Childhood Cancer Awareness Month is a time when we strive to heighten awareness, but I’d like to share with you why it is so very important. This September brought much sadness to our team at Nebraska Medicine, as we said goodbye to three kids who lost their battles in the first week of Childhood Cancer Awareness Month. These three all fought valiantly and without complaint – for years. Their families talked about how they never asked, “why me”… they only continued to fight and live their lives with cancer. Each of these kids shows us why research dollars are so important.
Our first warrior was 24-years-old. Why was he a pediatric patient? Because his journey began 13 years earlier and he had “a cancer that just wouldn’t go away.” He died three days after his 24th birthday. He made the choice, at the age of 24, to take control and not seek any more treatment, as it would have not been curative. He had done surgeries, chemo, radiation, radiation, and then some more radiation throughout his battle. He decided that he wanted to control how he left this earth… spending his last days with friends and family, laughing and loving. This is exactly how he died – the same way he had lived – laughing and loving. I had originally met him at Camp CoHoLo (local camp for kids with cancer and blood disorders). I knew him as an amazing young man with the gentlest heart who treated everyone with compassion and loved to make people laugh. I watched as his brain tumor changed his physical appearance and altered some of his mental abilities, but what did not change was his sense of humor, his love of and compassion for people, and his amazing spirit. He donated his brain to be studied, “so that no one else will have to go through what I went through.”
Our second warrior was 13 and she died a few days before her 14th birthday. Her battle began in the second grade. Her treatment included chemo, radiation and a bone marrow transplant, which was successful at curing her initial cancer. Unfortunately, sometimes the treatment that is used to cure cancer can sometimes cause a different cancer and this is what happened to her. She developed a totally DIFFERENT cancer that was actually caused by the very treatment she received to cure her initial cancer. Her most recent battle lasted more than a year. If you don’t know anything about bone cancer, it causes excruciating pain and can be extremely difficult to manage with medication. Through it all, she filled her life doing as many of the normal teenage things as she could and inspired everyone around her.
Our third warrior was 17-years-old. He was first diagnosed at the age of eight. He relapsed at the age of 11 and received a bone marrow transplant. Although his cancer was eventually “cured,” he suffered from devastating side effects from his treatment. You see, he did not die from cancer, he died from those devastating side effects that destroyed his body until it could no longer sustain. If you ever had the pleasure of meeting him, you’d have thought he was perhaps eight or nine years old, because his growth had been stunted due to the drugs that killed the cancer cells. Much of the time, you’d have also thought he had some strange skin disease and perhaps would have feared that he was contagious. However, had you had the opportunity to talk with him, you’d have seen that he was a young man wise WELL beyond his years. He had this delightful sense of humor, a gentle soul and was always thinking of others. He was a man who accepted whatever God had given him and was grateful. He never complained about his life or his disease or about how all he really wanted to do was to just be like everyone else. He was never angry when his mom had to lift him out of bed into his wheelchair, or rub his legs when he had horrible leg cramps, or when he had to be pushed in his wheelchair by family or friends. He accepted his life and was grateful. He had the opportunity to attend World Youth Day in Poland this July and was able to make eye contact and exchange smiles with Pope Francis.
Only 4% of U.S. federal cancer research funding is dedicated solely to childhood cancer research. Then again, pediatric cancers make up less than 1% of all cancer diagnoses, so that’s fair, right? Think again. Let’s look at it from a different perspective; let’s look at it in terms of the number of years of life lost. The average age of an adult diagnosed with cancer is 66 and because the average life expectancy is 77, the number of years of life lost for an adult is 11. Meaning, on average, if they lose their battle right away, they would lose 11 years of their life. The average of a child diagnosed with cancer is 6-years-old. If we apply that same principle with the average life expectancy of 77, the number of years of life lost for a child, is 71 years. Meaning, on average, if a child loses that battle right away, they would lose 71 years of their life.