🩷 Gratitude Post 💜 From the very bottom of our hearts, the Nash family would like to say the biggest thank you to Queen’s Nurse Sharon Lee and John and Steve of BM Ambulance Service for making Home Leave for Maya possible today. In less than 24 hours, everything was arranged with such professionalism, kindness and efficiency. Because BM Ambulance is CQC-registered, the (Great Ormond Street Hospital) GOSH Research Team were able to approve the transport — which meant Maya co

🎄 Tuesday 9th December — Christmas Songs & Big Procedures 🎄 Today started with soft Christmas songs playing in the background — a small reminder that the festive season still exists outside these hospital walls. Maya enjoyed a gentle massage, reflexology and plenty of moisturiser to keep her little body comfortable. OT came to help, but the sling we needed hadn’t been washed yet, so we focused on stretching exercises and a little bit of bubble play instead. Simple moments t

When Hope Looks Like Ten Minutes Upright Monday, 8 December 2025 Our days are full of things we once took for granted — things most families never have to think twice about. Sitting. Standing. Blinking. Speaking. Maya can no longer do any of those things on her own. She can’t move her arms or legs. She can’t hold up her neck. Her tiny body lies still, a prisoner of the damage caused by treatment that was meant to save her life. She rarely blinks now — and when she does, it’s

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

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

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

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