Childhood Cancer: Advocacy is NOT Optional

When your child is diagnosed with cancer, advocacy is not a choice – it is survival.

“I became an advocate the day my daughter was diagnosed,” says Adrienne Co-Dyre, a parent whose voice has since become a rallying call for change. “If I hadn’t demanded emergency care, she wouldn’t have lived another 48 hours.”

For Dawn Pickering, advocacy began even earlier. “I knew something was wrong with my son, but we kept being told it was nothing. If I hadn’t pushed for a referral, we never would have found his cancer in time.”

Stories like these are far from rare. Across Canada, parents are often the first and sometimes only line of defence when it comes to recognizing symptoms, demanding urgent care, and navigating a complex medical system. Advocacy, in many cases, is what gets children through the system alive.

But survival is only the beginning.

In Canada, approximately 1,500 children and adolescents are diagnosed with pediatric cancer each year. One in five children with cancer do not survive the disease. And for the 80% who do, survival often comes at a steep cost. Many live with lifelong side effects – neuropathy, vision loss, organ damage, hearing loss, limb loss, cognitive delays and learning difficulties, and secondary illnesses caused by treatments originally designed for adults. Families, too, carry invisible wounds like post-traumatic stress disorder, anxiety disorder, financial strain, fractured routines, and the constant fear of relapse.

“Survivorship is its own battle,” Dawn explains. “My son lost his vision during treatment. He lives with the side effects every day. Families like ours need support to make sure our kids not only survive – but thrive.”

Despite these realities, pediatric cancer in Canada remains in need of dedicated support. Families are often forced to advocate not only for treatment, but also for survivorship care, school accommodations, mental health support, and long-term follow-up services that should be an automatic next step – but rarely are.

Advocacy often takes two forms: personal and public. Most families begin with personal advocacy – sharing their stories online, organizing fundraisers, or connecting with other parents navigating the same journey. These individual efforts are powerful; they create community, hope, and resilience in the face of isolation.

Over time, many parents and survivors turn their pain into purpose, realizing that their struggles mirror those of countless others. They use their hard-won knowledge to guide new families, to educate the public, and to demand systemic change, ensuring that no parent fights alone. Every action, no matter the size, contributes to a culture that values children’s health and recognizes that survival is not the ultimate finish line. ACCESS is a direct result of advocacy by several hundred families directly impacted by pediatric cancer, along with researchers, clinicians, and partner organizations. The collective goal is for enhanced, coordinated childhood cancer research and care in Canada.

There are several organisations that are working on research and care but there is still a critical need for a national pediatric cancer strategy that will bring all these pieces together to form a streamlined, yet robust national system designed to remove interprovincial barriers and improve the health care outcomes of all children with cancer in Canada. ACCESS is leading this effort to bring together survivors, families, clinicians, researchers and partners to identify gaps in research and care and push for solutions.

“We realized we were all working on the same problems,” Adrienne says. “ACCESS gives us a collective voice so we can finally change the system together and give our collective passion a concrete direction.”

Policymakers, educators, healthcare leaders, and everyday Canadians all have a role to play. Pediatric cancer must be seen for what it truly is – a national crisis that demands attention, funding, and action.

“Advocacy saved my daughter’s life,” Adrienne reflects. “It’s what will save the children diagnosed tomorrow.” Advocacy does more than raise awareness – it changes outcomes. It drives research for safer, child-focused treatments and better access to crucial clinical trials. It ensures schools understand how to support kids returning after months of isolation. It pushes governments to fund follow-up care and mental health programs for survivors and families.

The fight against childhood cancer doesn’t end at survival – it ends when every child has the care, support, and future they deserve. Advocacy is an important part of how we get there.

 

Want to help support the cause?

> Raise Awareness
Share pediatric cancer facts and advocacy messages on your social media channels. Use the information available on the Stronger Than cancer site with your networks and spark conversation.

> Contact Your Member of Parliament
Use the advocacy guides provided to reach out directly to your MP. A few minutes of your time can influence decisions that affect countless children and families.

> Learn More About ACCESS
At ACCESS, we are working to break down barriers so kids and families get access to the best scientific advancements, support and treatments.