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🩷 An Update on Maya 💜 Over the past few weeks, I’ve shared snippets here and there. But I wanted to sit down and give you a proper update on Maya — because when you’re living it day by day, it’s hard to see the full picture. The Timeline 26th January – EMG (Electromyography) Needles into muscles. Wires measuring what Maya’s body can no longer do. 27th January – MRI head and whole spine under GA Watching Maya on her bed wheeled away, again, for another general anaesthetic —

Maya’s story Maya is a bright, spirited child whose care journey has taken her and her family through both joyful moments and profound challenges. This example shows how Queen’s Nurse Sharon Lee, with 47 years of dedicated service, and the wider team worked together to give Maya one special day at home with her family. It happened because everyone pulled together around Maya’s needs, demonstrating the collaboration, compassion, and patient-centred focus that define Queen’s Nu

So grateful for Vicky’s visit to Maya today (Tuesday 24th Feb). As Head of Family Support Services at Solving Kids Cancer UK — a specialist neuroblastoma charity — Vicky brings more than support. She brings understanding, reassurance and the feeling that we are never facing this journey alone. Thank you for standing beside our family throughout the years and fighting for children like Maya every single day. 🎗️ https://www.solvingkidscancer.org.uk

🩷 Gratitude Post 💜 From the very bottom of our hearts, the Nash family would like to say the biggest thank you to Queen’s Nurse Sharon Lee and John and Steve of BM Ambulance Service for making Home Leave for Maya possible today. In less than 24 hours, everything was arranged with such professionalism, kindness and efficiency. Because BM Ambulance is CQC-registered, the (Great Ormond Street Hospital) GOSH Research Team were able to approve the transport — which meant Maya co

Since November 2025, when Maya’s “brain went to sleep,” we have been tickling her feet. Every single day. It became a ritual looking for hope. A whispered prayer disguised as a tickle. And for months, nothing. No movement in her legs. No response. Just waiting. Watching. Hoping. On 15th February, I gently tickled her foot again. And something happened…Her toes moved! https://share.icloud.com/photos/081wHewA2xxW0c5t5ozzxMMDg Tiny. Subtle. But undeniable. After months of nothin

When Friendship Feels Like A Transaction The calendar does not lie. 26th January – EMG. Needles pushed into my child’s muscles. Machines measuring what her body can no longer do. 27th January – MRI head and whole spine under general anaesthetic (GA). Watching Maya wheeled away again. It never, ever gets easier!!! 😭 6th February – Bone marrow aspirates and trephine. Under GA. More samples. More waiting. More unknowns. 10th February – MIBG contrast dye injection. For 48 hours,

10th February 2026 — Plans, Platforms, and the Art of “Letting Go” Today was meant to be a very organised day. I had it all lined up: Terry and my wonderful mother-in-law Dora stepping in to look after Maya, while I hopped on the 16:37 train from London St Pancras to Ashford International for the Paediatric Asthma Guidelines Update Conference at The Village Hotel Maidstone. Sensible shoes. CPD brain switched on. A rare slice of normality. And then… the universe laughed. Loudl

“A Visit We’ll Never Forget” 9/2/2026 Today, Sharon Lee came to see Maya in cubicle 9 on Lion Ward — and what a special visit it was. Sharon is a Queen’s Nurse, a title awarded to nurses who show outstanding commitment to patient care and community nursing, and she has been a nurse for an incredible 47 years. I was lucky enough to work alongside Sharon during the pandemic, and now, years later, to have her standing by Maya’s side feels incredibly full-circle and deeply humbli

Facing Another Hurdle: MiBG Scan Ahead (under GA- General Anaesthetic) This Wednesday, 11th February, Maya will have her MIBG scan under general anaesthetic. The day before, Tuesday 10th February, she’ll have the contrast injection. Most of Maya’s medications are now given orally—Prednisolone tablet 4mg BD, Aciclovir, Amiloride 5mg, Melatonin (liquid)—and the nastier-tasting ones, Itraconazole and Potassium, go through her NG tube. Aside from her monthly IV Pentamidine, she

