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,

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

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

🌼 Awareness & Gratitude 🌼 When I swapped with Terry on Friday night (31st October), I noticed Maya’s PICC line site looking red, sore and Maya was shivering (rigors). It had only been inserted a few days earlier (28th October) under general anaesthetic, so some discomfort was expected — but as a parent, you just know when something doesn’t look right. I raised my concern with the nurse looking after Maya, and I’m so grateful they took it seriously straight away. They checke

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