I originally wrote this soon after Ben's journey ended in 2009. I rediscovered it in 2012 and I rewrote it a little. I just came across it again and fixed a few grammatical errors. It sums up why I will continue to support St Baldrick's until the day it is either no longer necessary or until I join Ben. Even with the wonderful work being done. The statistic has not changed. Thank you for supporting me, my son James, Ben's Green Drakkoman Team, Ben's Green Drakkoman Hero Fund, and/or St Baldrick's. If you've found these words I am sure you are with us in the fight to find treatments that work against childhood cancers.
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Every day the statistics say that 7 children will die from pediatric cancer. In that statement there are little lies. Is a baby a child? Is the rare adult included? At what age does a child become and adult, a young adult? Where are the teenagers? Does this statistic include the death certificates that list the cause of death as BONE cancer instead of osteosarcoma or brain cancer instead of medulloblastoma? Does it include the death certificates that don't even mention cancer at all - asphyxiation, pulmonary edima, heart failure? Osteosarcoma didn't kill my son directly. Many pediatric cancers don't kill directly. They wear the body down until organs fail. The cause of death on my sons death certificate reads "Complications from osteosarcoma." It presented itself as tumor in his upper arm and was removed. It then reared it's ugly head in a lymph node and was removed. It next showed up in his lungs. Tumor after tumor showed up in his lungs. Each time the tumors were removed in groups. Each time a little more healthy lung was removed along with the tumor. Chemotherapy was pumped into his body to slow the spread of the osteosarcoma. At the age of 9 my little boy was approaching the lifetime maximum dosage of radiation and some of the drugs he was receiving. The tumors returned, wave after wave. It would seem like the flood waters were receding and then another wave would hit his little body. I recall being told at one point that there were too many tumors in his lungs to count so they couldn't operate. The chemotherapy was pumped into him in greater quantities and the tumors shrank and now he could be operated on. The surgeons were meticulous in trying to remove every one. The chemo was working. A new trial drug was started. The chemo was working. At 3 months the scans were good - no new tumors. As the next round of images were taken the tumors were back. They were back in greater quantity than before. It was almost as if they had become resistant to the chemotherapy he was receiving, almost feeding off of it. There was nothing else to do. All options had been exhausted. Internet searches revealed no new alternatives. The best researchers, doctors and surgeons were consulted. At the age of 9 my little boy walked out of a hospital for the last time with a demon inside him that no doctor could remove. Over the next 6 weeks we would have wonderful life experiences. There would be laughter and joy. Every day became a miracle. Every day the statistics say that 7 children will die from pediatric cancer. Before my son was diagnosed with osteosarcoma I was unaware of this statistic. I did not understand the reality of the risk my children faced. Like most parents I was afraid of the wrong things. I heard about stranger danger. I made sure our house was childproofed and that my son and his twin brother had the saest cribs, highchairs and car seats. What I did not know was that more children die from osteosarcoma than from accidents relating to cribs and high chairs. I did not know that there was something besides drunk drivers to fear. I had heard that statistically the most dangerous person in a child's life is his father. Since I had that covered my boys would be okay. I did not think about my child's body turning on itself. I did not know the statistics surrounding pediatric cancer. I did not know how devastating the number 7 could be. I do now. I have been to as many funerals and wakes for children as I have for adults. Every week it seems that I learn of another child who has left their parents behind. I will never forget the night on the pediatric oncology floor that death showed itself to me. The floor was usually buzzing with activity. There was always a noise - machines beeping, sounds of movement, people talking in other rooms, TVs, conversations in the hallway or at the nurses station. It was in the wee hours of the morning and my son was asleep. Suddenly I realized that something was different. outside of the sound of his chemo pump and the clicking of the keys on my laptop the floor had gone silent. There was something different in the atmosphere. One of the nurses walked past our room and quicklyclosed the door silently. The was a stillness on the floor. A little while latter a bed went by our room with a mom and a dad walking behind it, holding each other. It was followed by a couple of other people, I assume friends and family, pushing a wheelchair with their belongings on it. The little child was wrapped in a quilts and I could make out the shape of a child. Time slowed down and the look on her parents faces told the story to me. I sat and quietly sobbed. The world had lost a gift of great potential that night. I looked at my son and the immediate thought that came to my mind was, "Ben, you are going to beat this thing. You are going to beat the osteosarcoma." I knew in my heart that it would be true. Every day the statistics say that 7 children will die from pediatric cancer. I did not know that almost 3 years later I would be proven wrong. On that day in October my child would become one of those 7 children.
