Huffpost Impact
THE BLOG

Featuring fresh takes and real-time analysis from HuffPost's signature lineup of contributors

Jonathan Agin Headshot

Hope and Inspiration From Loss

Posted: Updated:
CHILDHOOD CANCER
Alamy
Print

January is a difficult time of year for my wife and I. Two years ago, as the world celebrated the coming of 2011, we sat quietly with our daughter Alexis in her pink colored room as cancer slowly stole her from us. We held vigil in her room, surrounded by family and friends, beginning in December 2010 and would continue until 3:04 p.m. on January 14, 2011. Silently and quietly, Alexis chose that this was the time her battle would end. January also marks Alexis' birthday. January 31, 2013 will mark what should have been her earthly seventh year birthday. Both dates will bring emotion and pain. That probably is something that does not need to be stated. We will mark these dates differently. Alexis transcended her small presence here on earth and became much more to me. She became an inspiration, she became a hero. She became a road map of how to live. I am forever thankful for the lessons that I have learned from my amazing daughter.

And that, the inspiration and hope, is truly what I want the world to be able to take from Alexis' presence here on earth. I am truly sad at losing my only daughter, the pain is constant and difficult to process both mentally and physically. However, that is not the story to be told to the world. It is something dramatically different. It is one of hope. It is one of life and living. And her illness is and should be a rally cry that our children with cancer deserve much better.

When Alexis was first diagnosed with an inoperable brain tumor, we spent the most horrific two days and nights in the hospital. I recall sitting in a heap on the floor in one of the sterile hospital hallways at four in the morning, tears streaming down my face, thinking that the pediatric oncology ward was literally hell on earth. It was truly the first time I was in close proximity to gaunt, bald, yellow-faced children with toxic substances dripping into their veins. It was an eye-opening experience that I will never forget. As the weeks went on, and our visits to the hospital increased, I had a life-altering epiphany. These children were the strongest people on the face of the earth. Etched on my mind to this day is the image of a young girl, no older than seven or eight years old, bald, emaciated, pasty white, doing laps around the pediatric oncology ward wearing a pink tutu. As each lap was completed, a nurse ticked off another mark on a board. She danced through the halls like a ballerina. Lithe, and amazing in so many ways, and with a smile on her face, she made me see that hope existed again. From that moment on, I saw that heroes truly do exist here on earth.

As Alexis battled and her journey grew long, she did so with a dignity and resilience that underscores the amazing nature of children with cancer. There are so many instances of horrible acts across the world that these children deserve more notice to provide hope. And with that hope needs to be more outrage that we are not providing more research funding and support for childhood cancer. This is the true tragedy here. We fail to value children, and thus, for the vast majority of our children fighting cancer we send them to battle with outdated and barbaric treatments that in the end cause more harm than good. That is a tragedy.

The day before April 10, 2008, I had no concern about childhood cancer. It spent no time or existence in my house. I was aware, but I believed it could never happen in my house, or so I thought. Of course, hindsight sadistically proved to me that I could not have been more wrong. For the vast majority of the people in the country, childhood cancer occupies little of the collective conscious of their being. It is an amorphous concept. The world travels at a fast pace and childhood cancer generally only stops the "lucky" few in their tracks when it knocks on their door.

The takeaway from this story is simple -- awareness is ever so critical. Childhood cancer is not rare, it is not some far-off disease that strikes the third-world. It is a neighbor that may inhabit the house next door, it may come to reside with you some day. Awareness of the plight of these amazing children will inevitably provide new opportunities for researchers to focus on a cure, and more importantly, more outcry to our politicians to change the federal research landscape that provides pennies on the dollar for childhood cancer research.

On January 14, 2013, I will be acutely aware of the toll that childhood cancer takes. I will be aware, as I am each and every day, that childhood cancer is a killer. It is a thief that never takes a vacation and knows no boundaries. On January 31, 2013, I will make my way to the Capitol Building and watch with pride as a flag is flown above the building to honor my amazing daughter, her impact and journey. There is hope and inspiration from loss. There is a message of hope in each and every child and family who hears some of the worst words in the English language, "your child has cancer." There is honor in making everyone aware of these heroes.