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

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

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