🩷 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 —

🩷 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

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

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

Thursday 11th December brought warmth into an otherwise heavy place. Tiffany from The Kent Review came to visit us, arm full of goodies and kindness. We talked about the little tribe that forms here — mums instinctively finding one another, lifting each other when the weight becomes unbearable. I often come across strong and confident, and maybe that’s because survival demands it. But beneath that surface, I carry the same fear as every other parent here. We’re fighting a thi

🎄 Tuesday 9th December — Christmas Songs & Big Procedures 🎄 Today started with soft Christmas songs playing in the background — a small reminder that the festive season still exists outside these hospital walls. Maya enjoyed a gentle massage, reflexology and plenty of moisturiser to keep her little body comfortable. OT came to help, but the sling we needed hadn’t been washed yet, so we focused on stretching exercises and a little bit of bubble play instead. Simple moments t

Facebook memories hit me hard this morning. Baby-Maya, tiny and sweet, completely unaware that neuroblastoma was already in her little body. Then I think of the photo from four weeks ago, right before her CAR-T infusion. Taller. Braver. Stronger than any kid should ever have to be. And then today’s photo. My 12-year-old girl with a nasal cannula, an NG tube, already twice admitted to ICU, seconds before physio had to suction her again as ICANS keeps fighting its ugly fight. T

Today has been another heavy day in Maya’s journey. Although her neurological status hasn’t changed — she’s still only responsive to pain and doesn’t respond to voices — her oxygen needs are not “intensive” enough for ICU. She doesn’t need Optiflow, but she still depends on oxygen via nasal cannula or mask. She continues to have apnoea spells, desaturating to 81%, usually triggered by secretions or simply by being repositioned to relieve pressure off her bony areas: sacrum, s

….and Why We’re So Grateful She Stayed in ICU. Saturday 22/11/25 Maya stayed stable throughout the Friday night, and she’s managed all of this without sedation, which feels like a small blessing in the middle of everything. Terry and I kept to the two-hours-on, two-hours-off leg splint routine, and every time they came off, I massaged all her limbs and did the passive physio the team taught me. Her muscles are wasting away now, and it breaks my heart — but if these little exe

Thursday 20th November 2025 Can you imagine how daunting it felt to sit in a meeting room inside PICU, alone, with four clinicians — Maya’s consultant, the research doctor, the ICU doctor and her PICU nurse. Four walls that have heard far too many heartbreaking conversations about children. After a few minutes of niceties, the consultant’s face turned serious. My heart was racing. She summarised everything from the CAR-T cell infusion on Tuesday 4th November, right up to Maya

Maya Update – 20 November 2025 I’ve added stickers over Maya’s face to soften the photos as I know how hard they can be to see — but I also want to keep everyone updated as clearly as possible. 🫁 Scans & Tests Chest X-ray (18/11): Clear. CT scan (18/11): No swelling, but some new changes they’re watching closely. MRI brain & spine (with contrast 19/11): Again, no swelling, but new changes similar to the CT. EMG/Nerve conduction studies (19/11): Inconclusive because she was d

🌼 Awareness & Gratitude 🌼 When I swapped with Terry on Friday night (31st October), I noticed Maya’s PICC line site looking red, sore and Maya was shivering (rigors). It had only been inserted a few days earlier (28th October) under general anaesthetic, so some discomfort was expected — but as a parent, you just know when something doesn’t look right. I raised my concern with the nurse looking after Maya, and I’m so grateful they took it seriously straight away. They checke