Tuesday 2nd & Wednesday 3rd December 2025 I hadn’t slept all night. Monday night, 1st December, was chaos. Maya was supposed to have 1:1 nursing — that’s what her condition requires. But her nurse had been allocated another critically unwell child to care for… because of staff sickness. Machines alarming… 6 IV drip machines, sounding like an orchestra… my child needing constant care… and only one pair of hands to do the job of two. I helped as much as a mother could — despera

🗓 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

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

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

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

Last night, 15th October 2025, was one of those truly magical nights for Maya — and honestly, it was so hard to get her to leave! She knows she’s going to miss the next event, which really broke her little heart 🥺. With her CAR T-cell therapy coming up at Great Ormond Street Hospital (28th October–18th November), the next few weeks are going to be intense. The treatment is incredibly demanding, and she’ll be closely monitored in ITU. But last night, for a few precious hours,