Cynthia Apiyo – Rise up

Cynthia Apiyo recalls how she lost her son, Jaydon, three years ago and calls on the public to unite for the interest of paediatric oncology.

Cynthia Apiyo (37) lives in Pretoria, Gauteng with her husband, Loyd, and their six-year-old daughter, Jemimah.

I remember the ophthalmologist (specialist eye doctor) saying he suspected cancer. In that moment, the trapdoor opened, and I fell. 

How could Jaydon, my sweet two-year-old boy have cancer?

Loyd, Jaydon, Jemimah, and I headed to what should have been a routine appointment. The four of us squeezed into our car with plans for the playground afterward. Just another weekday. Just a checkup for that unusual glint in Jaydon’s eye.

But what I heard there turned our world upside down. “I’m concerned about what I’m seeing in Jaydon’s eye. The reflection pattern suggests retinoblastoma (a rare childhood cancer of the retina).”

A parallel universe

In the weeks that followed, I discovered a parallel universe I never knew existed, one where children fight battles they never signed up for. Where five-year-olds recite medication schedules instead of nursery rhymes. Where tiny bodies house enormous courage.

I watched Jaydon learn to swallow pills before he could tie his shoes. I saw him develop friendships with nurses instead of neighbourhood playmates. Through it all, Jaydon found his constant source of strength in Andra Day’s song Rise Up. When the chemo became too much, when his tiny body trembled, I would play that song. His eyes would close, his breathing would steady, and sometimes he’d whisper along to the words about rising a thousand times again. That song became our anthem, our prayer, our moment of peace in the storm of treatments.

The hardest wordS to ever speak

Despite everyone’s best efforts, the dedicated medical team, our family’s unwavering support, Jaydon’s incredible resilience, the cancer was relentless. Six months after diagnosis, we received the devastating news: meningeal metastasis. The cancer had spread to the membranes surrounding his brain and spinal cord.

That night, Loyd and I sat by Jaydon’s hospital bed, holding hands and praying. When Jaydon’s pain became unbearable, I found the hardest words I have ever spoken as a mother. “It’s okay to let go, sweetheart,” I whispered, stroking his hair. “Mommy’s here. You’ve been so brave, but you can rest now.”

Loyd said goodnight, kissed his forehead, and left to check on Jemimah. “I’ll be back in the morning,” he promised, not knowing there wouldn’t be a morning for Jaydon. After watching his father go, Jaydon needed to be sedated for the pain.

After Loyd left, something profound happened. A mother who had lost her own child to cancer appeared in the doorway. Without words, she simply came and sat beside me, and we cried together, two mothers bound by an unthinkable loss, sharing the weight of pain that only we could understand. In that sacred moment of shared sorrow, I wasn’t alone. 

Just hours later, I held my precious boy’s hand as his breathing slowed, continuing to whisper how much he was loved. In that quiet room, with just me by his side, Jaydon slipped away, too quickly, too young, too precious to be gone.

A call to stand together

Jaydon never got to start preschool. Never learned to ride a bike. 

Cancer stole these milestones and countless others in just six short months.

These children measure time not by holidays or school terms, but by treatment cycles and scan dates. They endure pain with a resilience that humbles even the strongest adults. Yet they remain children, laughing, playing, dreaming whenever their bodies allow.

There is a world out there where children are fighting cancer monsters, invisible enemies that steal childhoods and replace playgrounds with treatment rooms. These children deserve so much more than brave smiles and fighter labels. They deserve research, funding, treatments designed specifically for their developing bodies. Paediatric cancer research remains severely underfunded. Our kids deserve better. 

But our story isn’t just our own. It belongs to every family facing paediatric cancer, a community no one wants to join but that offers profound support once you’re there. Together, our voices can demand change. We can insist on more research funding, better treatment options, and greater awareness. Because every child deserves a childhood uninterrupted by cancer, and every moment of love matters infinitely.

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