The Deep C

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.
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Recent research published in a pediatric journal confirms what cancer parents already know: the psychological impact of childhood cancer often lives longer and deeper in parents than in the children themselves. Anxiety, post-traumatic stress, and grief don’t end when treatment ends—they shape how parents live, who we become, and how we move through the world.

While we don’t need academic validation—because cancer parents already witness and confirm this truth for one another—it matters to see caregivers finally centered in research. That essential peer recognition is what led me to today’s guests.

Jon and Jenn Wall are the founders of Zach’s Bridge, a 1:1 virtual peer support program for advanced and bereaved pediatric cancer parents and caregivers. When their 16-year-old son Zach was in palliative care for osteosarcoma—a phase they call pre-bereavement—they longed to speak with other parents who had already been there. Not professionals, but peers. Parents who had planned funerals. Parents who had come home to empty bedrooms.

Those sacred conversations became the foundation of Zach’s Bridge—a place where families navigating pre-bereavement and bereavement can speak freely, honestly, and without translation.

In this episode, Jon and Jenn share how partners grieve differently and extend grace to one another, how community can help carry the weight of loss, and a powerful coping framework Jon calls Both/And—the ability to hold grief and joy at the same time.

As you listen, carry this quote with you: “We don’t need translators for our pain—we need people who speak the same language.” Parents who have lost a child deserve support from others fluent in the deeply specialized language of loss. Jon and Jenn have built something profoundly necessary for families walking this path, and I am deeply inspired by what they continue to offer those coming up behind them.

To learn more about Zach's Bridge, please visit zachsbridge.org
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When we were in treatment, I was one of those parents who wanted to hear everything about every single paediatric cancer family I could. Not only because I was looking for support, but because these were my new people. This was my new community and I wanted to fully immerse myself into this world because I simply didn’t fit in my old one anymore. One of the ways I was able to dive in was listening to the podcast Help and Hope Happen Here hosted by the most lovely and biggest hearted human, Mark Levine. Mark has immersed himself in the paediatric cancer world for different reasons than most of us have - he is not a cancer parent, but instead a true, full fledged ally to oncology parents and children who is dedicated to raising awareness and sharing our stories. Mark is close to 500 episodes of Help and Hope Happen Here - FIVE HUNDRED! He speaks to families, survivors, organizations, and clinicians connected to paediatric cancer, and he does it with so much care and attention to his guests. I really wanted to speak to Mark to ask him about what HE thinks when he talks to cancer parents, what he takes away, and what he sees and hears after spending hundreds and hundreds of hours in deep and meaningful connection with us. So, let’s dive deep with Mark. Hosted on Acast. See acast.com/privacy for more information.