Heartbreak Next Door But Holding Our Hope In Fragile Hands

Thursday 4th December 2025

8 days without a bowel movement… and then the Docusate kicked in a little too well. After two days of loose stools, Docusate is now just PRN (as needed). Poor thing — Maya’s little body can’t catch a break.

This morning, Maya’s port access came loose, so her TPN had to be stopped. (Total Parenteral Nutrition) TPN is liquid nutrition given directly into the bloodstream when a person can’t eat or absorb food normally.

Maya was re-accessed later, but it needed “skin rescue” because the dressing has made the skin over her port so sore and raw. During the gap, she was given IV fluids — same volume and rate of her TPN to keep her nutrition steady. Her ankle cannula also failed, so she needed a new one inserted. More pokes. More discomfort. But Maya handled it like a warrior.

At 11am, Maya had physio and was supported sitting at the edge of the bed for 20–25 minutes. She worked so hard to hold herself up — head, neck, trunk all needing full support — but she did it. We think her little moans towards the end were her way of saying, “I’m tired… but I tried.”

At 1:30pm, Maya had school: a sensory story called “The Deep Blue Sea”.

Then OT at 2pm — hoisted Maya into a tilted chair for 55 whole minutes (target was 45!). Maya moaned throughout, but she stayed there. That’s still huge progress.

Maya isn’t really awake — only flickers of recognition or a moment of eye tracking before drifting back into her ICANS sleep, eyes still open. Eye lubricant every two hours to protect them. No desaturations though (desaturation means drops in the oxygen level in the blood below what’s considered safe or normal).. Hooray!

And the Bair Hugger blanket is only put on when required which is becoming less often, yay! Another win!

Nanny Dora and Grandad Mike came for cuddles today. Daddy Terry came along too for the weekend. We sang and wiggled and played her favourite Christmas song, “Last Christmas”. She stayed calm through it all — we hope she could feel the joy.

Later, a full bed bath, mouth care, all the daily routines. Her face puffed up unexpectedly — likely from the IV fluids while her TPN was off. Doctors are watching closely; diuretics may be needed to avoid fluid on her lungs again. They’re holding off overnight so she doesn’t have endless wet nappies.

And then… the kind of moment that changes the air in the room. 💔

A neighbouring mum who signed my birthday card too — who only yesterday was long chatting with me and making plans for her baby’s bone marrow transplant — collapsed into my arms, sobbing. Overnight, everything changed for them. The AML took over suddenly and violently. Baby less than a year old was only diagnosed in October this year, less than two months ago. Acute Myeloid Leukaemia (AML) is a fast-growing cancer of the blood and bone marrow, where immature white blood cells multiply uncontrollably and stop the body from making healthy blood cells needed for oxygen, immunity, and clotting.

They were told maybe 5–7 days… but Mum fears hours.

Her baby is in so much pain, won’t see first birthday.

There are no words for that kind of injustice.

I held neighbour Mum tightly, rubbing her back as she cried — all of us watching, helpless. One family’s future full of hope yesterday… now holding unbearable pain today. 😩💔

And then in the meantime, we turned back to Maya.

We kept singing. We kept dancing.

Because she is here.

Because she is still fighting.

Even if her brain is resting in darkness right now, Maya is fighting.

Our hearts ache for that family — and for every family here.

But tonight, we are overwhelmed with gratitude that our girl Maya is still here with us. We know things can change in an instant.

We live on a tightrope, breath by breath…

But where there is love, there is always something worth holding on to.

Life can be unbearably hard and unbelievably beautiful — all on the same day. Even in grief, gratitude survives. Hope is a stubborn thing… it refuses to let go.

And so do we.

One day. One hour. One tiny miracle at a time.

Every little donation helps us give Maya the care, therapy, and support she needs on her journey — thank you for being part of her fight.

To those that have asked:

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

Santander

Dellanie Nash

Sort code 09-01-36

Account 4957 9984

Reference: Maya’s Journey

A huge thank you to everyone who placed bids in the “Bids for Maya” Auction and to all our regular supporters — your generosity means the world to us and to Maya.

T-H-A-N-K-Y-O-U xxxx