint that unfolds. September encourages me, excites me and at the same time exhausts me. I suppose September to me means that the childhood cancer army marches at a strength that allows me to step back some and maintain a sustainable pace. September means so many inspiring people carrying the torch and lighting the fires for children with cancer. It is humbling. September will end soon enough though, and before that happens pink will wash over the world. The marathon will continue. And 365 more days will unfold.
Jonathan Eric Agin, JD, is the Executive Director for the Max Cure Foundation and the Institutional Official, Development Liaison for the Children’s Cancer Therapy Development Institute, a non-profit childhood cancer research biotech located in Beaverton, OR. He is also the Cancer Knowledge Network (Canadian Oncology Journal) Childhood Cancer Awareness and Advocacy Section Co-Editor and frequent contributor to the Huffington Post. Jonathan is an attorney by training and a former trial lawyer from Washington, DC. He is one of the most recognized names in the childhood cancer community. He has testified before the United States Congress on issues of identity theft impacting the childhood cancer community, which ultimately led to the introduction of bipartisan legislation named after his daughter Alexis (HR 2720, The Alexis Agin Identity Theft Protection Act of 2013). This legislation was later enacted into law as part of the overall budget deal of 2013. Jonathan’s legislative advocacy has proven effective in the passage of several bills in a climate of congressional stagnation and he continues to work closely with members of the community and beyond on legislative initiatives impacting the rare disease community. He has provided public comment before the FDA pedODAC Committee on the topic of biopsy in children with DIPG (an inoperable and almost universally fatal pediatric brain tumor). Jonathan became involved in the childhood cancer community following the diagnosis of his daughter Alexis at the age of two with DIPG in April 2008. Alexis battled heroically for thirty-three months until January 14, 2011. Jonathan frequently interacts with members of Congress and their staff, the White House, as well as various regulatory agencies and other cancer organizations in an effort to improve the plight of children with cancer. He is an original founding steering council member of the DIPG Collaborative. Jonathan resides in Falls Church, Virginia and has four children, Alexis (1-31-06 to 1-14-11), Gabriel age 7, Trevor age 4 and Kylie 2 years. Jonathan maintains his own website for his advocacy activities: www.jonathanagin.com and can be followed on Twitter @jonathanagin. In his spare time he also competes in endurance events like running marathons and triathlons.