Today has been another heavy day in Maya’s journey. Although her neurological status hasn’t changed — she’s still only responsive to pain and doesn’t respond to voices — her oxygen needs are not “intensive” enough for ICU. She doesn’t need Optiflow, but she still depends on oxygen via nasal cannula or mask. She continues to have apnoea spells, desaturating to 81%, usually triggered by secretions or simply by being repositioned to relieve pressure off her bony areas: sacrum, s

Maya Update – 20 November 2025 I’ve added stickers over Maya’s face to soften the photos as I know how hard they can be to see — but I also want to keep everyone updated as clearly as possible. 🫁 Scans & Tests Chest X-ray (18/11): Clear. CT scan (18/11): No swelling, but some new changes they’re watching closely. MRI brain & spine (with contrast 19/11): Again, no swelling, but new changes similar to the CT. EMG/Nerve conduction studies (19/11): Inconclusive because she was d

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

“We are pregnant.” When a couple announces they’re expecting, they don’t say, “I am pregnant.” They say, “We are pregnant.” We. Because soon, they will become parents. And soon, that little life will become a child, a sibling, a grandchild, a great grandchild, a nephew, a niece, a godson, a goddaughter… and in turn, one of them will become a big brother, a big sister, an auntie, an uncle, a grandparent, a godparent. We carries the ripple of love that extends beyond the parent