🗓 Saturday 29th November 2025 Today was a quiet one for Maya. She slept for most of the day, with her leg splints on for two hours and off for two hours, just as physio planned. For a moment, it looked like her thermoregulation was finally improving — she managed to keep her temperature between 36.8–37.1°C without the Bair Hugger blanket. But by night, her nurse recorded 36.1°C, and the warming blanket had to go back on. A reminder that recovery from ICANS isn’t linear. Her

ICU Update – Sunday Evening 23/11/2025 Last night was another long, heavy night for our girl. After a stable Saturday, Maya suddenly slipped back into breath-holding and desaturations, dropping to 84% at times. She needed suction after suction; her chest sounded thick with secretions, and the team increased her Optiflow to 70L/min just to support her. But by 6pm tonight, she has fought her way down to 30L/min, now on air (21%), which feels like a small but hard-won victory. M

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

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

🌈 Appreciation Post 🌈 To all the amazing people who help make long hospital days a little brighter — thank you from the bottom of our hearts. ❤️ Although Maya continues her Zoom sessions with her wonderful teacher, Sue, she’s also been surrounded by so many caring souls who lift her spirits and keep her smiling through the hardest days — the incredible team at Spread A Smile Charity, the therapy dogs who bring comfort and calm, the ever-patient play therapist, and the kind

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