Life takes many winding and unexpected turns. I suppose that is quite an understatement in many ways. When I sit back and look at where I came from, where I wanted to be, and where I am today, I hardly recognize the paths that I have chosen to walk and those that have been forced upon me. I have been forced to endure the difficult path that the loss of my sister brought upon myself personally, as well as Neely and my family in general. And then of course, we have been forced to walk the path that the loss of Alexis brought upon us. Alexis’ death has caused us to struggle personally and professionally. As parents, Neely and I physically watched as Alexis left us here on earth. We saw that moment and will see it and live it for the remainder of our lives. There have been many immense difficulties that have been played out in our lives over the past twelve years. These were the paths that were chosen; they were not of our choice.
In 1996 I made the decision to go to law school. At the time, I was very unhappy in my job in sales and marketing and wanted to do something bigger. In full disclosure, I went to law school because I wanted to run for public office. In 1999 I graduated law school and took my first job practicing law in Washington, DC. My first job was initially a difficult one because of the senior attorney I was working with, but as time went by I began to truly enjoy the practice of law. It clicked. And then April 10, 2008 happened. It was the day my cellphone rang, and on the other line I heard Neely say, “they found a mass on Alexis’ brain.” I was two and a half hours away at a deposition in Virginia and felt like I was stuck on the moon. I felt that far away. Alexis’ journey and fight lasted from that day until January 14, 2011. Along the way on this forced path something happened; I transformed into a childhood cancer advocate. Never would I have envisioned this part of the journey or this destination during the course of my life. I found a voice and purpose that I felt like people heard, supported and were willing to stand alongside. I felt like I was making a difference for children with cancer and their families, and it provided purpose from an otherwise purposeless and tragic experience. Alexis' journey is the journey of our family now.
Over the past two years I have struggled trying to balance the desire to become increasingly more engaged with childhood cancer work as well as maintaining the practice of law. It has not always worked and there have been specific periods of tension and struggle. There have been many trying professional times that have brought me close to the brink. I will continue to have to manage some of these over time. The experiences of the last five-plus years have brought me to the proverbial fork in the road on this journey. I have been very fortunate to have the support of Neely throughout, although I know that it has not been easy. Truth be told, I can be a very difficult and closed off person in many respects. I'm a work in progress as they say. With that said, I believe I am guided by Alexis’ journey, her inspiration and the passion that this experience has ignited. I simply cannot turn away from this fight at this time. It has been a quest to bring meaning to my life and be able to choose the right destination for this passion.
In November 2013 I was asked to attend a meeting on the lack of pediatric brain cancer drug development at the SNO Conference in San Francisco. After the meeting, at a cocktail reception, Charles Keller, MD (then from OHSU in Oregon) approached me to discuss his vision for shifting the paradigm for the stalled translation of childhood cancer research from lab to patient. Out of those conversations and the many months that ensued thereafter, a bold non-profit childhood cancer research laboratory was formed. The Children’s Cancer Therapy Development Institute, located in Fort Collins, Colorado (cc-TDI) for short, was created. www.cc-tdi.org. The lab holds one mission: to conduct the basic scientific research that will be utilized to prioritize new drugs that are initiated in clinical trials. The lab operates with the ability to work faster, cheaper and without the red tape that plagues the manner in which research is currently being done. More importantly, the lab will operate with transparency and accountability to the childhood cancer community ensuring that the research being done in the lab translates into the clinic with the ultimate goal of making childhood cancer universally survivable regardless of diagnosis. It is a bold mission. More needs to be done to provide effective and safe treatments for kids with cancer. And, more importantly, parents shouldn’t be left to hope that the blind darts being used to treat their children may potentially hit a target. cc-TDI is not a charity that puts on fundraising events to fund research. Rather, it is a non-profit; IRS recognized 501(c)(3) tax-exempt laboratory actually doing the research. The lab depends on the philanthropic generosity of individuals and foundations alike.
So here goes; a not so humble ask. If you have the ability to help us financially in our mission at this critical time by heading to our website (www.cc-tdi.org) and clicking donate, any amount is more than appreciated. (you can do so in time to receive one more tax write off for 2014). I know we’ve come to everyone in the past for this type of support, and thus I want to be respectful of all the different requests that people receive. There are so many amazing people out there and incredible organizations involved in this fight and I’m humbled that we are a small part of this community. Thank you does not seem sufficient. If anyone would like to learn more or learn about how you can become involved, please just say the word.
And so, I turn the page from 2014, which in many respects was one of the most challenging, trying and difficult years of my life, outside of 2011 of course, and head into 2015 with renewed hope and increased fear at the same time. Hope that other parents who hear the same words that Neely and I heard in 2008 do not experience the same outcome. Hope that there is purpose from the most devastating moments of our lives. Fear that as I work to engage more deeply with making childhood cancer work my focus that the challenges will be too great to overcome.
We come to difficult moments in our lives. We will mark 4 years since that horrible day when Alexis passed away. As January looms large, the days begin to weigh upon us. I simply cannot wrap my head around this fact. It seems so distant and removed, and frankly, my memory is working against me at this juncture. Alexis is always on my mind, but so many of the experiences are fading.
And so, as each day passes, we are taken one day further, yet one day closer to Alexis. Soon baby, soon. I'll try and write a less formal update on how we are all doing shortly. I do miss writing here....
Jon, Neely, Alexis, Gabe and Trevor