Today I speak with Susan, founder of OPAAC (Ontario Parents Advocating for Childhood Cancer), about the development of parent-led advocacy in pediatric oncology. Susan shares how her daughter’s diagnosis in 1995 led to her becoming a parent liaison at SickKids Hospital and eventually establishing OPAAC in 1997. Today, it remains the only parent-led childhood cancer advocacy organization of its kind in Ontario.

Our conversation explores how advocacy often begins with lived experience and evolves into structured, system-level engagement. Susan explains the difference between “Big A” advocacy — policy work, formal partnerships, and participation in hospital decision-making — and “Little a” advocacy, which includes peer support, attending appointments with parents, and staying connected to families during and after treatment.

We talk about why parents can feel overlooked within the healthcare system, how support needs change significantly once treatment ends, and why relationship-building with healthcare teams is essential for sustainable change. The episode offers a practical look at how parents can move from emotional response to effective advocacy, and how organizations like OPAAC create meaningful support for families across the treatment continuum.

You can find out more about Susan and OPACC here: https://www.opacc.org/

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Today I'm privileged to chat with Recreational Therapist and owner of Flow Recreation Therapy and Consulting, Danielle Scarlett, about the hard conversations no parent wants to have with their children. We work through every topic from how to tell our kids they have cancer, what to say when something is going to hurt, how to approach end of life conversations, and what to do when there are simply no words. Danielle shares practical guidance for starting these conversations in age-appropriate ways, inviting children into an open dialogue, and allowing space for uncertainty and emotion—both the child’s and the parent’s. From the power of saying “I don’t know” to the important distinction between "protecting" versus "supporting", this episode offers reassurance that there is no perfect script—only presence, honesty, and the willingness to keep the conversation going as children and parents process their cancer diagnosis together.

You can find Danielle here https://flowrecreationtherapy.ca/

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I absolutely adore my guest today, Kirsten — and I know you’re going to feel the same way. Kirsten is a three-time childhood and young adult cancer survivor with so much honesty and insight to share about what survivorship really feels like.

Kirsten was first diagnosed with ALL at age 10, spending more than six years in treatment after a relapse — during the years when kids are learning how to make friends, belong, and be themselves. Finishing treatment didn’t mean life snapped back into place. Survivorship brought its own challenges, especially around reintegration, social development, and finding her footing after missing so much of childhood.

Later, in her 20s, Kirsten faced cancer again — this time during young adulthood, another critical stage of identity and growth. In this conversation, we talk openly about fear, uncertainty, stigma, bullying, and the long emotional tail of childhood cancer.

What makes Kirsten so special is how real she is about all of it — and how she’s used her experience to pave the way not just for herself, but for the survivors coming behind her. For parents, this episode offers a powerful glimpse into what survivorship can look like long after treatment ends.

Hosted on Acast. See acast.com/privacy for more information.