When Love Is All We Have Left

Thursday 20th November 2025

Can you imagine how daunting it felt to sit in a meeting room inside PICU, alone, with four clinicians — Maya’s consultant, the research doctor, the ICU doctor and her PICU nurse. Four walls that have heard far too many heartbreaking conversations about children.

After a few minutes of niceties, the consultant’s face turned serious. My heart was racing. She summarised everything from the CAR-T cell infusion on Tuesday 4th November, right up to Maya’s condition today. I could have fallen apart, but somehow, I held myself together.

Maya’s Journey

• 27 Oct – Stayed in GOSH Patient Hotel overnight

• 28 Oct – Admission, bone marrow biopsy and PICC line insertion under general anaesthetic

• 29 Oct – 2 Nov – IV chemotherapy for lymphocyte depletion (Cyclophosphamide and Fludarabine)

• 3 Nov – Rest day

• 4 Nov – CAR-T cells infusion

• 18 Nov – Planned Discharged (Day 14 post CAR-T) - of course, this didn’t happen!

Magneto Clinical Trial

• Two children on low dose

• Two on medium dose

• Two on high dose — Maya is #6, the final child on high dose.

The other high-dose child (#5) spent just one night in ICU and was discharged as planned. But Maya’s reaction went far beyond anything anyone anticipated. She developed Grade 4 ICANS from severe CRS — one of the most extreme levels of neurotoxicity. She isn’t in a coma, but at times, she feels heartbreakingly close to it.

The Guilt

And then there’s the guilt — the kind that chokes me and Terry.

We signed the consent forms. We agreed to CAR-T cell therapy.

If we didn’t… maybe Maya would still be her bubbly, stubborn, karaoke-singing self.

But what choice did we have?

Chemotherapy can knock neuroblastoma down, but it never stays down. It always comes back — harder.

And Maya is now in her third relapse, her fourth battle.

Seeing Maya Today

Our little girl can’t speak.

She can’t move — not even her neck.

Only her arms a little, and her right elbow is stiff.

She can only focus on us for a few seconds before her gaze drifts into nothingness.

Her brain is so inflamed that everything is affected — breathing, temperature control, digestion, movement, swallowing, even blinking.

Watching her slowly slip away is a pain beyond explanation.

Every night, I hide the ugly cry.

Every day, I put on a brave face.

A Visit That Meant the World

On Thursday evening, after finishing work, our karaoke friend Elle came to visit us.

Her presence meant the absolute world.

I’m sure Maya heard parts of our conversations — little fragments of normal life, laughter, love, and music.

I don’t know how Elle held herself together.

I could see the shock in her eyes.

Anyone who has sung and danced with our vibrant, stubborn, hilarious Maya would be devastated to see her like this — lying still, unresponsive, like a shell of the child she was just weeks ago.

Yet Elle stayed, gently, bravely, lovingly — and that kindness carried us.

The Care Plan

The team continues monitoring Maya hour by hour.

They’re using every medication and strategy to calm the inflammation and clear the CAR-T cells from her system. But it isn’t a switch you can flip.

Severe ICANS like this is known in adults — but not children.

And what Maya is going through is beyond frightening.

Our daughter is fighting for her life in ways no child ever should.

We try to be positive, but sometimes the darkest thoughts creep in:

How much more can we endure?

How long can we keep carrying this?

Haven’t we faced enough?

What if Maya survives but is left unable to speak, move, or live without pain — whilst still fighting cancer?

What if Maya doesn’t make it?

The mental torture is indescribable.

What Keeps Us Going

Love.

Pure, unexpected and unconditional love — from family, friends, neighbours, strangers, communities.

We may never repay it, but we will always pay kindness forward.

And we’ve learned to ignore the unkindness:

“Why fundraise if treatment is free?”

“They must be fundraising to pay off their mortgage.”

“They’re fundraising for treats.”

“If they work, they don’t need fundraising.”

“Surely there are charities to help them.”

If only these unkind people lived 24 hours in our shoes.

If only they understood Maya has fought cancer since before she turned four. She’s now 12.

Words like these can push someone over the edge.

They can destroy a fragile mind.

They can cause real harm.

But their words no longer matter to us.

We do not want a penny from unkind hearts.

Instead, I still hope their hearts soften one day.

That compassion finds them.

That humanity wakes within them.

Because in every moment of suffering,

there is always an opportunity to be kind.

#Neuroblastoma #ChildhoodCancer #ChildhoodCancerAwareness

#CancerWarrior #NeuroblastomaWarrior #CARTRTCells #ICANS #CRS

If Maya’s story moves you, please don’t keep it to yourself — share it, follow it, and help us reach the people whose support could save her life.