💔 Maya’s Battle — ICU Update (12th November)

On Sunday, 10th November, Terry swapped with me so that I could attend my own MRI for a right shoulder rotator cuff injury and get a few nights of proper rest at home. I desperately needed the break after a week of sleepless nights beside Maya’s bed.

But as fate would have it, whilst Terry was looking after her, the first signs of neurotoxicity appeared — hallucinations, confusion, and Maya “talking” to her best friends Charlie and Loxley, and her beloved pets Honey, Timmy, and Mochi.

My planned respite was cut short. By Monday evening, I was back at Great Ormond Street Hospital [GOSH] — and both Terry and I were breaking inside as we watched Maya “drifting away,” her eyes rolling upwards, her body jerking as though seizing.

Terry stayed at a nearby family accommodation (a 5-minute walk from the hospital), while I stayed with Maya overnight. We agreed to take turns — one watching over her, the other trying to get a few hours of sleep. But that night, Maya’s eyes kept rolling upwards, and even when the hospital fire alarm went off, she didn’t react at all. Normally, she’d be curious and asking questions. This time, nothing.

At around 2am, as her steroid (Dexamethasone) infusion was finishing, her heart rate suddenly spiked to 172 beats per minute — and everything spiralled. I had to pull the emergency crash call button 🚨 on Lion Ward — one of the most terrifying things a parent can do.

By 3am on Monday 11th November, Maya’s care had been taken over by the ICU team due to severe, uncontained side effects of her CAR-T Cell Therapy — known medically as Cytokine Release Syndrome (CRS), sometimes called “cytokine storms.”

Since then, Maya has been mostly unresponsive, with jerky movements, and she’s now in acute heart failure due to fluid buildup around her chest. The doctors are hopeful this could be reversible. Her echocardiogram on Tuesday showed her heart’s ejection fraction at only 20%, improving slightly to 30% today — a small but meaningful sign of hope.

Maya is currently being monitored around the clock by Oncology, Cardiology, Neurology, and ICU teams. She’s receiving continuous Optiflow (45L/min, 25% oxygen), high-dose Dexamethasone (steroids), Tocilizumab, Anakinra, Siltuximab (a one-off dose), Milrinone (for heart failure), IV fluids with potassium (adjusted every six hours), Aciclovir, Allopurinol, and Levothyroxine, alongside supportive medications like Paracetamol, Chlorphenamine, Clonidine, Melatonin, and Ketamine when needed.

Despite all these intensive measures, today (Tuesday, 12th November) there hasn’t been further improvement. After long discussions with her doctors, Terry and I have made the difficult decision — one no parent ever imagines making — to switch off the active CAR-T cells using Rituximab, an antibody “safety switch” designed to destroy them.

The hope is that a small number of CAR-T cells will survive — enough to keep fighting the neuroblastoma cells, but without causing further damage to Maya’s heart and brain.

I’m deeply grateful to Enzo, Katelyn, and Lola for visiting Maya. It’s incredibly hard seeing her like this, but their presence means the world. Whilst Lola stayed at Maya’s bedside, Enzo and Katelyn helped me move our suitcases (from Lion Ward) to the family accommodation — a 10-minute walk from the hospital. Without them, I’d have had to do three trips on my own.

Watching Maya like this is soul-destroying.

But I’m clinging to every flicker of hope, staying positive, and trusting her team. I’m so sorry I haven’t been able to reply to everyone’s messages and calls — my days revolve around monitoring Maya hour by hour, working with her doctors as they reassess and adjust her treatment every few hours.

None of this was predictable.

CAR-T Cell Therapy was our only remaining option against neuroblastoma — a leap of faith we had to take. For now, we’re not worrying about the cancer; we’ll know more in early December when she has her bone marrow biopsy, MIBG, and MRI scans.

Right now, the focus is on saving her brain, her heart, and her spirit — bringing back our feisty, stubborn, happy Maya who sings her karaoke songs with all her heart.

To everyone who has messaged, prayed, donated, or sent love — thank you, from the bottom of our hearts. ♥️

Your kindness keeps us going through the darkest hours.

To those who wish to send help,

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

Or Santander bank

Mrs D C Nash

sort code 09-01-36

Account number 49579984

Reference : Maya’s Journey

One again, thank you so much indeed.

P.s. No photos to preserve Maya’s dignity xx