Relentless Disease. Relentless Child.

dellanienash9
3 hours ago
5 min read

🩷 An Update on Maya 💜

Over the past few weeks, I’ve shared snippets here and there. But I wanted to sit down and give you a proper update on Maya — because when you’re living it day by day, it’s hard to see the full picture.

The Timeline

26th January – EMG (Electromyography)

Needles into muscles. Wires measuring what Maya’s body can no longer do.

27th January – MRI head and whole spine under GA

Watching Maya on her bed wheeled away, again, for another general anaesthetic — it never, ever gets easier.

6th February – Bone Marrow Aspirates and Trephine and Lumbar Puncture under GA

More samples. We now know on 13th Feb that lumbar puncture all okay, bone marrow aspirates were fine but trephine showed increase in inflammatory cytokines especially IL-6.

10th February – MIBG contrast dye injection

For 48 hours, our sassy Maya Moo was radioactive.

11th February – MIBG scan under GA

Another “donut” machine. Another test. Another breath held.

15th February- Abdominal Ultrasound Scan. “Jelly on the belly”

20th February - Hips/Pelvis X-ray

This warrior girl really is going through so much.

Sometimes I sit back and wonder how a 12-year old child can be dealt such relentlessly cruel cards even before she turned 4 years of age. And yet — despite the tears she sheds every single day — she still finds joy. The smallest things make her giggle. And when Maya laughs, it is infectious. It fills the hospital room. It reminds you that she is still here. Still fighting. Still cheeky Maya!

And when you look at everything she has endured — everything she is enduring — how do you say “no” to her? Every little request feels sacred.

Disease Reassessment

Over the past five weeks, she’s had full disease reassessment at GOSH — MRI, MIBG, ultrasound, X-ray, bone marrow biopsy and trephine, plus lumbar puncture.

Thankfully, overall her disease is currently stable. 🤞🤞🤞

In this world, “stable” is a word you cling to. It’s not remission. It’s not cured. But it’s not progression either. And right now, that matters.

Neurological Update

Neurologically, Maya has motor paralysis. Her sensation and proprioception are intact — she knows exactly where her legs are. She feels when her pad needs changing. She feels cold. She feels heat. She feels pain. She feels touch. But she has no active voluntary motor movement from the trunk down. There is no trunk control — she cannot sit upright by herself. Her neck control is just beginning to return. Her arms are slowly emerging. Her fingers are weak, their power fragile and faint. Her speech is somewhat difficult to understand.

And the question that hangs in the air:

Will she ever walk again?

Nobody can reassure us. Nobody can give us a timeline. Nobody can promise that she will.

We are working alongside the team on intensive rehabilitation planning.

What CAR T Cell Therapy Has Done

We asked for a miracle. But miracles sometimes come wrapped in trauma. The CAR T-cell infusion has caused significant neurological injury.

Her MRI brain showed inflammatory changes since November 2025— encephalitis — and the February 2026 MRI showed that encephalitis is still there but the inflammation is slowly improving. That word “slowly” feels heavy, but it matters. Any improvement matters.

However, there are now changes affecting her spinal pathways. These correlate with what we see every single day in front of us. Maya has lost her ability to move from the waist down. She cannot shuffle her bottom. And yet — her sensory system is completely intact. She feels everything. But she cannot move.

But Did CAR T Do Its Job?

That is the ultimate question.

If her brain has paid this price… has it been worth it? The MIBG scan has shown “minimal” MIBG uptake.

MIBG is a special contrast dye that mimics noradrenaline — something neuroblastoma cells naturally absorb because they develop from immature nerve cells. When injected, the dye is taken up by active neuroblastoma cells and “lights up” on the scan.

This time?

Less glow. Less intensity. Less activity. The surface area of tumour appears reduced in size and brightness. Not exactly a headline victory. But it is something. And right now, something is everything to us!

Living Between Hope and Heartbreak

This is the reality of relapsed/refractory high-risk neuroblastoma. This is the reality of CAR T therapy severe reactions. This is the reality of ICANS and cytokine storm aftermath.

You may win one battle and lose another.

You can reduce tumour burden and lose motor function.

You can watch your child glow on a scan for the wrong reasons.

And still — still — Maya laughs. Still she finds joy.

Still she fights in ways most adults never could.

Where We Are Now

Maya remains inpatient at GOSH due to ongoing immune suppression. Her bone marrow is struggling to recover.

She currently needs:

Platelet transfusions twice a week
Red cell transfusions roughly every three weeks (which is an improvement from every 1–2 weeks)

There are discussions about stem cell rescue, but Terry and I haven’t consented yet. We are worried about potential complications like ICANS and Cytokine Release Syndrome. These are not small decisions. They are terrifying, heavy ones.

We have requested a one-off home leave so we can have a “Merry Maya Christmas” dinner together. Transport had been tricky with day and night shift limitations, and it could only happen if she were clinically stable at the time — and we’ve done it!

Once medically stable, the plan is for her to transfer to:

The Children’s Trust

Funding is in place for up to 12 weeks of intensive neurorehabilitation. The earliest available space is end of April / around May. Our hope is that she will be stable by the end of April.

If she no longer requires Lion Ward for active oncology or immune treatment, she may be discharged home before that transfer.

Kent Community OT (Occupational Therapy) are starting home assessments on Tuesday 3rd March to organise:

A profiling bed
Hoist and moving/handling equipment
Her wheelchair (already requested through GOSH but via a separate charity organisation)

Currently she is receiving:

Physio 3–4 times a week (hour-long sessions)
OT three times a week
Play therapy and music therapy supporting fine motor rehab — Lego, slime, writing, painting, playing UNO cards, make-up, arts and crafts
FES and NMES machines (electrical stimulation gadgets)

Even rehabilitation looks like childhood, when you squint hard enough.

The Truth

It’s a lot. We are living between hope and heartbreak every single day. But we are taking it one step at a time. One scan at a time. One transfusion at a time. One giggle at a time.