Each year, jurisdictions across North America recognize September as Childhood Cancer Awareness Month. Last year, both the CN Tower and Niagara Falls were lit up in gold, and children across Ontario chalked up their schools to mark this important event, thanks to our friends at POGO (the Pediatric Oncology Group of Ontario) and Crayola.
The facts about childhood cancer in North America are shocking:
- 15,000 children are diagnosed with cancer and approximately 45,000 children are in active treatment each year;
- Pediatric cancers are not preventable and do not result from lifestyle choices;
- While about one in four children who are diagnosed with cancer will die of the disease, survival rates are much less promising for several common childhood cancers;
- Many childhood cancers are difficult to detect, and are only diagnosed after the cancers have formed and metastasized;
- The American FDA has approved only one new childhood cancer drug in the past 20 years;
- Childhood cancers are the leading cause of death by disease in children. The average age of death for a child with cancer is 8, causing a child to lose 69 years of expected life; and,
- Cancer treatments can affect a child’s growth, brain development, fertility and endocrine system, as well as secondary cancers.
As a mom of a childhood cancer survivor, I know these stats too well. They horrified me when my newborn daughter was born with neuroblastoma, with a golf ball sized tumour attached to her adrenal gland. Neuroblastoma is the most common cancer for infants and when diagnosed after the age of 18 months, many of them face only a 30% 5-year survival rate.
Almost overnight my husband and I were forced to become experts to understand the nature of the disease, our oncologist’s plans to eliminate it, and how we would parent our first child in this environment. I spent my maternity leave in and out of SickKids hospital, doing my best to normalize life for our daughter, notwithstanding the constant pokes, needles, CT scans, MRIs, MIBGs and chemotherapy sessions. Somewhere we have the bravery beads to prove it.
Thankfully, my daughter is now a happy and healthy 9 year old and has no recollection of the impact that the disease had on her early years. Many children in our neuroblastoma community have not been so lucky, and my heart has broken each and every time I have heard of a child’s relapse or untimely death.
Beyond the survival rates, there are so many pieces of this puzzle that are simply unacceptable to me. I still can’t believe that common treatments for childhood cancer were all initially developed with adults in mind and then adjusted for little bodies. I also can’t believe that in order to kill cancer cells we need to damage so much of what is working in these kids’ bodies including their immune systems, hearing, heart and brain functioning and reproductive systems. I also get frustrated on a regular basis when I see pink ribbons everywhere, when there are so many other important causes that need our charitable support.
As a self-professed “doer”, I needed to take action to help improve the odds for children faced with neuroblastoma. When Lilah was still in treatment, we started Lilah’s Fund at SickKids Foundation, which raises much needed funds for neuroblastoma researchers at SickKids. As a result of our research and other family foundations, new drugs are now being used in clinical trials for children who would otherwise have no other options.
Please join me in recognizing September as Childhood Cancer Awareness Month, and help us spread awareness of neuroblastoma and other devastating childhood cancers.
Tami Moscoe is a Co-Chair of Lilah’s Fund at SickKids, a charity that has raised $700,000 so far to fund fast-tracked neuroblastoma research. She is mom to nb survivor Lilah and her little brother Micah, a member of the newly established Neuroblastoma Consortium, and an occasional volunteer for the Pediatric Oncology Group of Ontario (POGO). In her spare time, Tami works as counsel for the Office of the Chief Justice of the Superior Court of Justice in Ontario.