Why My Son with Childhood Cancer Became Rah Rah: Honouring a Child’s Survival Language

Conversations Beyond Words

There are conversations in childhood cancer that happen without a single word. They happen in the stiffening of a small body in a hospital lift, the tight grip of a hand during a blood draw, or the quiet refusal of a once-loved toy. For us, one of the most profound conversations began the day my son Finley started insisting we call him “Rah Rah.”

It didn’t happen overnight. It was a gradual shift, a quiet insistence that grew louder as the hospital corridors became more familiar. At first, it seemed like a toddler’s game, a cute nickname that would pass. But as the chemotherapy cycles marked our calendar, “Finley” became a name he would shake his head at, and “Rah Rah” became the only name he would answer to. It was a boundary he was drawing, a flag planted in the sterile landscape of paediatric oncology.

Childhood Cancer and the Language of Survival

As a father who once walked these same hospital corridors as a boy with cancer, my nervous system is tuned to the subtle language of survival. In a world where your body is no longer your own—measured, prodded, and poisoned in the name of healing—a child will find a way to claim something back. For my son, it was his name.

Psychologists might call this dissociation or compartmentalisation: an unconscious coping strategy to protect the self during trauma. Finley was the boy enduring chemotherapy, Hickman line care, and the endless cycle of nausea and exhaustion. Rah Rah became the child who still played with toy cars, laughed at cartoons, and lived outside the ward. By insisting on Rah Rah, he created a self untouched by IV pumps and antiseptic.

Fatherhood, Grief, and Resilience

As a dad, I recognise this survival instinct. To show up for Finley, I have had to build my own “box” to carry grief — the grief of our stillborn son, Bailey, and the fear for the child in front of me. My son is doing the same, creating space to protect his spirit while his body fights.

Honouring his choice of name is more than accepting a nickname. It is recognising a child’s agency and resilience during cancer treatment. In paediatric oncology, protecting a child’s wairua (spirit) is just as important as treating their tinana (body).

Lessons for Other Families

To the families walking a similar path: you may see your child retreat into a new name, a ritual, or a rejection of something once loved. These moments aren’t simply losses. They are survival strategies. They are ways our children tell us what they need to feel safe.

Our role as parents isn’t to pull them back to who they were. It’s to meet them where they are, to learn their new language, and to honour the identity that helps them endure.

In our home, we don’t have one son fighting cancer. We have two: Finley, the warrior enduring Wilms tumour treatment, and Rah Rah, the boy whose spirit insists there is still room for light.