Embracing hope through every challenge: Brock’s journey

Cassandra never imagined how many turns her family’s journey would take, but loving her son, Brock, has taught her resilience, creativity and fierce advocacy. Brock is nearly 13 years old and lives with complex medical needs, including hydrocephalus with a ventriculoperitoneal (VP) shunt, cerebral palsy, chronic kidney disease, autism spectrum disorder, intellectual disability, developmental delay and a neurogenic bladder that requires catheterization. He lives at home with his mom, Cassandra, his sister, Olive, his grandma and his stepdad. They face each day together as his tight-knit care team.

Before 2019, Brock ate and drank by mouth. Then a life-changing fall down 13 steps caused a brain bleed, and Brock slowly lost the ability and desire to eat. His weight dropped to dangerous levels, and Cassandra knew something had to change. Choosing a feeding tube was not easy, but it became necessary when Brock stopped gaining weight altogether. The feeding tube became a lifeline.

The learning curve was steep. Cassandra became the only one trained to manage Brock’s pump and tube changes, while also teaching others how to care for him, since in-home nursing was not an option. The cost of equipment added constant stress, even with assistance programs, and emergencies often meant long trips to The Hospital for Sick Children (SickKids) because local hospitals were not trained to manage paediatric feeding tubes. There were unexpected challenges too, like Brock learning how to open his feeding line mid-feed, or discovering that their travel backpack blocked the tubing, leading the family to invest in intravenous (IV) poles and multiple pumps so Brock could move freely at home and out in the community.

Despite the hurdles, the feeding tube changed Brock’s life for the better. He is now gaining weight appropriately and has more energy to enjoy the things he loves, just like any child. These include camping with his family, attending Scouts, playing soccer, riding his bike in the summer, watching Peppa Pig and lining up his dinky cars. Grandview Kids has been a constant source of support for Brock and his sister as they have accessed services, including occupational therapy, physiotherapy, speech-language pathology, the Complex Care Program, therapeutic recreation and dietitian support to ensure Brock gets the nutrition and fluids his body needs.

Cassandra’s message during Feeding Tube Awareness Week is one of honesty and hope. She advises caregivers and parents exploring the use of a feeding tube to ask questions, explore all tube options, seek out community resources and not to let fear or doubt stop them from choosing something that can help their child thrive. “You don’t have to do it alone,” Cassandra emphasizes. “If challenges arise, reach out to hospital g-tube teams, members of your family and others in the Grandview Kids community who understand.” Brock’s feeding tube is not a limitation; it is a part of the reason he continues to grow, explore and be exactly who he is.