Back Pain. Hip Pain. It’s Never “Just Pain” When Your Child Has Cancer

dellanienash9
Jan 27
2 min read

The Questions We’re Still Living With

Yesterday, 26th January 2026, Maya underwent an EMG (electromyography) — a test to assess how well her nerves and muscles are communicating.

The questions we are desperately hoping to get answers to are ones no parent should ever have to ask:

Why are Maya’s lower limbs still not responding?
Have her nerves been permanently damaged by the severe immune reactions following CAR-T cell therapy?

These questions sit heavy with us — because they shape what Maya’s future mobility, independence, and rehabilitation may look like.

An Unexpected Turn Today

Today, 27th January 2026, has been emotionally and physically exhausting.

Over the past 3-4 days, Maya has been complaining of back pain and hip pain 😢 — something she has rarely been able to articulate before. Because of this, her MRI scan was urgently brought forward from 11th February to today.

We are hoping — praying — that this pain is not something more sinister. Our hope is that it may be due to Maya becoming more aware of her body positioning, and because she cannot yet move independently, she feels the soreness more acutely.

Still, as parents, every new pain brings fresh fear.

Why This Is Happening: A Reminder

CAR-T cell therapy was meant to destroy Maya’s cancer.

Instead, her immune system reacted too powerfully, leading to rare but devastating complications:

CRS (Cytokine Release Syndrome): overwhelming whole-body inflammation
ICANS: inflammation of the brain, resulting in traumatic brain injury
HLH: an immune system that would not switch off, attacking her own body

These reactions changed everything — leaving Maya needing regular blood and platelet transfusions, intensive neuro-rehabilitation, and 24/7 care.

Yet she is still here. And she is still fighting.

Thank You for Carrying Us

To everyone who continues to donate — thank you, from the bottom of our hearts. 💕

Your kindness truly keeps us going.

Each donation, no matter the size:

Helps cover utility bills during loss of income
Pays for train fares so Terry can visit Maya 3–4 times a week
Supports the hands-on work Terry does with Maya — helping her build core strength, practice fine motor skills, and reminding her body what movement feels like

Your support is not abstract.

It shows up in our everyday survival.

To those that have asked:

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

Santander bank transfer

Mrs D C Nash

Sort code 09-01-36

Account 4957 9984

Reference: Maya’s Journey

Maya’s Strength- She has been through what would break most — yet she continues to rise bravely and relentlessly.

Maya’s strength is incredible.

It is found in endurance, in persistence, and in continuing — even when the path forward is uncertain.