Maya’s Journey: The Treatment That Hurt Her… May Also Be Saving Her?

There are some words you wait years to see in writing.

After everything Maya has endured in the last 5 months at GOSH (Great Ormond Street Hospital),, we finally read the sentence we had been desperately hoping for:

“Maya currently does not require treatment for Neuroblastoma.”

For a family who has spent nearly nine years fighting this disease, those words carry more weight than we can ever fully explain.

This is Maya’s story — where it began, where we are now, and what we are hoping for next.

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## Where It All Began

Maya was just 3 years old when she was first diagnosed with neuroblastoma in 2017 — an aggressive childhood cancer in her left adrenal gland.

From that moment on, life as we knew it changed forever.

What followed was years of treatment that no child should ever have to endure:

- High-dose chemotherapy

- Stem cell transplant

- Major surgery

- Radiotherapy

- Immunotherapy

- Endless blood tests, scans and transfusions

- Hospital admissions

- Clinical trials all over the UK

Maya fought through every stage with a strength that still leaves us in awe!

And for a while, we dared to believe we had beaten it.

After intensive NHS treatment between April 2017 and September 2018, Maya achieved NEAD (No Evidence of Active Disease). Then from February 2019 to February 2020, she travelled to Memorial Sloan Kettering in New York for further treatment through a clinical trial, supported by the incredible charity Solving Kids Cancer UK.

For a time, there was hope that the nightmare was behind us.

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## When the Cancer Came Back

In July 2023, just after Maya turned 10, the cancer relapsed.

And when neuroblastoma relapses, it can return with a vengeance.

As we were told, once relapsed, neuroblastoma becomes incredibly difficult to control. From that point on, treatment becomes a race — either to try to eliminate it again, or to buy precious time.

So the rollercoaster began all over again.

More harsh treatments. More hospital stays. More fear. More hope.

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## CAR-T: A Last Hope With a Devastating Cost

In September 2025, Maya was enrolled CAR-T cell therapy at Great Ormond Street Hospital (GOSH).

We held onto hope that this could be the breakthrough she deserved.

And now, after everything that followed, we are finally seeing signs that the CAR-T may well be doing exactly what it was designed to do.

Maya’s February MIBG scan showed only “minimal” uptake, and her most recent disease assessment confirmed a reduction in the size of the remaining site of disease.

Most importantly of all, we now have written confirmation that:

“Maya currently does not require treatment for Neuroblastoma.”

After years of battling this monster, those words mean the world.

It does not mean the journey is over. It does not mean we can fully relax. But it does mean that, for now, the Car T cell therapy appears to be doing its job against the neuroblastoma cells.

And that matters more than words can say.

But the heartbreaking truth is this:

The treatment that may be helping save Maya’s life has also left her with devastating complications!

Following CAR-T, Maya developed:

- CRS — overwhelming inflammation

- ICANS — brain inflammation and traumatic brain injury

- HLH — an immune system that would not switch off

These complications were catastrophic!

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## Where We Are Now

Maya has now been in hospital for almost five months.

She sadly lost all mobility and has been left disabled as a result of the treatment complications. She remains severely immunosuppressed, still needing frequent blood and platelet transfusions, and her recovery has been painfully slow and uncertain.

This is the hardest pill we have ever had to swallow.

To see your beloved child survive so much, only to face life-changing disability, is a grief that is impossible to put into words.

And yet, even here, there is still hope.

The literature says ICANS can be reversible, and that is what we are holding onto with all our hearts.

Because slowly — so slowly — we are beginning to see signs of Maya pushing her way back through. Recently, Maya has started speaking again. Hearing her voice is something we will never take for granted. She is still our brave, funny, cheeky, mischievous Maya.

Anyway, I’ve attached a few photos, one of which proves Maya’s mischievous streak is still very much alive. She decided to wear an Ariel-style bright red mermaid wig to her physio session, and then she started pressing the up and down buttons on the ceiling tracking hoist — much to the absolute horror of her Physio team! Classic Maya behaviour. It definitely gave us a good laugh and brightened our day — hopefully it gives you a little smile too!

And every tiny sign of progress feels monumental.

The human body is incredible.

The way it can endure so much… and still find a way to heal.

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## The Next Stage: Intensive 3-months Neurorehabilitation at Tadworth

Following assessment, it has been recommended that Maya would benefit from a period of residential neurorehabilitation at The Children’s Trust in Tadworth, Surrey, for up to 12 weeks, funded by specialised commissioning.

This is a major next step in Maya’s recovery.

We are hopeful that Tadworth will help her regain strength, function, and as much independence as possible.

