🩷 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 —

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

Tuesday 16th December was a reminder that recovery from ICANS is never a straight line. Maya had been doing so well on Monday with her passive bike ride on the hospital bed, and then at 4:30am the next morning, she spiked a temperature above 38°C and woke me up moaning and groaning. https://share.icloud.com/photos/0e72k9RY-PrHY7pE7-PEdzeuQ Monday night had already been rough—the IV machines never stop. Each has two alarms: one saying “Near End of Infusion” (which could be 3,

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

When Hope Looks Like Ten Minutes Upright Monday, 8 December 2025 Our days are full of things we once took for granted — things most families never have to think twice about. Sitting. Standing. Blinking. Speaking. Maya can no longer do any of those things on her own. She can’t move her arms or legs. She can’t hold up her neck. Her tiny body lies still, a prisoner of the damage caused by treatment that was meant to save her life. She rarely blinks now — and when she does, it’s

I left ICU on Thursday night, close to 11pm, after a long, reassuring chat with Maya’s night nurse. I tried to find comfort in knowing she would be watching over my baby girl — and she really did. Friday morning was the first time in a very long time that I slept without interruption… even if it was only about four hours. I spent the rest of the morning doing admin on my phone — cancelling and postponing all of Maya’s outpatient appointments: SALT, physiotherapy, her annual E

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

It is full-on here… A brief update on Maya. Maya developed severe ICANS (neurotoxicity) following her CAR-T cell infusion on 4th November, causing significant brain inflammation and a markedly reduced level of consciousness. She is currently unable to wake up properly — only very fleeting moments of 5 seconds at best — and she has lost the ability to speak and walk. She only responds to pain. She received the highest level of care in ICU with intensive immunosuppressive and n

Immune effector Cell–Associated Neurotoxicity Syndrome (ICANS) Our beautiful Maya has reached one of the most difficult parts of her CAR-T cell therapy journey. Over the last week or so, she developed severe ICANS, a complication where the brain becomes inflamed from the powerful immune treatment that is fighting her cancer #neuroblastoma. Because of this inflammation, Maya has been experiencing: confusion struggling to speak tremors agitation seizure-like jerky movements and

https://share.icloud.com/photos/056JOasGIGlmttZmzEJqFMl8Q 🩷 Maya Update – Monday, 10th November 💜 After one Sunday night of sleeping at home following my MRI yesterday (Sunday 9th Nov), I’m now back at Great Ormond Street Hospital (GOSH). Maya is very poorly, so I’m staying overnight with her again. My husband Terry isn’t coping well. He’s emotionally exhausted after a long, difficult Sunday night on his own with Maya. He’s currently staying overnight nearby at the Family A

For the past one week (28th October to 3rd November), Maya’s been hooked up to an IV machine — receiving Fludarabine and Cyclophosphamide chemotherapy alongside 24-hours IV fluids and IV antisickness. Every drop going in and out of her little body is monitored, so every time she needs a pee or poo, she has to catch it in a pot. [Fluid balance: input vs output]. Saturday 1st November, nurse was way too busy in the morning which meant she was two hours behind in giving Maya her

Three weeks to be confined in hospital — and still, this little warrior keeps shining through it all. 🩺 Friday 31st October: IV fluids all day. Cyclophosphamide (1 hour) + Fludarabine (30 mins). She missed celebrating her sister Lola’s Halloweeny birthday again, just like last year — but still found a way to smile. 🩺 Saturday 1st November: IV fluids all day. Cyclophosphamide (1 hour) + Fludarabine (30 mins). 🩺 Sunday 2nd November: Bloods, fluids finishing after 24 hours, a

They say time heals, but how do you heal from watching your child go through this again and again and again??? Another bone marrow biopsy. Another picc line insertion. Another anaesthetic. 28.10.2025 Another day wishing I could take her place. 💔 #HeartbrokenFather #ChildhoodCancerAwareness #Neuroblastoma #GOSH #WhyHer #DadLove #UnfairLife #CourageThroughPain #ForMaya P.s. There are supporters who don’t use Paypal. So for anyone who would like to donate directly: Santander b

Caring for your child becomes everything. You are her teacher, her friend, her playmate, her taxi driver — you are her whole world. You advocate for her every day — explaining to doctors what hurts, when it started, and how often it happens. You learn about medicines you’d never heard of until they’re being pumped into your baby. You catch puke. You communicate endlessly. You might still be parenting another child, trying to juggle work, life and friendships, or pleading with