The Weight No Parent Should Carry

This is an open letter to cancer — the disease that has tried, time and time again, to steal my daughter from us.

Tonight, I am struggling.

I find myself replaying the videos from just before Maya received her CAR-T cell infusion on 4th November 2025— watching the moment when hope and terror stood side by side. I watch my daughter Maya deteriorate before our eyes, in front of Terry and me, and I see our daughter slowly fading away from us. And the guilt… the guilt is unbearable. The kind of guilt that claws at your chest and steals your breath. Because this wasn’t illness that simply arrived — this was something we consented to, something we signed our names under, believing it might save her life.

No parent should ever have to live with that weight.

We did not know it would lead to CRS.

We did not know it would cause ICANS.

We did not know HLH would nearly take her from us.

But knowing that doesn’t make the pain any easier to carry.

What makes it harder is the uncertainty. We don’t yet know if the CAR-T cells have done what they were meant to do — whether they have learned to recognise and destroy the neuroblastoma cells before they have the chance to grow again. We are suspended in a space where answers don’t exist yet, and fear fills the silence.

Maya has been complaining of back pain, and that fear tightens its grip. I can endure many things, but pain — my children’s pain — is something I cannot bear. And watching Maya hurt, after everything she has already survived since she was just three years old, feels almost impossible.

People see the smiles.

They see the bravery.

They see the strength.

What they don’t see is how heavy it is to keep holding yourself together when your heart feels like it’s breaking. How long can you wear bravery like armour before it starts to crack?

And yet — look at her! Look at my dear daughter Maya.

Despite the moon-face from prolonged high-dose steroids, despite everything her body has been forced to endure, Maya’s wicked sense of humour is still alive and kicking! She still laughs uncontrollably at jokes about farts, burps and poos. Her giggles echo through hospital walls and keep us sane on days that would otherwise swallow us whole. Her joy, somehow, still finds a way to exist.

So I ask you — neuroblastoma— the disease that has haunted our lives for far too long — hasn’t she fought enough? Haven’t you taken enough from her? So many people have witnessed how fiercely my daughter has battled you. How bravely she has endured what no child ever should.

And this is where my voice becomes steady.

You will not crush Maya’s spirit.

You will not break her light.

Maya is still here. She is still laughing. She is still fighting — and so are we. And until the very end of this story, we will stand between you and our daughter, refusing to surrender her future.

Because Maya is my daughter — and strength runs in her blood.