Sleepless Nights, Tiny Wins, Giant Courage

dellanienash9
2 days ago
4 min read

Updated: 2 days ago

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 — desperate, exhausted — and I knew it wasn’t right.

The Ward Manager later thanked me for writing an official email, for speaking up. It turns out my voice helped the nurses escalate the staffing crisis to the Trust level. If staffing drops to amber again, a system should have pulled nurses from other less demanding wards to help.

I really hope the message was heard… because no parent should watch their child’s care stretched that thin.

TUESDAY 2nd December 2025

— A Busy Day of Fighting Forward

Despite the night, Tuesday was full of action:

• Physio supported Maya to sit up and start mobilisation.

• Occupational Therapy tried to get her into a chair again — but still no correct sling size!

• Her teacher, Sue C, visited with our dear friend Roz — another friend and a French midwife who came to see me in Ashford when I gave birth to Maya 12 years ago. At that time, she brought Maya the Bee, the teddy she gifted Maya the day she was born. Full circle moments like that… they hit the heart. ❤️

Whilst Sue C and Roz were spending time with Maya, I even managed a short break outside — fresh air, a couple of T-shirts (because laundry at GOSH is a mission of its own!).

Then Speech & Language Therapy (SALT) made a brilliant plan:

Ways we can help Maya understand the world again — and slowly begin to show us what she wants or feels.

Maya had a full bed bath, mouth care 3–4 times today. I spoke with the night nurse about the frightening shift the (Monday) night before.

But Tuesday night?

So much better.

The nurse set alarms (for herself) to anticipate every IV change — no loud alarms blaring endlessly this time. With the amount of IVs Maya has… that’s a HUGE thing.

A quote that kept running through my head:

“Small wins are still wins. And sometimes they are everything.”

WEDNESDAY 3RD DECEMBER 2025

— A Day of Progress

8:30AM, knock on door, Orthotics arrived to take plaster casts for customised leg splints.

Then things really took off — I was washing sticky cast residue off Maya’s skin when PT/OT arrived. And for the first time in weeks…

Maya sat in a chair for 25 whole minutes!

Supported — but upright.

Breathing well.

No desaturation.

A miracle wrapped in a milestone.

Her neck, limbs, torso — still without strength. But support + courage carried her.

Grinch and another characters came to visit (is that Storm Trooper and who’s the other one?)

Maya’s NG tube came off today — the eye lubricant made her skin so oily that the tape holding it in place just wouldn’t stick anymore.

So for the first time in a long while… she had nothing on her face.

And of course, I had to capture the moment — a beautiful photo of Maya tube-free! 📸

Visitors & therapy filled the day:

🎵 Music therapy — “Take Me Home, Country Roads,” “Three Little Birds,” “Wonderful Tonight,” and Last Christmas — Maya’s favourites.

👋 Visits from our friends Maria & Yasmin

🧠 Neurologists assessing nerve responses

🗣 SALT returned with communication picture cards

🎤 Pete from our karaoke family came — we even had a sing-along! Her nurse was laughing with us. Laughter in a hospital room — another victory.

Then came the consultant.

The next step:

MRI of head, trunk and abdomen

Lumbar puncture

Bone Marrow Biopsy and Aspirates

All under GA

Maybe tomorrow 4th… maybe Friday 5th… maybe early next week.

This will tell us if the CAR-T cells are attacking neuroblastoma the way we so desperately hope. And how much brain inflammation are still visible on the imaging.

Three weeks ago… we only prayed she would survive the hour, the night, the week.

Next week… we will learn if she is beating cancer again.

But we’ll let tomorrow worry about itself.

Today, Maya sat tall in a chair.

Today, she fought.

Today, we celebrate small miracles.

When love surrounds you from every corner of the world, even the smallest step forward becomes a triumph.

Maya is a fighter — and her story deserves to be known far and wide.

Thank you for continuing to lift us. We feel every message, every prayer, every hand holding ours through the dark.

We celebrate each small win — because they are building her comeback.

#SmallWinsBigFight

#MayaStrong