About - Maya N

Story written 2024

Maya unfortunately relapsed with Neuroblastoma after being stable for 4 years and 10 months. It has now spread to her skull, spine, pelvis, thigh bones and arms.

Update 31st August 2026

Maya worked hard in neuro-rehab but had to leave early due to severe pain. Scans have shown new Neuroblastoma areas. The Neuroblastoma is currently in her skull, chest, ribs, liver, spine, right upper arm and both thigh bones,

Update 2nd June 2026

Since Maya was discharged home on 30th March after five months at GOSH, life has become a constant battle to secure the equipment, services and adaptations she needs simply to live safely and with dignity.

Our days have been consumed by appointments, assessments, phone calls, emails and endless advocacy.

Since coming home:

Maya finally received her wheelchair after three weeks. We have had a couple of home adaptation assessments. Hoist installation failed due to contractor errors. We are still waiting for a suitable WAV (Wheelchair Accessible Vehicle). Maya still sleeps in our living room. She still has no adapted bedroom. She still has no suitable bathing facilities. These are not luxuries. They are basic needs for a disabled child.

Despite surviving severe complications following CAR-T therapy, despite months in hospital and despite everything cancer has already taken, Maya continues to face Neuroblastoma.

On 7th May, she underwent radiotherapy at The Royal Marsden.

Sometimes we wonder how much one child can possibly endure. On 1st June, Maya begins intensive neuro-rehabilitation at The Children’s Trust in Tadworth.

She desperately wanted to remain at home, so we will travel approximately 130 miles every day, five days a week, for 12 weeks.

Update 1st of May 2026

Maya has a new area of active Neuroblastoma. When it was first found it was 7mm and on the most recent scan it was 12mm. It’s between T9-T10 on her spine. Chemotherapy isn’t an option but they are discussing options.

Update 31st of March 2026

Today Maya went home after 5 long months in Great Ormond Street Hospital. The good news is her Neuroblastoma is currently stable and doesn’t require treatment but she has suffered a lot of damage from the CAR-T cell therapy. She is still herself though and is waiting for a bed at a brain injury rehab place. Until the bed becomes available Maya and her family will be enjoying some family time at home. Thank you to everyone who sends Maya and Lola post.

Update 15th November 2025

Our beautiful Maya has reached one of the most difficult parts of her CAR-T cell therapy journey. Over the last week or so, she developed severe ICANS (Immune effector Cell–Associated Neurotoxicity Syndrome), a complication where the brain becomes inflamed from the powerful immune treatment that is fighting her cancer #neuroblastoma.

Because of this inflammation, Maya has been experiencing:

•confusion

•struggling to speak

•tremors

•agitation

•seizure-like jerky movements

•and very long periods of reduced level of consciousness

Watching Maya like this has been the most painful thing we’ve ever gone through as parents. Our little girl, who was laughing, talking and singing only a little over a week ago, is now fighting silently through something no child should ever face.

When Maya was in ICU, she was surrounded by machines and wires, receiving:

•maximum-dose steroids (Dexamethasone initially, now changed to MethylPrednisolone)

•continuous Anakinra

•Tocilizumab (several doses given) and •Siltuximab (one-off)

•Rituximab (one-off to “switch-off” the Car T cells

•antiviral and antifungal protection

•IV fluids and potassium

•seizure prevention (Keppra or Levetiracetam)

•round-the-clock monitoring

Maya is on the highest level of care, with every treatment available to calm the inflammation in her brain and stabilise her body.

And although this stage is terrifying, we are holding onto the hope that Maya will recover from severe ICANS.

She will eventually wake up slowly.

She will start responding.

She will begin to speak again.

She will regain movement and strength.

We had been warned that recovery is NOT instant — it often takes several weeks, sometimes months — but her medical team is doing everything possible to bring her back to us, step by step.

We cling to HOPE every second.

Update 12th November 2025

On Sunday, 10th November the first signs of neurotoxicity appeared — hallucinations, confusion, and Maya “talking” to her best friends and pets.

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 — we agreed to the doctors’ decision 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.

Watching Maya like this is soul-destroying.  But I’m clinging to every flicker of hope, staying positive, and trusting her team.

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.

Update 3rd November 2025

Despite being on constant treatment Maya relapses again. She is currently in hospital having CAR-T cell therapy. She has been struggling a lot with pain.

Maya is now 12 years old and has a heart full of sparkle and joy. She loves karaoke nights and singing her favourite songs at the top of her voice — music is her happy place. When she’s not singing, she’s pampering herself with a manicure, pedicure, or a relaxing reflexology or full-body massage — because feeling good matters just as much as having fun!

Fashion and beauty light her up — she adores make-up, spritzing her favourite perfumes, and browsing through the aisles of TK Maxx and Primark for cute clothes and treasures. For a perfect day out, Maya loves a round of crazy golf, a game of bowling, or a pamper day at the spa followed by a cosy stay in a hotel — with the best bit being breakfast the next morning!

She’s also a Lego lover and could spend hours building and imagining adventures — especially when visiting Legoland or Chessington, two of her favourite places. Maya loves animals too and enjoys trips to the zoo, where she lights up seeing the lions, monkeys, and penguins.

Her eyes truly sparkle during the festive season — she adores Christmas lights, Lapland visits, and all the magic that comes with them. And when it’s time to eat out, Maya’s favourites are Wagamama, Pizza Express, Nando’s, and any cosy noodle spot that makes her smile.

Maya is a girl who finds joy in life’s little luxuries, laughter in every moment, and magic everywhere she goes.

Being a sibling is tough on Lola too, music keeps her going. Lola’s world seems to hum with music. When she’s not strumming her guitar or figuring out a new tune on the piano, she’s singing her heart out at Open Mics or turning karaoke nights into mini concerts. Her love for music runs deep — it’s what makes her eyes light up when she talks about her Diploma for Music at college. But Lola isn’t all rehearsals and practice rooms; she’s got a flair for style too. She loves clothes shopping, wearing her favourite designer perfume, and treating herself to spa days and nail salon trips with friends. Whether she’s laughing with her indie bandmates or chilling with her fashion-loving crew, Lola’s figured out how to mix passion, fun, and self-care in perfect harmony.