September slipped by too quickly, ushering in fall. It used to be my favourite month of the year, not only because it’s my birthday, but for the sense of change it brought. Now, however, it carries unimaginable weight. September is National Childhood Cancer Awareness Month—something most people don’t realize unless they’ve been personally touched by Childhood Cancer.
I was one of those people too, until my 2-year-old son was diagnosed with AT/RT (atypical teratoid rhabdoid tumour)—an aggressive grade 4 brain cancer. He did not survive, despite bravely enduring a 16-month long treatment that included multiple surgeries, chemotherapy, and radiotherapy. The best doctors across Canada and the US had “no cure” for this monster of a disease.
No cure? Even today? Despite scientific advancements in all spheres of life? We have sent people to the moon and beyond, created AI chatbots, and developed house-building 3-D printers—yet we cannot find a way to control a mass of fast-growing cells? Why?
Because it is unprofitable. Neither the government nor the pharmaceutical industry invest in research, innovative medications, nor clinical trials for these “rare” childhood cancers—despite these cancers being the number one disease causing childhood death.
Over 1,700 children and adolescents are diagnosed with cancer in Canada every year[1]. The most common types of cancer diagnosed in children are leukemias, brain and other central nervous system (CNS) tumours, and lymphomas[2]. Of these, brain tumours are the leading cause of solid-cancer death among children[3]. Despite this severity, childhood cancer research is historically underfunded, only comprising 7% of all cancer research funding[4].
These numbers clearly highlight childhood cancer is not rare. Certainly not when you consider the families affected by it in unimaginable ways!
Childhood cancers are biologically unique and need focused research, precision medicine, and targeted therapies. They need gentler treatments. Children who survive cancer are often left with long-term side effects resulting from devastating chemotherapy and radiotherapy treatments. Hearing loss, cognitive delays, fertility issues—just to name a few. Over the years, only a few medications have been approved specifically for childhood cancer: more often medications are adapted from ones intended for adult patients. Furthermore, Canada takes 7 years longer than the US or Europe to approve drugs for rare diseases, with only 60% of these treatments reaching us[5]. Isn’t this delay unacceptable? It deprives our children of access to newer treatments that could potentially save and/or improve their lives.
Our system is not serving our children well. We need more childhood cancer awareness. We need more research funding. We need to research the causes of these childhood cancers, most of which are still medical mysteries[6].
Currently, families affected by childhood cancer are playing a vital role in collecting funds for research. But they can’t do it alone. We need more voices, more advocacy, more effort.
Spread the word! Donate to your local hospital foundation or us. Write to your local political representative demanding action. Let’s do something! Our children deserve a cancer-free future.
Neha Bhatnagar