5th March 2026 00:16 Dear Research Team, I hope you’re all well. I’m writing to ask, as gently and realistically as possible, whether there is any indication that Maya may be able to come home by the end of March — ideally by 30th March at the latest. I completely understand that discharge decisions are complex and must be based purely on Maya’s clinical needs. We are so grateful for everything you’ve done and continue to do for her. We never anticipated that we would still b

….and Why We’re So Grateful She Stayed in ICU. Saturday 22/11/25 Maya stayed stable throughout the Friday night, and she’s managed all of this without sedation, which feels like a small blessing in the middle of everything. Terry and I kept to the two-hours-on, two-hours-off leg splint routine, and every time they came off, I massaged all her limbs and did the passive physio the team taught me. Her muscles are wasting away now, and it breaks my heart — but if these little exe

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

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

My right shoulder has been in pain for several years now — it started back in the summer of 2020. As a parent of a child battling cancer, I’ve always put myself last. Tonight, the pain is so severe 😩 that sleep has run away from me. I’m waiting for an MRI scan, hoping the orthopaedic specialist can finally create a care plan for me. But truthfully, this physical pain is nothing compared to the soul pain that childhood cancer brings. 💔 There’s nothing harder than begging for