All Posts

“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

Monday 29th December Today brought a welcome visit from Uncle Antony — Terry’s brother — a familiar face and a reminder of family, normality, and love in the middle of hospital life. Small visits mean a lot here. There’s also encouraging news on the medical front. Maya’s steroid dose (Methylprednisolone) is finally being reduced — down from 78–78 (morning and evening) to 39–39. If all goes well, by Friday 2nd January it will be 20–20. When Maya was very poorly after the Car T

I often wonder how a single parent copes on a children’s cancer ward. I guess the honest answer is: you rely on the nurses, the HCAs, and the call button when your own body gives up. They step in constantly, to keep your child safe while you gather yourself. And I’m deeply grateful that if I were to fall truly unwell, my husband Terry would drop everything and take over — that safety net matters more than I can ever say. Sunday 28th December — One of Those Quiet Days Sunday s

You’ll never guess what today’s wild agenda included… No, not cocktails or Boxing Day sales — welcome to “Maya’s Luxury Wellness Retreat”: Today’s programme featured (but what else would it be?) : • Full-body moisturising • Massage • Range-of-movement exercises • Ambient spa music (huge thanks to Grandad Mike for the JBL speaker — vibes matter) Honestly, if TripAdvisor reviewed hospital rooms, we’d be pushing five stars. https://share.icloud.com/photos/028tQxpUrHzbYkNZtNpci6T

A few nights ago, Maya spent most of the night doing this. She wasn’t upset or uncomfortable in any way. No signs of distress. She was relaxed, calm, almost serene. And then, every now and then, a sound would emerge. Gentle. Intentional. Not quite familiar, yet full of meaning. It was as if something that had been silent for a long time was remembering how to make itself heard. It felt like the beginning of her voice returning. Maybe not words yet, but the path toward them. H

Our Boxing Day 2025 was tender and full of little moments that somehow felt big. We spent a good part of the day on video call with my mother, aka Nanny Marsha, all the way in the Philippines (8 hours time difference), and with Lola too who was at the time in Kent. The four girls on the screen together. Different places, same love. Watching them smile, wave, and laugh through the screen felt precious. One of those moments you want to hold still for a bit longer. Terry even br

25th December 2025 — Christmas Day Christmas Day was gentle but full of meaning. We were grateful for free pastries and coffees at the Lagoon Restaurant while Maya’s HCA stayed with her. Spread a Smile charity came to lift the mood, and Thomas the therapy dog brought some much-needed joy — animals really do have a special way of helping, don’t they. https://share.icloud.com/photos/053WSkYCAG4zuvWM-6_VZL7ZA I didn’t wake up but I soon realised that Santa was indeed sneaking in

21st December 2025 – Sunday Our dear friend Jo (Joanne Dolan) came to visit Maya. Her visit gave me and Terry the precious opportunity to step outside the hospital for some fresh air. Something so small, yet so vital. We are incredibly grateful. Monday 22nd December A visit from my nurse colleague and friend Kirsty Hurd, along with our friend Suzanne Pearce. They arrived with Christmas goodies and kindly treated me to lunch. At the same time, Jerome (son #1) and his girlfrien