Pediatric Oncology Group of Ontario (POGO) hosted its annual Multidisciplinary Symposium on Childhood Cancer on November 4-5, 2022. The POGO Symposium, organized annually around a central theme, is POGO’s signature educational event for pediatric oncology health professionals. Central Nervous System (Brain) Tumours was chosen as the theme for 2022.
Patients with brain tumours often face challenges that are distinct from other types of cancer. To contextualize the scientific presentations delivered at the POGO Symposium, the planning committee wanted to share patient and family stories to shed light on how a brain tumour diagnosis affects the patient in their day-to-day life and everyone who cares for them.
To achieve this, POGO recruited five individuals whose lives have been impacted by a brain tumour diagnosis to work with Mike Lang, an expert in digital storytelling facilitation. Digital storytelling guides participants to use personal images and videos, voiceover narration, music, and various video-editing techniques to bring the meaningful moments of their life to the screen.
To quote Brené Brown, “Maybe stories are just data with a soul.” It is POGO’s hope that everyone who engages with these stories will learn something new about the childhood cancer experience, by seeing it through the eyes of patients and their families.
Ethan was six years old when he was diagnosed with medulloblastoma, sub category 3.
Today, Ethan is 10 years old and in this story he draws on his love of video games to talk about overcoming obstacles, forging new paths, and appreciating what makes him and others unique.
This story is a poignant reminder of the impact that a childhood cancer diagnosis has on the entire family unit, in particular, siblings. Layya talks about the confusion and pain she felt watching from the sidelines as her sister, Sara, went through treatment for a brain tumour.
Sara is Layya’s sister. She was diagnosed with low-grade astrocytoma when she was seven years old. What followed was a harrowing journey that moved her family from their home in Lebanon to Canada to seek treatment, which was difficult for the entire family. The hardest part of the journey for Sara, though, came after she was declared “cancer-free,” which is an experience shared by many survivors. Reintegrating into school and relating to her peers were tremendous challenges at first. Yet Sara perseveres, and her story is a powerful reminder that even small acts of kindness can make all the difference in the lives of a child with cancer.
Yvonne is mother to Alyssa. This story describes Yvonne’s early experiences with the healthcare system as she searched for an answer to what was ailing her child. A mother’s intuition is a powerful thing, and Yvonne knew something was terribly wrong. Instead of support, she encountered suspicion, judgment and worse.
This story delivers a message that is hard to hear, but one that we can all learn from. It is not about any one institution, but rather highlights inequities in the healthcare system at large that will only be corrected when we collectively acknowledge and address them. POGO shares this story in the spirit of learning together to help us all be positive agents of change.
Nelly was diagnosed with medulloblastoma when she was 10 years old, which significantly affected her vision. She was in the dark—literally and figuratively—and felt so hopeless at times that she didn’t see the point of engaging with the world around her. Nelly’s story reminds us how disorienting a cancer diagnosis can be for a child, and how resilient children can be in the face of challenging circumstances.