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Maya has come so far, and we’re so grateful for every tiny step forward. Being moved out of ICU was a huge relief, but I want to be completely honest with you all — she isn’t out of the woods yet. Even though she’s now on the ward, her little body is still recovering from such an intense immune storm after treatment. ICU threw absolutely everything they had at calming it down — high-dose steroids, Anakinra, Tocilizumab, Siltuximab, Rituximab, and full anti-infective protectio

Just as we thought we were finally stepping out of the woods, everything changed again overnight. Maya’s condition has taken another worrying turn. Her breathing has slowed right down, her oxygen levels keep dipping below where they should be, her blood pressure has fallen, and her body has slipped into a coldness the nurses are trying to gently warm with a Bair Hugger blanket. Because her oxygen sats and temperature are unstable again, she’s back on oxygen mask, they’ve had

Relief. That’s the only word we felt when Maya was officially handed over from ICU to the Lion Ward today. We’d been bracing ourselves for this moment all morning. The big worry, of course, was that once she left ICU, the level of care would drop from that intense, minute-by-minute monitoring we’d gotten used to. But to our surprise—and honestly, our huge relief—Maya was allocated her own dedicated nurse for the whole day. One-to-one. No looking after three other children, no

Today, something beautiful happened. Something small on the outside, but huge for Maya… and for us. Just hours after Maya was moved out of ICU and into the Lion Ward—still on one-to-one nursing, still fighting her way back—Charlie walked in. Her Charlie. The boy who’s been by her side through so many chapters of this journey. Maya wouldn’t have been expecting it. And maybe that’s why it hit us so hard. The moment Charlie stepped into the room, something in the air shifted. Ev

Immune effector Cell–Associated Neurotoxicity Syndrome (ICANS) 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, 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

— A Heartfelt Reflection on Gratitude, Kindness & Resilience When Maya’s body was being ravaged by what the doctors call “cytokine showers,” I heard her whisper, “Mum, please help me,” while her heart and lungs drowned in fluids. I watched her chest struggle for each breath, and I pulled the crash button as the monitor shrieked and her heart rate shot to 172 bpm. The pure terror in her eyes… that look is carved into my memory. I don’t think any parent can ever forget the mome

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, a

In the early hours of 11th November, Maya was transferred to the ICU team — they can monitor her more closely and act quickly if she deteriorates. Right now, she’s mostly “absent”… drifting in and out, talking softly to her best friends Charlie and Loxley, and to her pets Honey, Timmy, and Mochi. Thank you for all your messages. Apologies if not able to reply immediately. Thank you for donating towards train fares and hospital foods. If love and prayers could heal….

https://share.icloud.com/photos/056JOasGIGlmttZmzEJqFMl8Q 🩷 Maya Update – Monday, 10th November 💜 After one Sunday night of sleeping at home following my MRI yesterday (Sunday 9th Nov), I’m now back at Great Ormond Street Hospital (GOSH). Maya is very poorly, so I’m staying overnight with her again. My husband Terry isn’t coping well. He’s emotionally exhausted after a long, difficult Sunday night on his own with Maya. He’s currently staying overnight nearby at the Family A

Today (Sunday 9th November), Maya needed a platelet transfusion as her levels dropped to 24 (normal range: 150–450×10⁹/L). On Thursday 7th November (last week) Maya has had red blood transfusion! So grateful to the amazing blood and platelet donors who give the ultimate gift — the gift of life. 🩸 Your kindness keeps our brave girl going… you really are real-life superheroes. ❤️ PayPal details: dellanie_nash@yahoo.co.uk Santander Bank Mrs D C Nash Sort code 09-01-36 Account n

Suspected: Rotator cuff syndrome right shoulder Twenty to twenty-five minutes inside that MRI machine felt like an eternity! The noise, the stillness, the claustrophobic tunnel — I completely understand now why people ask for calming tablets beforehand. And to think… I don’t even suffer from claustrophobia! The friendly MRI team asked, “Have you had one before?” “Yes,” I said — but what I really meant was, I’ve been to many, just never inside one. I’ve spent years sitting bes

