In the early morning hours of January 14, 2011 my 4-year-old daughter Alexis appeared different. Her breathing had changed. It was shallow, forced and audible. In retrospect there were other subtle changes that now make sense given what was occurring. Shortly after 3:00 pm on Friday January 14, 2011, after being on hospice care in her home since October 2010, Alexis' bedroom grew silent as we witnessed her small chest grow still.
In April 2008, at 27 months old, Alexis was diagnosed with DIPG, an inoperable and almost universally fatal brain cancer. During her long fight, she demonstrated a sublime dignity and character that I did not fully grasp until several months after her death. Over the course of the next 5 years that have now unfolded, I have come to view my daughter's death as a transformative gift in many respects. This statement should not be mistaken to mean the fact that Alexis actually died is a gift. Rather, the journey she guided me towards that unfolded before my eyes, her legacy, and the hard fought perspective I live with is the gift.
When Alexis was diagnosed, I was a partner in a law firm that I formed with two other partners. I defended insurance companies and their policyholders against all forms of civil litigation. I was a trial lawyer. In fact, I was a damn good trial lawyer. Despite the fact that my partners had more conflicts with each other than I could count, I can safely state that I was one of a small population of truly happy practicing lawyers in Washington, DC. After that fateful day in April 2008 when we learned that Alexis was marked for death, I immediately pulled back from my practice and was supported by my family as well as my partners and clients alike. I never missed a medical appointment, treatment, MRI or clinic visit. The singular purpose that our family operated upon was to be there for Alexis and normalize her life as best as we could in what was a very abnormal world for a small child. At the end of the day, I can safely say that our efforts achieved this goal.
Fast-forward to March 2011, two months after Alexis died, and I attempted to find my trial legs and focus on being the best trial lawyer I could be. By that time, my law firm was not the same as I left it as one of my partners moved on. I decided to stick it out in hopes that I would rediscover my zeal for the law, and more importantly, I had no idea where my own journey was leading me. Many days were spent in front of a blank computer staring at simple darkness as my mind focused only upon Alexis and childhood cancer. My former professional life was quickly moving forward without me, and frankly, I was moving as well. Daily, I was disengaging with the profession that I once truly enjoyed. Small talk, discussions regarding the latest Supreme Court cases and trying to convince new insurance carriers why my firm should handle their business felt a lot like having a cavity drilled. Unable to find a common connection with colleagues and clients alike, I struggled to create meaning and income within my law firm that also allowed me to earn a living working in the childhood cancer space.
Childhood cancer consumed me. Oftentimes, as I devoted ever-increasing time to this passion, I thought of little else outside of this world besides my family. Whether I knew it or not, I was fundamentally changed forever and had little ability to return to my previous professional existence. This journey of professional and personal renaissance unfolded over the course of three and a half very difficult and challenging years. Those years, from March 2011 until January 2015, and beyond, brought me to the brink on many occasions. Challenges with business partners, internal struggles and the inability to launch several new ventures tested every ounce of my fabric. A combination of hard work, a perfectly matched skill set, dedication, support, the good fortune of my life circumstances, and most importantly luck, combined together allowing this transition and growth. Every day, through my work as the General Counsel and Institutional Officer for the Children's Cancer Therapy Development Institute (www.cc-TDI.org) and the Executive Director of the Max Cure Foundation (www.maxcurefoundation.org), I am able to tell Alexis' story, honor her fight and live her legacy in an authentic manner. Never have I experienced such immense professional satisfaction.
Through my journey, I have embraced the idea that perspective is life altering. Perspective allows us to step back and understand clearly that life challenges do not need to break us as human beings. Rather, as the waves pound us from every direction, there is purpose in standing strong and rising again and again. Before Alexis died, I lost my older sister Gina as a result of a single vehicle accident. After I had the excruciating task of convincing my parents to remove my sister from life support, I sought to find purpose and direction as a result of her death. Ultimately, life got in the way of life. Enter Alexis. Experiencing life for thirty-three months with a child who never lived to be 5, who died of cancer in front of my eyes, and who showed me how to live each day while dying presented me with the perspective and courage to come to this rebirth. My professional metamorphosis and life direction since January 2011 have been painful, and many moments have brought me to my knees, but in the end it is the backdrop of Alexis' death that has provided me with the opportunities to find significant fulfillment and contentment.
In the end, of course I would trade everything to have Alexis with us again. At the risk of failing to make this statement, I always operate with the understanding that this is a given. Unfortunately, I have no ability to change time, and I am not capable of changing the course of history for either of us. Our destinies became inextricably woven together. Our stories were crafted by fate, a zest for life and ultimately, hard earned perspective. Alexis inspired me never to accept no for an answer in the pursuit of this destiny. She danced at hospitals where doctors and nurses treating her knew she was marked for death. And though she may have been young, she never once complained about a doctor's visit, treatment or the need for surgery. Consequently, when someone asks me about life and my professional path, I inevitably make the peculiar statement that Alexis' death provided me with one of the greatest gifts of my life. The fact that she died is not a gift. The life lesson taught as a result of her death, and the choice I made to understand and embrace this perspective; that is the gift. Without this experience, I am certain I would never find such perspective or contentment. We will all find ourselves at the point in our lives where two roads diverge. Sometimes that opportunity presents itself on multiple occasions. The path we choose and the perspective we utilize as a guide for the rest of our lives, well that of course will make all the difference. Thank you Alexis. Your life stands as a gift to me of immeasurable proportion.