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Before we begin this update, we wanted to apologise for being quieter than usual on Maya’s page. The reality is that since Maya was discharged home on 30th March, life has looked very different for our family. Our new normal involves navigating life with a profoundly disabled child whilst simultaneously fighting for the basic services, equipment and adaptations she needs simply to live safely and with dignity. Much of our time has been spent attending appointments, making pho

Some people don’t just “care “— they “take action”. And Queen’s Nurse Sharon Lee has done it again. With heart, initiative, and that unmistakable quiet determination, Sharon organised a collection bucket and raised an incredible £500+ in support of Maya Nash Cancer Journey. No fuss, no spotlight-seeking — just pure compassion turned into meaningful action. This special moment was made possible thanks to Ollie from My Guitar Club, who warmly accommodated this mini charitable e

Dear PALS Team - Royal Marsden Hospital Sutton Re: Maya Nash - DOB 23.7.2013 | Hospital number ****** I am writing to request your urgent assistance regarding hospital transport arrangements and care coordination for my 12-year-old daughter, Maya, who has complex mobility needs and is dependent on a wheelchair for mobility, following serious concerns about her safety, dignity, and overall wellbeing during her appointment at The Royal Marsden Hospital, Sutton on 29th April 202

We are completely blown away and so incredibly grateful. Anthony — you absolute superstar — shaved your head to raise money for Maya, with a goal of £200… and you’ve raised an amazing just a fraction below £1300!!! 🥹✨ What you’ve done is so selfless, brave, and kind. It means more to us than words can ever express, especially during such a difficult time. Your support, and the love behind it, truly lifts us. We are also incredibly grateful to the Headteacher of Lyminge Prima

Maya’s Wheelchair Handover Appointment Monday 20th April 2026 Monday was meant to be a straightforward day. An 11:30am wheelchair handover appointment at Inca House in Ashford, expected to take around 60–90 minutes. Simple enough on paper. Because we were offered free NHS hospital transport via G4S, we were asked to have Maya ready by 9:30am. Naturally, Maya was ready even earlier—positioned in her wheelchair by 9:15am, organised and prepared for whatever the day would bring.

It started with a name. A name we had never seen before popped up on Maya’s appointment: Professor Darren Hargrave. Alongside Karin Straathof—who we do know. Maya’s Car T Cell consultant. But that new name? Professor Darren Hargrave. It threw me. So of course, I Googled him. And straight away—brain tumours, spine tumours, paediatric neuro-oncology. Basically everything you never want to read when your child already has cancer. And just like that, my brain went into overdrive.

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 —