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

Tuesday 25th November has been another REALLY heavy day for Maya. Her post-ICU instability is showing again, and it honestly feels like we’re walking on eggshells with every breath she takes. Her desaturations today proved just how fragile she still is. During the weekdays, Maya will have had visits from the Research Oncology Team, the Ward Doctor Team, CSP (Clinical Site Practitioner), ICU Team, Physio/OT, Play Therapists, Pet Therapy, Music Therapy, Hospital School, and the

….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

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

On Monday, 13th October 2025, Maya had a physiotherapy appointment at The William Harvey Hospital. The initial reason for her referral was knee pain—something that, thankfully, has now resolved. So naturally, the physiotherapist said she was ready to discharge Maya. But as any parent of a child with cancer knows, recovery isn’t that simple. I gently explained that Maya’s challenges go beyond knee pain. Years of chemotherapy have left her with weakness in her limbs and stabili

“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