The Setback We Feared…

dellanienash9
Nov 22
3 min read

….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 exercises will help her one day stand and walk again, then we’ll do them every chance we get. She had good daily bed bath today, mouth care, and I’ve been moisturising her lips and skin constantly to keep her comfortable and protected. The ICU nurse always lubricate her eyes two-hourly.

Also today (1:30pm), we managed to slip out to Coram’s Fields, where Solving Kids’ Cancer Charity were holding an art workshop for Neuroblastoma families — and by chance, it was right opposite GOSH.

Terry and I went over to see the familiar SKC team, share a warm cuppa, and catch a few precious moments of normality. They handed us two boxes of Domino’s pizza, but honestly, it was the hugs — the real, tight, needed hugs — that meant the most.

We’re both running very close to the edge these days, but somehow we held it together. We smiled, we chatted, and for a short while, we felt supported in a way we didn’t realise we were craving. Some days, it’s moments like these that keep us going.

This Saturday, Maya didn’t need any oxygen and wasn’t requiring “intensive care” airway support. With ICU already admitting two very sick little ones who needed intubation, there was talk of sending Maya back to Lion Ward — but only if nursing capacity and cubicle space allowed.

Even though ICU were saying she was “stable” from an airway point of view, Oncology reviewed Maya’s afternoon bloods — rising ferritin, and her NT-ProBNP doubling to 2500+. They reminded everyone that ICANS behaves like waves: improvement, plateau… then sometimes sudden deterioration. It’s the unknown overnight pattern that scared them most.

So at around 4pm, after some back-and-forth, Oncology asked that Maya stay in ICU one more night.

Just in case.

Because if she deteriorated on Lion Ward, it could be catastrophic.

And thank goodness they made that call ‼️

By 8pm, Maya suddenly needed suction after suction. Her throat and chest were full of secretions, and every time her ICU Night Nurse tried to clear them, her sats dropped — even down to 84%. She needed Optiflow up to 80L just to keep going. It was terrifying!

Tonight proved she’s nowhere near ready to de-escalate.

Our lovely friend Jo (Joanne Dolan) visited this evening, bringing her sunshine, positivity, and stories about her fur babies, Lola and Emma.

And even through everything, Maya recognised Jo’s voice — little flickers of sound, tiny eye movements. It meant the world. We’re so lucky to have friends who show up with love when we need it most.

I wish I could say Terry and I could sleep tonight, but we won’t. We lie here praying for her breathing to settle, wishing this nightmare would release our baby girl.

People keep saying I’m strong — but inside, my heart feels like it’s breaking over and over again. 💔💔💔💔💔

Maya doesn’t deserve a single second of this. Life can be painfully unfair… but giving up is not an option for us.

We draw our strength from all of you — your love, your messages, your prayers, your shares, your generosity.

Please hold your loved ones extra tight tonight. Kiss your children a little longer.

You don’t realise how lucky you are until health is taken away.

Thank you, from the bottom of our hearts, for standing with Maya.

Please keep sharing, supporting, and donating — it is your kindness that keeps us going, truly.

To those that have asked:

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

Santander

D C Nash

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