74% Oxygen. Blue Lips. And a Love That Won’t Break.

Wednesday 26th November 2025

Today terrified me in a way I can’t shake.

During chest physio, while they were manoeuvring Maya to help shift the secretions sitting stubbornly in her lungs, she suddenly desaturated… all the way down to 74%.

Her face turned blue.

I froze. My whole body went clammy. My heart felt like it dropped straight through the ground. I genuinely thought I might vomit.

It’s a sight no parent should ever have to witness — yet here on Lion Ward, this has become our reality.

Somehow, in the middle of the chaos, life kept moving.

I had a Teams meeting with Maya’s Speech and Language Therapist and Sue, her Home Education Teacher. It was surprisingly productive — a rare slice of hope about adapting Maya’s speech and language care plan for where she is now.

Leon and Ellie visited too, bringing a softness that only siblings can. They read books, told her silly jokes, and filled the room with familiar love.

Then came Dr Ted the therapy dog, tail wagging like a tiny miracle. Moments later, the musical angels arrived and played one of Maya’s favourite tunes — “Country Roads, Take Me Home.” And sweet Hannah, the Music Therapist, offered Maya a soulful, grounding presence through song.

For a moment, the room felt gentler. Almost safe.

The Consultant touched base with me — not much new in terms of answers, though her blood tests seem to be shifting in the right direction. But ICANS remains stubborn and cruel. Maya is still deeply sleepy, only responsive to pain. Her weak cough reflex has weakened even more. Her eye tracking — less today than yesterday.

Neurological side effects are the cruelest: hope and heartbreak in the same breath.

With Leon and Ellie around, I managed to slip out for a short swim. I cried in the pool. Cried in the steam room. Cried in the sauna.

It’s unbearable watching your child suffer like this — and there are moments where I genuinely cannot breathe at the thought of why any child has to endure such pain.

Here on Lion Ward, babies as young as three months up to teens of seventeen are fighting battles most adults could never comprehend. Diagnoses you have to Google. Treatments you wish you never needed to learn.

And if Maya’s journey is one of the first times you’ve heard the word Neuroblastoma, then please know how fortunate that makes you.

Only recently, Alan Carr — The Funny Guy — won The Traitors and donated every penny of his winnings to Neuroblastoma UK, because even he recognised how devastating and underfunded this cancer is.

Just after 5pm, Maya’s heart rate began climbing again. Then the whingeing started not long after that — and suddenly chaos was back. Chest Physio rushed in once more, manoeuvring Maya’s fragile body, nebulising her, suctioning her.

She finally settled around 6:30pm.

Right at this moment, two dear friends — Maria and Yasmin — came by. Their presence lifted the heaviness just a little. Yasmin read stories to Maya, and for a few moments, the room felt warm again. A sliver of light in a very dark evening.

But by 11pm… everything unravelled again.

The vicious cycle returned!!!

And I found myself muttering to myself:

“How much longer does my little girl have to suffer?” And I held back the tears that really wanted to flow out of my eyes.

Thank you — each and every one of you — for the love you send our way. For holding us in your thoughts. For reminding us that even in the darkest hours, we are not entirely alone.

Maya truly is the strongest girl I have ever known.

As my 50th birthday approaches 27th November, I don’t want any gifts. I don’t want any grand celebrations.

What I really need this year — the only gift that would mean anything — is Maya’s cure from childhood cancer.

We are very grateful for all your unconditional love, your never-ending support, and your initiatives to help us carry the crushing financial burden that childhood cancer brings. If you can share Maya’s story, donate, or simply send a kind message, please know how much it strengthens us.

Please share Maya’s story far and wide.

Let her strength be seen. Let her fight be known.

And if you feel moved to give us the gift of support — thank you from the deepest part of my heart.

With love, from Maya’s mum. And Dad xx

To those that have asked:

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

Santander

D C Nash

Sort code 09-01-36

Account 4957 9984

Reference: Maya’s Journey