Maya still has neuroblastoma. She is not cancer-free.

dellanienash9
Mar 15
5 min read

A difficult but hopeful update on Maya 🎗️

The treatment that may be saving Maya’s life… is also the reason she is now disabled.

That is the reality we are living.

I know many people have been celebrating with us lately, and please believe me when I say — we are so deeply grateful for every prayer, every message, every donation, every share, and every single person who has stood beside our family.

But I need to gently clarify something:

Maya still has neuroblastoma.

She is not cancer-free.

What we do know right now is that her latest scan showed the MIBG uptake is now “minimal” — and that is huge.

It means the CAR T-cell therapy appears to be doing its job so far and is currently helping to tackle the neuroblastoma cells. That is the hope we are clinging to.

But the brutal truth is this:

The same treatment has also caused ICANS — a severe neurological complication that has left our beautiful girl disabled.

So while we are grateful…

We are also grieving. 🥲

Grieving the version of Maya who walked into this.

Grieving the life we had before this.

Grieving the parts of childhood cancer that people don’t always see.

Because sometimes the treatment that saves your child also changes them forever.

The literature says ICANS can be reversible, and that is the hope I am holding onto with everything I have.

Why the next 3 months are so critical

Right now, the priority is no longer just treatment.

It is urgent, early intensive neuro-rehabilitation.

Maya is due to go to The Children’s Trust, Tadworth at the beginning of May for a 3-month intensive neuro-rehabilitation placement.

This is absolutely vital.

Because while we are praying her brain networks are able to rewire and reconnect, her muscles, joints, ligaments and movement patterns need to be rebuilt, retrained and reminded what they are supposed to do — at the earliest possible stage.

This next chapter is not optional.

It is critical.

What this really means for our family

By the end of March, we will have already been at Great Ormond Street Hospital for 5 months.

Then Maya will be away again from May to July for neuro-rehabilitation.

That means our family is facing 8 months in total in hospital and rehabilitation settings away from home.

Eight months.

Eight months of trauma.

Eight months of survival mode.

Eight months of trying to keep our family afloat while watching our daughter endure the unimaginable.

Eight months of living in a world where nothing feels normal anymore.

This is exactly why I pushed so hard for Maya to be discharged home before Tadworth.

The original plan was to keep Maya in hospital until May and send her straight there — but I had to advocate hard, because the full reality of what this prolonged, unexpected hospital stay has done to our family has not truly been understood.

We need April at home.

Even if it’s only for a short while.

We need one precious month to breathe.

To regroup.

To be a family in our own home.

To hold ourselves together before the next stage begins.

Because if I don’t return to work, we are staring down a very real financial crisis. Homelessness.

That is the part nobody talks about enough.

Sometimes childhood cancer doesn’t just threaten your child’s life.

It threatens your home, your income, your mental health, your marriage, your family stability — everything.

Our new reality

Coming home does not mean life goes back to “normal”.

It means adapting to a completely different life.

My husband Terry is already making changes to our house because our lounge is now becoming Maya’s bedroom temporarily.

This is our reality now.

And although we are beyond grateful that Maya is still here with us — because that will always be the greatest gift — having a “disabled” child now brings an entirely new set of challenges that most people could never imagine until they are living it.

If the right NHS care package is not put in place, the truth is simple:

Terry and I will burn out by day two.

Caring for Maya is now 24/7.

This is NOT just “normal parenting but harder.”

This is specialist equipment.

Manual handling.

Hoists.

Beds.

Wheelchairs.

Night care.

Medication.

Rehabilitation.

Constant supervision.

Physical exhaustion.

Emotional exhaustion.

And trying to somehow still function as a family. And to still pay the mortgage and pay the bills.

Without proper support, it simply isn’t sustainable.

Perspective changes when your child has cancer

So yes… if your biggest problem today is:

the weather being too cold or too hot

someone cutting you up at the traffic lights

the supermarket queue being too long

your WiFi being slow

your takeaway arriving late

your coffee order being wrong

or not finding a parking space…

Please know this:

We would gladly swap with you. In a heartbeat.

Because those are normal life problems.

And normal life is something we miss more than words can ever explain.

But please don’t mistake our gratitude for the journey being over.

We are grateful beyond words that Maya is still here.

We are grateful the MIBG uptake is minimal.

We are grateful the CAR T appears to be doing something.

We are grateful for every single bit of hope.

But please hear this clearly:

We are not at the finish line.

We are nowhere near it.

Maya still has neuroblastoma.

Maya is now facing neurological recovery.

Maya still has another 3 months away from home from May to July for intensive rehab.

And our family is still fighting every single day just to hold everything together.

This journey is far from over.

Thank you — and a small ask

To every person who has never left our side:

Thank you.

Your kindness, your support, your messages, your prayers, your donations, your shares, your check-ins — none of it goes unnoticed.

You have carried us more than you will ever know.

As we now prepare for:

discharge home

house adaptations

essential equipment

an urgent NHS care package

and then 3 more months away from home for intensive neuro-rehabilitation

…if anyone is able to continue supporting Maya’s journey, whether by sharing this post, keeping her in your thoughts, or donating to help ease the enormous pressure on our family, it means more than words can say.

Because right now, we are not just fighting cancer.

We are fighting to keep our daughter safe.

We are fighting for her recovery.

We are fighting to keep our family functioning.

And quite honestly…

We are fighting to keep our home. 🏡

Childhood cancer sucks.

And childhood cancer with neurological injury is a cruelty I would not wish on anyone.

But Maya is still here.

And as long as she keeps fighting…

so will we. ❣️

To those who have asked: