CAR-T Was Meant to Cure Her

When a Timetable Becomes a Test of Survival

On the wall, it looks like a timetable.

Boxes, times, coloured pen, scribbled notes.

But for Maya, and for us as a family, this is not a schedule — it is survival.

Every weekday is filled with physiotherapy, occupational therapy, speech and language therapy, hydrotherapy, gym sessions, passive bike ride, play team, orthotics, dietitian reviews, hospital school, and maths with Sue.

Each square represents a fight to regain what was taken.

Each session is part of an MDT neuro-rehabilitation programme that Maya never should have needed.

All of this stems from an innovative CAR-T cell therapy trial, a treatment designed to eradicate her neuroblastoma — a treatment that gave us hope when options were running out.

But instead of healing alone, it brought devastating consequences.

Maya developed cytokine release syndrome (CRS), ICANS, and HLH — severe, life-threatening immune reactions.

Her brain became inflamed.

She sustained a traumatic brain injury.

And our lives changed forever.

Now, Maya requires platelet transfusions every 3–4 days and blood transfusions every 14–21 days just to keep her safe.

She remains on a heavy and complex medication regimen — Anakinra, Ruxolitinib, Aciclovir, Meropenem, Itraconazole, Amiloride, Keppra, Prednisolone, Levothyroxine, alongside essential but awful-tasting electrolytes like potassium, phosphate, and magnesium.

She is learning to eat again — slowly being weaned off Compleat milk via her NG tube.

Some medications she bravely swallows as tablets (her preference), while others test every ounce of her determination.

Nothing about this is easy.

And yet — Maya keeps going.

Consistency is everything in Maya’s recovery.

The repetition of gym sessions and hydrotherapy.

The endless repositioning, stretching, strengthening.

The moments that don’t look like therapy but absolutely are.

Her Daddy travels four times a week, plus weekends, because sitting on his lap strengthens her core.

Opening Christmas presents becomes fine motor therapy.

Being held becomes rehabilitation.

Love becomes medicine.

But this journey comes at a cost beyond what any family should bear.

Four return train journeys a week from Ashford to London St Pancras amount to nearly £500 every four weeks — just for travel.

This is why we continue to rely on the generosity, compassion, and kindness of others.

Because no family should have to choose between presence and affordability.

What carries us through is gratitude.

Gratitude for the everyday moments — the fact that we still get to enjoy Maya, hear her laugh, see her try, watch her fight.

Gratitude for kind-hearted people who continue to support us financially, emotionally, and silently, without question.

Gratitude for the hands that lift us when we are too tired to stand.

Resilience is not something you choose — it is something you discover in the darkest moments of your life, when you realise there is no alternative but to keep going.

And it would be a disservice not to say this clearly:

Maya is the strongest among us.

What she faces daily would challenge every one of us combined.

Yet she shows up.

She endures.

She fights the hardest battle — quietly, bravely, relentlessly.

“Some warriors wear make-up instead of armour — and they are the bravest of all.”

Thank you for standing with us.

Thank you for believing in Maya.

Thank you for helping us survive the unimaginable — one day, one session, one act of kindness at a time.

To those that have asked:

PayPal to dellanie_nash@yahoo.co.uk (as a gift)

Bank transfer:

Santander

Mrs D C Nash

Sort code 09-01-36

Account 4957 9984

Reference: Maya’s Journey

Resilience is forged where hope and heartbreak meet. And gratitude turns what we have into enough. Thank you all for your generosity and compassion xxx