The Things We Worry About Now Maya’s Journey — October 2026 The last time I wrote on here was 29th August 2026, in a blog called “It Had Never Reached Her Liver Before. At that point, we were trying to process the fact that Maya’s neuroblastoma had now reached her liver. Since then, so much has happened that it is difficult to know where to begin. And honestly, I don’t think any parent should ever have to write an update like this about their child. We had to stop neuro-rehab

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

🎄 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

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