I read in the recent news about the government’s new plans to cover travel costs for families with children undergoing cancer treatment. https://www.gov.uk/government/news/government-to-cover-travel-costs-of-children-with-cancer On the surface, it does feel like a step in the right direction. Any acknowledgement that families like ours exist is something! But as with so many announcements, the detail matters — and at the moment, much of that detail is still missing. The schem

Friday 6th February 2026 was meant to be a simple, happy day — one filled with friendship — and in many ways, it was… just wrapped around hospital corridors, protocols, and long waits. Maya had been nil by mouth since 10pm the night before for her bone marrow biopsy and aspirate (BMAT) and lumbar puncture (LP). She was second on the morning list, but by 9am everything went pear-shaped. The consultant anaesthetist refused to take her down until a urine pregnancy test had been

#WorldCancerDay Today, Consultant Neurologist came to assess Maya. He was pleased with her recovery — slow, but real. Her upper limb movements are improving, and her cognition is completely intact. She’s still her. The EMG showed her spine is fine, but there are inflammatory changes that may have affected her lower limbs. Sensation and proprioception are there. She can feel. She knows where her legs are. Motor movement? Zero. We asked the question every parent dreads asking.

World Cancer Day: When “Rare” Becomes Your Whole World World Cancer Day is meant to raise awareness. To shine a light. To educate. But when your child has cancer, days like this don’t feel symbolic — they feel deeply personal. Neuroblastoma is often described as rare. Rare on paper. Rare in statistics. Rare in conversations that happen far away from hospital walls. But “rare” is only rare until it happens to you. And when it happens to you, it is no longer a percentage or a h

Revenge Bedtime Procrastination Every day feels the same. I wake up. I give care. I advocate. I lift. Then I repeat. It’s a Groundhog Day kind of life — except there’s no reset button and no lesson waiting neatly at the end. Just the relentless endurance of showing up, again and again, for Maya. Maya’s full-time needs shape every single hour of my day — medications, therapies, feeds, hoist transfers, comfort. She can’t do anything for herself yet, so I become her arms, her le

This is an open letter to cancer — the disease that has tried, time and time again, to steal my daughter from us. Tonight, I am struggling. I find myself replaying the videos from just before Maya received her CAR-T cell infusion on 4th November 2025— watching the moment when hope and terror stood side by side. I watch my daughter Maya deteriorate before our eyes, in front of Terry and me, and I see our daughter slowly fading away from us. And the guilt… the guilt is unbearab

The Questions We’re Still Living With Yesterday, 26th January 2026, Maya underwent an EMG (electromyography) — a test to assess how well her nerves and muscles are communicating. The questions we are desperately hoping to get answers to are ones no parent should ever have to ask: Why are Maya’s lower limbs still not responding? Have her nerves been permanently damaged by the severe immune reactions following CAR-T cell therapy? These questions sit heavy with us — because they

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 ta

2 January 2026 Apologies for the long gaps between updates. Since Maya has become more aware of her surroundings and is now able to communicate—albeit in a limited way (she sounds like she’s just come out of the dentist with her mouth still numb from anaesthetic)—my entire self has been devoted to her care, rehabilitation, and recovery. From the moment she wakes in the morning until she falls asleep at night, all my energy is focused on Maya. By the time she finally sleeps, I

Gratitude: New Year’s Eve Reflections Lately, I’ve been thinking a lot about why gratitude has become something I hold onto so tightly. When Maya was diagnosed back in April 2017, she was just three years and nine months old. Stage IV neuroblastoma. The doctors told me she only had days — maybe 10 to 14 at most. I never told anyone that. I just kept saying, over and over: “Maya will be okay.” Eighteen months of brutal, relentless treatment followed. And then, in September 201

Caregiving Doesn’t Come With Sick Leave Tuesday 30th December 2025 On top of everything else, my own body waved yet another white flag. A UTI that’s been coming and going for three weeks finally forced an e-consult and a walk to the local pharmacy. Three days of Nitrofurantoin, morning and evening, prescribed and collected. A small thing on paper — but only possible because a kind HCA stayed with Maya in the cubicles while I walked the nearly mile from GOSH. One of those much