It Had Never Reached Her Liver Before.

Aug 29

4 min read

On Friday 22nd August, Maya had the whole-body MIBG scan. In medical language, the report was complicated. In simple terms, it told us something devastating:

Maya’s neuroblastoma is active again and has progressed.

The tumour we already knew about near the lower left side of her chest and ribs has grown significantly and become much more active. But it isn’t just there. The cancer has also shown itself in several of Maya’s bones — including her skull, shoulder, right upper arm, pelvis and thigh bones.

Suddenly, so much made sense. No wonder our girl has been in so much pain.

Thursday 27th August. Maya underwent an MRI of her head and her entire spine. Straight after the MRI procedure, she began another chapter of treatment: oral chemotherapy, Etoposide.

For now, her treatment plan is:

Monday to Thursday: 50mg daily

Friday to Sunday: 100mg daily

She takes Ondansetron 30 minutes beforehand to help prevent sickness, and it can also be given every 12 hours if she feels nauseous. Maya has been consented for 12 cycles. The plan is three weeks of oral chemotherapy, followed by one week of rest — depending on how her blood counts cope. And that is something we have to watch incredibly carefully. Maya’s body has already been through so much. The devastating complications following CAR-T treatment caused catastrophic damage, and we simply don’t know yet how well her body will tolerate Etoposide.

So, once again, we take things one day at a time.

One blood test. One dose. One decision. One step.

27th August. Thursday evening: The Royal Marsden MDT meeting.

Then came Friday 28th August.

Ironically, I had just finished having dental fillings when my phone rang. The consultant was calling. I walked outside the dentist feeling like a complete bag of nerves inside, whilst somehow trying to keep myself composed on the outside.

And then I heard more. The MRI confirmed that there is definitely an enlarged soft-tissue tumour involving Maya’s upper thoracic spine. Last year, before CAR-T, Maya had a lesion around T9–T10. She later had radiotherapy to T8–T10 in May 2026. This time, the MIBG scan suggested something much higher up the spine — between approximately T1 and T6.

The MRI confirmed involvement in the upper part of her thoracic spine. The small piece of relief is that it is not currently pressing on her spinal nerves. Not yet. Because of that, radiotherapy is being held off for now. The MRI of Maya’s head thankfully showed no cancer inside her brain. But it did confirm a tumour in the bone of her skull, on the right side towards the top of her head. And then came the news that completely sank our hearts.

The neuroblastoma has now spread to Maya’s liver.

Maya has never had liver involvement before.

It is truly soul-crushing news. The hope now is that Etoposide can control the cancer and stop it from continuing to grow. That is what we are hoping for. That is what we are fighting for.

The truth is, late August has felt like one long period of waiting. Waiting for scans. Waiting for results. Waiting for phone calls. Waiting to find out what happens next. And then comes the need for clarity. For decisions. For another plan. As usual, the only way we know how to survive this is to keep bringing ourselves back to the NEXT STEP only. Because sometimes looking too far ahead is simply too frightening.

And while all of this is happening, there is another reality quietly hanging over our family.

We are struggling to keep up with the financial pressure. Our mortgage is due to rise to around £1,700 per month from 1st November, and we are increasingly facing the possibility that we may have to sell our home and rent again. At the moment, everything is theoretical. But practically?

Who wants to come and view a house when a severely disabled, cancer-stricken child is living in the lounge, receiving cancer treatment and sometimes sick from chemotherapy? It is another impossible situation sitting quietly alongside everything else. We don’t know yet what will happen. Whether we will lose our home. Whether selling would actually leave us better or worse off. Whether someone, somewhere, might be able to help us find a way through this crisis.

But we do know one thing. Whatever happens, we will keep making Maya happy. We will keep her comfortable. We will keep giving her choices where life has taken so many choices away. Because Maya is not just a diagnosis. She is not just a scan. She is not just a “brave cancer patient”. She is a little girl with wishes. With opinions. With taste. With humour. With imagination. With songs she wants to sing. And that matters. It matters more than I can ever explain.

Maya’s joy still shines, no matter what is happening inside her body.

Her extraordinary resilience continues to shine around her, and I know that is why so many people have come to love her.

But beneath the wheelchair, the medical equipment, the medication, the scans and all the frightening medical language… there is still Maya. A girl with her own beautiful inner world. A girl who deserves beauty. A girl who deserves choices. A girl who deserves to be seen as Maya — not only as a patient.

Whether we become homeless or not, whether this next treatment works or whether another crisis waits around the corner, we will keep fighting to make sure her life is filled with as much happiness, comfort, love and beauty as possible. And somehow, after everything she has endured…

she is still trying to sing.

So please, if Maya’s story touches your heart, please don’t just scroll past. Please donate whatever you can — even £1 — and please share her story. Because somewhere out there may be the one person, organisation or opportunity that can help us see Maya and our family through this crisis.

She Is Still Singing. We Are Still Fighting.

Thank you all for taking the time to read this.

To those that have asked, either PayPal as a gift to

dellanie_nash@yahoo.co.uk

Reference: Maya’s Journey

Or Bank transfer to Santander

D C Nash

Sort code 09-01-36

Account 49579984

Reference: Maya’s Journey

I was told Santander sometimes decline transfer so:

Bank transfer to Lloyds Bank: