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It’s all happening! Thursday 16th April 2026- Today was one of those days where everything feels like it’s moving at full speed, and yet somehow you’re just trying to keep up, one step at a time. Maya, Daddy and Nanny Dora arrived at GOSH midday as planned. Maya had her port accessed again — the usual bloods, research bloods, and CAR T-cell bloods. It’s become part of our “normal,” if you can even call it that. She takes it all in her stride in a way that still amazes me. The

I saw the name “Demelza” on the envelope and my stomach just dropped. That word “hospice” associated with Demelza doesn’t come gently. It crashes in loudly. It felt final, felt terrifying. For a second, I couldn’t even breathe. I wish I could say I opened it calmly. All I’ve ever known Demelza to be is a place you go when there’s nothing left to do. So seeing that welcome pack, addressed to us… it felt like someone had stamped reality right across my chest. Like this is wher

How long is a piece of string? 🤷🏼‍♀️🧵 Apparently, that’s the consultant-approved answer when it comes to Maya’s recovery… But sorry, I’m not accepting that energy 🙅🏼‍♀️ Maya WILL walk again. I don’t know how. I don’t know when. But I know she will 💪✨ And last week? It felt like a tiny slice of “normal”life again… and honestly, it felt really good to be back 🥹 I got to do the job I actually love doing again 💻❤️ Saturday morning, I went on a proper morning walk with Ter

Last night, after the IV Ceftriaxone antibiotics kicked in, Terry started feeling a little better and he immediately tried to convince me he could self-discharge. 🙄 But I insisted he stay put until his blood tests, X-ray results, ECG report and a doctor had properly reviewed him and discharged him safely. Then, before those results had even come back, his temperature spiked again and he was shivering with rigors around 10pm — and I won’t lie, my worry was very real. When he

Sunday 22nd March 2026 Just when it feels like our family has already been carrying more than enough, this late afternoon has brought another sudden and frightening challenge. While I remain here beside our brave girl Maya at GOSH, Terry at home, working on the lounge flooring in what would become Maya’s bedroom, has unexpectedly become very unwell and is currently in A&E at William Harvey Hospital, where he is receiving treatment on an IV Ceftriaxone drip. He has had an ECG

5th March 2026 00:16 Dear Research Team, I hope you’re all well. I’m writing to ask, as gently and realistically as possible, whether there is any indication that Maya may be able to come home by the end of March — ideally by 30th March at the latest. I completely understand that discharge decisions are complex and must be based purely on Maya’s clinical needs. We are so grateful for everything you’ve done and continue to do for her. We never anticipated that we would still b

Charlie and Amelia 💔 💔 Two beautiful children was so lucky to know at Southampton Hospital during the Minivan clinical trial. Now both together again, both gone far too soon (within 8 months of each other). Both forever loved. 🕊️💔 Maya said she misses you both 😢 #Neuroblastoma #kidsgetcancertoo

A difficult but hopeful update on Maya 🎗️ The treatment that may be saving Maya’s life… is also the reason she is now disabled. That is the reality we are living. I know many people have been celebrating with us lately, and please believe me when I say — we are so deeply grateful for every prayer, every message, every donation, every share, and every single person who has stood beside our family. But I need to gently clarify something: Maya still has neuroblastoma. She is no

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 ar

Maya got the pot of mango she’d set her heart on. But as we passed the Free Coffee counter in Waitrose Bloomsbury (The Brunswick Centre), her sharp little eyes caught the Easter display. So we parked up her wheelchair right there. But here’s the thing — I couldn’t work out what she actually wanted. Easter egg? Easter bunny? Easter pens? Easter chicks? Everything looked like the thing. I picked up a little bucket filled with plastic egg-shaped containers, still unsure… and th

Sunday 1st March: Maya woke up full of excitement because Nanny and Grandad (Terry’s parents) were coming to visit. When you’re in hospital life, visits aren’t just visits — they are events. They are sparks of normality. They are something to count down to. And they didn’t come empty-handed. They brought Maya one of her own doctor’s kit set (from home) to go with her brand new baby doll Ellie’s doctor’s set she bought from Hamley’s yesterday. The joy on her face said everythi

Friday 27th February – A Very Long Day! So Friday was one of THOSE days! 10:30 Paraceramol and Antihistamine 10:30-11:30 Physiotherapy (Tilt Table standing up) 11:30 Maya had her Ruxolitinib infusion, and honestly, it pretty much took up the whole day — about five hours or so in total, including flushing the line that kept occluding. The Team started carefully. She had paracetamol and an antihistamine first, just to reduce the chance of any reaction. Then the infusion started

💖 The good news first: Maya’s body is showing signs of slow but steady recovery. Her platelets, which usually drop quickly after transfusions, are holding longer than expected. Her last transfusion was on Wednesday 18th February, and normally she would need another in 3–4 days. Over the past week, her platelets have been 33 → 30 → 29, and today they are 30 — yay! Her haemoglobin has been trying to be above 70 (78 → 71 → 71) for the past week as well. This suggests her bone m

🩷 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