The last four days have felt like a never-ending tug of war inside Maya’s little body. We’ve been caught in what I can only describe as a vicious cycle — one step forward, two steps back. As a side effect of Car T Cell Therapy, Maya’s blood pressure has been stubbornly low, and her potassium and magnesium levels have been dipping too. The doctors have been doing everything they can to stabilise her — carefully giving her IV fluids to plump up her blood vessels and help raise

It’s hard to describe what the last few days have been like. I’m here on my own in Lion Ward, cubicle 5, watching my brave girl Maya fight through something that feels like a war raging inside her tiny body. On Tuesday 4th November, Maya received her CAR-T cell therapy — those precious cells we’ve been hoping and waiting for. It only took six minutes for the infusion to go in, but what’s happened since has been nothing short of a battle. Since Tuesday night, Maya has been fig

For the past one week (28th October to 3rd November), Maya’s been hooked up to an IV machine — receiving Fludarabine and Cyclophosphamide chemotherapy alongside 24-hours IV fluids and IV antisickness. Every drop going in and out of her little body is monitored, so every time she needs a pee or poo, she has to catch it in a pot. [Fluid balance: input vs output]. Saturday 1st November, nurse was way too busy in the morning which meant she was two hours behind in giving Maya her

🌼 Awareness & Gratitude 🌼 When I swapped with Terry on Friday night (31st October), I noticed Maya’s PICC line site looking red, sore and Maya was shivering (rigors). It had only been inserted a few days earlier (28th October) under general anaesthetic, so some discomfort was expected — but as a parent, you just know when something doesn’t look right. I raised my concern with the nurse looking after Maya, and I’m so grateful they took it seriously straight away. They checke

🌈 Appreciation Post 🌈 To all the amazing people who help make long hospital days a little brighter — thank you from the bottom of our hearts. ❤️ Although Maya continues her Zoom sessions with her wonderful teacher, Sue, she’s also been surrounded by so many caring souls who lift her spirits and keep her smiling through the hardest days — the incredible team at Spread A Smile Charity, the therapy dogs who bring comfort and calm, the ever-patient play therapist, and the kind

Three weeks to be confined in hospital — and still, this little warrior keeps shining through it all. 🩺 Friday 31st October: IV fluids all day. Cyclophosphamide (1 hour) + Fludarabine (30 mins). She missed celebrating her sister Lola’s Halloweeny birthday again, just like last year — but still found a way to smile. 🩺 Saturday 1st November: IV fluids all day. Cyclophosphamide (1 hour) + Fludarabine (30 mins). 🩺 Sunday 2nd November: Bloods, fluids finishing after 24 hours, a

They say time heals, but how do you heal from watching your child go through this again and again and again??? Another bone marrow biopsy. Another picc line insertion. Another anaesthetic. 28.10.2025 Another day wishing I could take her place. 💔 #HeartbrokenFather #ChildhoodCancerAwareness #Neuroblastoma #GOSH #WhyHer #DadLove #UnfairLife #CourageThroughPain #ForMaya P.s. There are supporters who don’t use Paypal. So for anyone who would like to donate directly: Santander b

Kind-hearted people have taken the time to suggest that Maya may be eligible for hospital transport — and we truly appreciate it. Patient Transport is a service provided by G4S on behalf of the NHS Integrated Care Board for Kent and Medway. It is designed to support you if your medical or physical condition means you cannot use public transport, get a lift, or drive yourself to, and from, your NHS appointment. people who are unlikely to qualify for this service are usually th

Caring for your child becomes everything. You are her teacher, her friend, her playmate, her taxi driver — you are her whole world. You advocate for her every day — explaining to doctors what hurts, when it started, and how often it happens. You learn about medicines you’d never heard of until they’re being pumped into your baby. You catch puke. You communicate endlessly. You might still be parenting another child, trying to juggle work, life and friendships, or pleading with