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On Friday 22nd August, Maya had the whole-body MIBG scan. In medical language, the report was complicated. In simple terms, it told us something devastating: Maya’s neuroblastoma is active again and has progressed. The tumour we already knew about near the lower left side of her chest and ribs has grown significantly and become much more active. But it isn’t just there. The cancer has also shown itself in several of Maya’s bones — including her skull, shoulder, right upper ar

25.8.2026 It’s just… not the news we were begging to hear. 💔 Honestly? I sometimes wonder how many times a parent’s heart can break apart—and still somehow piece itself back together just to keep standing. Maya had her MIBG scan on 21st August, and it showed MiBG activity right back where that lesion was—behind her ribs, close to her spine—back in August 2025 before she started Car‑T therapy. And what breaks my heart most? There are new spots showing up elsewhere too. Next u

Fifteen Weeks Home… Help Us Make Maya’s 13th Birthday Magical 🎂 For anyone who’s new to our journey, Maya came home on 30th March after spending five long months in Great Ormond Street Hospital [GOSH]. She’d been admitted on 28th October 2025 for CAR T-cell therapy following her third relapse of stage IV high-risk neuroblastoma. The treatment that was meant to destroy her cancer almost destroyed her instead. Maya developed severe Cytokine Release Syndrome, Grade 4 ICANS (bra

12/7/2026 Today our hearts are so full. A huge thank you to Leigh Blackburn Fitness for organising today’s “Move For Maya” fundraiser on 12th July. Thanks to Leigh, her partner Chris and every single person who took part and donated, an incredible £275 was raised. This money will help cover the travel costs as Maya begins Week 7 of her intensive neuro-rehabilitation programme at The Children’s Trust, Tadworth, Surrey. Every weekd we make the long journey because giving Maya t

😩 So, I’m now 24 hours post-op following my arthroscopic subacromial decompression — which, in plain English, means they shaved bits of my shoulder bone to create more space and stop everything rubbing together. The surgery itself went well. The recovery? That’s another story. I’m taking Co-codamol 30/500, two tablets every six hours, exactly as prescribed. The problem is that it barely takes the edge off the pain. The stabbing breakthrough pains are relentless and sharp eno

Shoulder-ing On 💪 Well, today was my turn to be the patient. Wednesday 10.6.2026 I was admitted at 4:30pm for my right shoulder operation after years of wear and tear. Apparently, spending half a year lifting, supporting, and caring for a disabled 12-year old Maya isn’t the best thing for your already fragile shoulder joints. Who knew? 🙄 By 6:45pm, I was heading into theatre for an Arthroscopic Subacromial Nerve Decompression. And of course… the anaesthetic nurse was Filipi

9th June 2026. Today marks 71 days since Maya came home from hospital, and 71 days without access to a bath because the equipment she urgently needs still hasn’t been provided. On 30th March 2026, after five months in hospital at Great Ormond Street Hospital, Maya finally came home. People heard the word “discharged” and assumed that meant the nightmare was over. It wasn’t. Maya went into hospital as an able-bodied little girl. Maya came home severely motor paralysed. Just l

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