The Mysterious Lesion

It’s all happening!

Thursday 16th April 2026- Today was one of those days where everything feels like it’s moving at full speed, and yet somehow you’re just trying to keep up, one step at a time.

Maya, Daddy and Nanny Dora arrived at GOSH midday as planned. Maya had her port accessed again — the usual bloods, research bloods, and CAR T-cell bloods. It’s become part of our “normal,” if you can even call it that. She takes it all in her stride in a way that still amazes me.

Then came the ultrasound of her spine… which turned into a bit of a mystery. The radiographer couldn’t find the lesion they were looking for. You could see the confusion — screens being studied, angles being adjusted — until eventually a consultant was called in to help locate it. Moments like that are unsettling, if I’m honest. Daddy and Nanny sit there, watching professionals puzzle over Maya, trying not to let their minds run too far ahead.

After that, Maya had her MIBG contrast injection. So yes — she is officially radioactive for the next 48 hours. Something about that feels surreal to even write. Our little girl, glowing in more ways than one!

Maya was given a cubicle on Lion Ward so they have a safe and private space to change her pads before and after everything. There was the option for Maya and Daddy to stay overnight, but Maya just wanted to come home. Home is her safe place. So they came back, port still accessed, ready for tomorrow’s anaesthetic.

And tomorrow is another big one.

Friday 17th April — 8am at Lion Ward.

Maya will have her MIBG scan — the one where only neuroblastoma cells take up the MIBG tracer. It’s a scan that tells a story we both want and don’t want to hear at the same time.

She’ll also have a bone marrow biopsy and trephine. All under GA.

And on top of that, whilst Maya is under general anaesthetics (GA), the ophthalmology consultant will review her right eye, which has been so uncomfortable. Her swollen cheek is pushing the right lower eyelid upwards, causing her eyelashes to turn inward and rub against the sclera (white of her eye). It’s painful, irritating, and just one more thing she shouldn’t have to deal with — but here we are.

And just as all of this unfolds, life continues to throw in more decisions, more uncertainty, more “what next?”

I had a phone call from The Children’s Trust in Tadworth today. They’ve confirmed that Maya now has a space for intensive neuro-rehabilitation, with admission planned for Thursday 30th April.

On paper, this is exactly what Maya needs.

In reality… everything feels up in the air.

Because after this week’s investigations, we simply don’t know what comes next. If Maya needs further cancer treatment, it will inevitably disrupt — or even delay — her neuro-rehabilitation. So we’re caught in this strange in-between, trying to plan ahead while knowing everything could change overnight.

At the moment, Maya’s current therapy through the Kent community team is just one hour of physiotherapy and one hour of occupational therapy per week. They are a genuinely lovely team, and we are grateful — but the truth is, it doesn’t even begin to meet Maya’s rehabilitation needs.

There are gaps. BIG ones.

On the care side, there has at least been some progress. The Social Worker for Disabled Children has stepped things up, and we now have provision for one carer during the week (Monday to Friday) for three hours a day (7:30-10:30AM), and two carers on weekends for six hours — which we’ve split into three hours on Saturday (12:00-15:00) and three on Sunday (12:00-15:00). It helps a bit but Maya is still getting to know them all (different carers throughout the week).

So it’s still not enough to bridge everything.

As for the All Age Continuing Healthcare (care package)… we might as well forget it for now. We’ve been told they won’t even carry out an assessment until Maya is back from her 12-week neuro-rehab placement Tadworth. So effectively, we are left without that level of support at the exact time we need it most.

It’s hard not to feel frustrated. Systems that are meant to support families like ours feel slow, distant, and uninterested.

And yet, in the middle of all of this — the medical procedures, the uncertainty, the gaps in support — something incredibly beautiful has been happening too.

Over the past couple of days, we’ve had deliveries of nappies and syringes arriving at the door. Small packages, big love. The response from Maya’s followers has honestly overwhelmed us. Every parcel is a reminder that we are not doing this alone.

We also heard back from Motability — Maya’s application for a wheelchair accessible vehicle is currently under review. It may still take about 4 weeks! Right now, getting to and from appointments is costing us a small fortune in WAV taxi fares between Hythe and Ashford. We’ve looked at all options — GOSH transport is available, but a two-hour journey (Hythe-London) is just too much for Maya. The 38-minute fast train from Ashford to St Pancras, combined with a WAV taxi, is far kinder on her back, hip and legs.

If anyone feels able to help support these additional travel costs, whether via PayPal (dellanie_nash@yahoo.co.uk) or bank transfer, we would be incredibly grateful. Truly.

Santander

D C Nash

Sort code 09-01-36

Account number 49579984

Reference: Maya’s Journey

Because right now, it really does feel like everything is happening at once — the scans, the procedures, the logistics, the emotions — all layered on top of each other.

But through it all, there is something holding us steady.

They say it takes a village to raise a child… and right now, we are seeing that truth in the most profound way. If there is anything good that can come from such a painful journey, it is this: the kindness, generosity, and love from people — near and far — who have come together to hold Maya up when she needs it most.

So to all of you who have helped and still helping us, THANK YOU all so much! May you all be blessed more…