It is a step forward.

And we are grateful for it.

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## Our Greatest Hope Right Now: “Home” Before Tadworth

Before Tadworth begins in May, our greatest wish is simple: That Maya may be able to come home in April first. Even if only for a few weeks. Just to be home. Just to be together. Just to breathe as a family again.

By the end of March, we will have been in hospital for five months.

For nearly five months, it has felt as though we have become single parents in two different places.

I have barely seen my husband, Terry.

I have barely seen our daughter, Lola.

Our whole family has been stretched across survival mode.

If Maya could come home before rehab begins, it would give us a precious chance to reset, regroup, and spend time together as a family before the next stage starts.

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## Preparing Our Home for Maya

If Maya is able to come home, our lounge will temporarily become her bedroom. Terry is already doing everything he can to prepare the house for her. He is laying laminate flooring in the lounge, because the old wooden floor was too cold and draughty for the room that may now need to become Maya’s temporary bedroom.

He is also planning future accessibility changes, including eventually converting our family bathroom into a wet room, so that Maya can one day have a proper shower using a “bath wheelchair” rather than relying on bed baths. These are not the kinds of home adaptations any parent imagines making for their 12-year-old daughter. But this is where we are. And we are adapting because we love her.

Because if Maya gets the chance to come home before Tadworth, we want home to be ready for her. Not perfect. Just safe. Warm. Comfortable. Full of love.

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## The Financial Reality

Alongside the medical and emotional devastation, the financial strain has become enormous. I am currently on off work for nearly five months (!) so I can stay by Maya’s side at GOSH. Whether I can return to work in April will make a huge difference to our ability to stay financially afloat. Our mortgage is due for renewal by July, and maintaining a stable income is crucial so that we are not viewed by the lender (bank or financial institution) as financially unstable. If I remain off work through April, it could place us in a very dangerous position financially.We have already:

- Exhausted the money we had access to

- Reached the limits of credit cards and loans

- Sought help from charities, family and friends

- Continued carrying the costs of travel, bills and daily living while split between hospital and home

We are doing everything we can to hold things together. But the truth is, we are frightened of what happens if we cannot stabilise things soon.

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## What We Are Holding Onto

So this is where we are now. Still heartbroken. Still exhausted. Still scared at times. But also — for the first time in a while — Holding onto something real. Because after everything, we now have it in writing that:

- Maya’s remaining disease site has reduced in size

- Her February 2026 MIBG showed only minimal uptake

- And right now, she does not currently require treatment for neuroblastoma. That is the hope we are clinging to.

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## What We’re Praying For Now

All we are hoping for now is this:

That Maya keeps progressing. That ICANS proves reversible. That she gets to come home in April before Tadworth starts in May through to July. And that we get to keep our house. That may sound like such a simple wish. But after everything we have lived through, it feels like the whole world.

Maya has spent nearly nine years battling neuroblastoma. She has endured more pain, more trauma, and more uncertainty than most people will face in a lifetime. And yet she is still here. Still fighting. Still smiling. Still showing us what courage really looks like.

If you have followed Maya’s journey, supported us, prayed for us, or simply taken the time to read her story — thank you.

From the bottom of our hearts, thank you.

Because right now, home is not just a place. It is H-O-P-E.

If you have read this far, thank you for taking the time to learn about our beautiful daughter Maya. It means more to us than you will ever know. Maya continues to fight every single day with courage that humbles us as her parents.

If you are able to donate, no matter how small, it will help ease the financial burden on our family so that we can focus on what matters most — being by Maya’s side and creating precious memories with her. And if donating isn’t possible right now, simply sharing Maya’s story could help it reach someone who can.

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

Or via bank transfer to Santander

Sort code 09-01-36

Account number 49579984

Reference: Maya’s Journey

Funds raised will help our family cover the essential costs of staying close to Maya during this incredibly difficult time. This includes travel between Kent and Great Ormond Street Hospital, and eventually The Children Trust (TCT) in Tadworth, Surrey, basic living expenses while we are unable to work, and helping us create meaningful moments and memories with Maya during her recovery.

Every donation — whether it is £5, £10 or more — truly makes a difference. When many people give a little, it becomes something incredibly powerful for a family facing the unimaginable.We truly believe that kindness and compassion from strangers can carry families through the darkest moments. From the bottom of our hearts, thank you for standing with Maya.

With love and gratitude,

Dellanie (Mum) ❤️

With love and gratitude,

Dellanie (Mum)

P.S. We always pay kindness forward.

“Every share gives Maya’s story another chance to reach someone who may be able to help.”