September is my favorite month for a lot of reasons: several family birthdays, fall and pumpkin everything, boots and leggings. But it is also . . .
Childhood Cancer Awareness Month.
30 days of gold ribbons.
30 days of fundraisers for cancer research.
30 days of awareness posts on social media.
30 days to extra-celebrate the little bald-headed warriors that walk the halls of the hospital.
As a pediatric oncology nurse, September is a glaring reminder of how far we have to go in the world of kids with cancer. It’s not rare.
After accidents and trauma, childhood cancer is the leading cause of death in children ages 1-14. One in 285 children will be diagnosed with a pediatric cancer in their lifetime. About 5% of pediatric cancers occur in patients with genetic mutations or cancer predisposition syndromes, such as Li Fraumini Syndrome, but the vast majority of cases cannot be traced to a single cause. (See this fact sheet.) It can affect a child of any age, race, gender, or socio-economic status. Childhood cancer knows no boundaries, and it has no rules. The most staggering statistic, to me, is that on any given day 43 children will be diagnosed with cancer. FORTY-THREE KIDS. PER DAY.
Signs and symptoms of pediatric cancer are as varied and diverse as the different pediatric cancers that are possible. Leukemia is the most common childhood cancer, making up approximately 29% of pediatric cancer diagnoses per year, followed by brain and central nervous system tumors, then soft tissue sarcomas and lymphoma. Treatment for childhood cancers traditionally have included a combination of chemotherapy, surgery, and radiation. Recently, newer treatments have been in the national news outlets, such as the use of genetically engineered immune cells to fight for multiple relapsed leukemia patients. These therapies that target specific genetic mutations are the wave of the future, and so far, things seem pretty promising. Locally in Birmingham, there is a novel new brain tumor study using a genetically engineered virus injected directly into the tumor that is giving hope to those patients who were told they had none.
However, even in light of these staggering statistics about childhood cancer, it is a group of diseases in which research is vastly underfunded. Less than 4% of the total budget of the National Cancer Institute goes towards researching cures for pediatric cancer. I believe everyone would agree that our children are worth far more than just 4%. In the past 30 years, only three drugs have been developed specifically to treat pediatric cancer. And it’s not just cancer treatment that we need to research. Hundreds of thousands of children survive childhood cancer and live into adulthood dealing with the aftermath of the treatments they had to endure. One statistic says that 95% of adults that were treated for childhood cancer have at least one major health issue by the time they reach 45 years old. Among others, The Children’s Oncology Group is a worldwide organization of over 200 healthcare institutions that develop and participate in pediatric oncology cancer trials. Currently, pediatric cancers have a combined overall survival of approximately 80%, thanks to years of research and treatment efforts by dozens of organizations focused solely on curing childhood cancer.
We as providers to these children are often asked how we can possibly take care of children with cancer. How do we cope with the child with a new diagnosis who is terrified of needles? The nerves of scan day? The heartbreak of relapse? The overwhelming sadness of changing from curative treatment to end-of-life care? But the real question, for me at least, is how can we not? You have not seen bravery and resilience like that of a child who receives chemotherapy, throws up lunch, then goes to the activity room to participate in bingo like nothing even happened. There is no greater, more privileged place than to be by the side of a family as they receive horrible news and to hold them up through it. We go home and cry for those babies at night and put on a happy face the next day as we keep pushing on. The good days outweigh the bad. We get to watch “our” kids grow up before our eyes after winning battles that many adults couldn’t even fathom.
But we couldn’t do this work if there weren’t the promise that things will one day get better. Research and breakthroughs, no matter how small, fuel our fire to improve outcomes for kids with cancer. Everyone in our field has a passion and heart for the bald kiddos who come through our doors; from the physicians to the registration personnel, the nurses to the housekeepers. We pray for the day when our specialty is no longer needed, but until then, September will be OUR 30 days.
30 days of our battle cry.
30 (more) days of research.
30 days of awareness of pediatric cancer.