ICU Update: Maya’s Fight for Breath — and for Life

dellanienash9
Nov 22
3 min read

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 EHCP review. Life outside ICU keeps going, even when yours feels like it’s paused.

But the dizziness hit again. I used to struggle with vertigo and the moment that familiar spin started creeping in, it scared me. My body is clearly carrying all of this with me.

Just as I was putting my jacket in the locker and washing my hands — always “Bare Below Elbows” in ICU — my phone rang. It was Maya’s nurse. Instantly the psychosomatic symptoms rushed in: palpitations, clamminess, knees like jelly. But this time, the news was good — Maya had been extubated. Hooray.

She was holding her oxygen sats, and when I walked in and saw her with just the NG tube on her little nose, my heart lifted. But the moment was short-lived. Two hours later she began desaturating again and needed 2L of oxygen. All afternoon they worked to wean her down — from 2L to 1L — and by the time we left that night, she was on 0.5L. Progress, but fragile.

Then came another chest X-ray — I’ve genuinely lost count now — because she was struggling with thick secretions and needed frequent suctioning. When we saw the X-ray machine being wheeled into her cubicle again, that familiar helplessness washed over us. It cuts right through you as a parent.

Terry came in the afternoon to spend time with her and with me. There’s so much for both of us to process… just way too much. He finds it incredibly hard to accept what has happened to Maya — and so do I — but one of us has to keep carrying the light. Maya needs healing energy around her, not the weight of guilt or blame. She needs joy, softness, hope. She needs us steady.

Saturday 22/11/2025: Today was, thankfully, a better day for her airway management. For now, it’s constant reassessment, step by step, breath by breath. Neurologically, she’s on everything she needs to bring down the inflammation caused by CRS and ICANS. Now we wait… and we hold on.

CRS : Cytokines Release Syndrome

ICANS : Immune effector Cell–Associated Neurotoxicity Syndrome

If you believe the world needs to hear Maya’s inspiring, brave fight for life, please share her story far and wide.

The more people who know her, the more love, strength and support surrounds her.

Childhood cancer steals so much, but it cannot touch Maya’s spirit — or our family’s resilience. We bend. We break. We rise. We keep going.

Maya deserves nothing less.

Because Maya is worth every battle.

T-h-a-n-k-Y-o-u-A-l-L for standing by us and for standing by Maya. Your donations mean the world to us.

To those that have asked:

PayPal to dellanie_nash@yahoo.co.uk (as a gift)

Santander

D C Nash