We Need to Say Goodbye to Cancer, Instead of Our Children

 

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.

Every September, I fill my Facebook posts with statistics to educate and infuriate my friends. Why would anyone choose to infuriate their friends? Because in order for change to happen, there needs to be awareness. Awareness of the lack of funding. Understanding that what we’re doing is not enough. Posts have included such things as:

• 43 children are diagnosed with cancer every day in the U.S.
• Worldwide, a child is diagnosed with cancer every three seconds
• In the past 25 years, only TWO drugs have been developed specifically for children
• Most cancer drugs were developed for adults and are just given to children in smaller doses
• More than 95% of childhood cancer survivors will have a chronic health problem as result of their treatment and 80% will have severe or life-threatening conditions
• About 60% of all funding for drug development in adult cancers comes from pharmaceutical companies. For children – almost none. There isn’t enough PROFIT to be made because pediatric cancers make up less than 1% of all cancer diagnoses.
• Nearly 2,000 children die of cancer every year in the U.S.

Working in pediatric oncology has its ups and downs. Thankfully we have way more ups. People ask how we can do it. We reply, “How can we not?” Do deaths ever get any easier? Absolutely not.Do we ever know the right words to say? How can we? Are there ever any words that can take away the haunting emptiness that comes from losing a child? I don’t think so. We can only be there for the families, sharing in the laughter as we remember those stories that make us laugh, but eventually always lead us back to tears. We can share in those tears. We can help them know that they did EVERYTHING they possibly could and that we are always here if they need to reach out. We can pray for them as they muddle through the days, weeks, months and years trying to understand who they are when their lives are no longer consumed by cancer and its treatment.

Unless you have lived it, no one can know what it’s like to live daily with the worry of white counts and platelet counts, germs, infections, fevers, fear of relapse, repeat scans, lab draws, and doctor’s appointments. No one can understand how much cancer affects the entire family; the brothers and sisters who can sometimes feel “left behind,” the unexpected financial stress that comes with treatment (gas expenses of traveling to and from, hotel and food expenses, additional daycare fees for other kids, co-pays and more), having to quit a job or cut back to part-time because of the incredible amount of time needed to care for your child, the financial burden that results in having to suddenly have a reduced income, the strain that a cancer diagnosis can put on even the most solid of marriages/relationships, the unexpected hospital admissions, the family plans that often have to be canceled weeks in advance or even minutes before, the “I love yous” that have to come through the phone instead of in person, because you’re at the hospital instead of at home… the guilt that can accompany that as well.

We dream of a day when cancer no longer exists and pray that it comes sooner rather than later. We long for the days when no parent will ever have to hear the words, “I’m sorry, but your child has cancer.”