Look At Your Child

Oct 5

6 min read

The Things We Worry About Now

Maya’s Journey — October 2026

The last time I wrote on here was 29th August 2026, in a blog called “It Had Never Reached Her Liver Before.

At that point, we were trying to process the fact that Maya’s neuroblastoma had now reached her liver. Since then, so much has happened that it is difficult to know where to begin. And honestly, I don’t think any parent should ever have to write an update like this about their child.

We had to stop neuro-rehabilitation

Maya had been at The Children’s Trust in Tadworth, working incredibly hard with her neurorehabilitation. After everything her body and brain had been through following CAR-T therapy and the catastrophic complications that followed, this placement was about trying to give Maya back some of the things cancer and treatment had taken from her. Standing. Moving. Strengthening. Learning what her body could do again. But as her cancer progressed and she developed increasing pain, particularly around her left side and back, we had to stop her rehabilitation placement. Cancer had once again taken priority. And we were back to concentrating on keeping Maya comfortable and trying to control a disease that simply refuses to give her a break.

Then came oral etoposide.

The plan was to try oral etoposide chemotherapy. A 21-day cycle. The hope was that it might slow the cancer down without putting Maya through another incredibly intensive treatment. But even that didn’t go according to plan. Maya started her first cycle, but by Day 12, her blood counts had dropped so dramatically that the etoposide had to be stopped. Her bone marrow was struggling. We had to wait. We had to watch her bloods. We had to transfuse her when necessary. And we had to hope her body would recover enough for us to try again. Eventually, Royal Marsden Hospital decided that if we were going to continue with etoposide, the dose needed to be reduced by 30%. So we did. Maya completed the reduced first cycle, taking her final dose on 29th September (or was it the 30th?). The plan was then to give her a seven-day break to allow her bone marrow to recover before starting Cycle 2 on Wednesday 7th October. We were counting down to it. But that isn’t going to happen now.

Saturday 3rd October

Instead, on Saturday, Maya was admitted to our local hospital, William Harvey Hospital.

She had developed a very high temperature — 39.6°C. Her inflammatory markers were rising rapidly. Her CRP, which had started at 61 (3rd October) went over 125 (4th October) and then climbed into the 283 (2:00am of 5th October). It is now even higher at 333 (3pm of 5th October):

She has needed IV antibiotics within half hour (IV Tazocin and IV Gentamicin, now they have added IV Teicoplanin, and the doctors have been investigating what is happening. CT scan (abdomen and chest) have been carried out, and images have been sent to The Royal Marsden Hospital. There is concern about infection, including something affecting her lung. The CT scan confirmed once again lesions on her liver (neuroblastoma cells infiltration). And then there is the added complication of her central line/port.

We are now facing conversations that no parent wants to have.

Does the port stay in?

It has a line infection — so does it have to come out?

If it has to come out, that potentially means a general anaesthetic to remove it.

And then what?

A new line?

A PICC line?

What happens when the cannula we’ve been relying on eventually stops working?

At the same time, we have to think about cancer treatment.

Can we restart chemotherapy?

When?

Which treatment is going to be least harsh on Maya while still giving us some hope of keeping those cancer cells at bay?

And what can her body actually tolerate anymore?

These are the decisions sitting on our shoulders right now.

Not what we’re having for dinner. Not whether Maya will get her homework done. Not whether she will tidy her bedroom.

Life has become blood counts, infection markers, antibiotics, transfusions, cannulas, ports, scans and chemotherapy.

And underneath all of it is the constant fear of what comes next.

And then there is our home

While all of this is happening, we are also desperately trying to keep our family home.

Maya loves her home. It where she is happiest. It is where she feels safe. It is where her things are.

Her memories. Her music. Her familiar surroundings. And, of course, her fur babies. Honey, her beautiful red Fox Labrador.

And her cats Timmy, Mochi, Boba and Wasabi.

Taking Maya away from the home she loves is not something we want to contemplate.

But keeping a roof over our heads has become a genuine worry. Our mortgage is currently £1,481 a month. From 1st November 2026, it will increase to £1,700.23 a month. And if Maya deteriorates further, there is a very real possibility that I may have to take more time away from work to care for her. I am the main earner in our family. My husband Terry has already had to give up his income to be Maya’s full-time carer. If I have to stop working, living on £124 a week in Statutory Sick Pay (SSP) simply isn’t going to cover a mortgage, household bills, food and everything else our family needs. Renting isn’t an easy answer either. No landlord would allow home adaptations for Maya’s disabilities. We would still have to find the money to pay rent, while trying to find somewhere suitable for Maya and her animals. And the thought of losing the home where Maya is happiest is heartbreaking. So when we ask people to support our fundraising, this isn’t about creating some luxurious life for our family.

It is about keeping a roof over Maya’s head.

It is about keeping her warm. Keeping her comfortable. Keeping her surrounded by the things and animals she loves. And giving us the chance to spend whatever time we have with her in the place she calls home.

“Please look at your child.”

I want to ask you to do something.

Right now, wherever your child is, look at their face. Really look at them. Maybe their face is covered in toothpaste because they refused to let you brush it properly. Maybe they are annoying you because they won’t put their shoes on and you’re already late for school. Maybe they’re refusing to do their homework because they’d rather be on their phone. Maybe they’re being sassy. Demanding. Argumentative. Maybe you’re counting down the minutes until bedtime because they’ve pushed every last button you have today. And I completely understand. Because that’s normal parenting. But I can promise you this:

There are oncology parents who would give absolutely anything to have those problems.

We don’t worry about whether Maya will refuse to put her shoes on. We worry about whether she will ever walk again.

We don’t argue about whether she has done her homework. We worry about whether her blood counts are high enough for her body to fight an infection.

We don’t worry about whether she is being difficult at bedtime. We worry about whether a temperature means a potentially life-threatening infection.

We don’t worry about which treatment she would prefer. We worry about which treatment is least cruel to her body while still having a chance of slowing her cancer.

We don’t decide whether to keep a port because Maya doesn’t like having it. We decide whether it can safely remain when it has become infected — and whether removing it means another anaesthetic, another procedure and another line.

This has been our normal now. For the last (nearly) ten years.

And if you’re lucky enough that your biggest problem today is your child refusing to put their shoes or coat on, please don’t feel guilty for finding it frustrating. Just hug them a little tighter.

Because somewhere, another parent is sitting beside a hospital bed wishing with every fibre of their being that their biggest problem was exactly that.

We are not asking people to feel sorry for us. We are asking people to understand. To imagine, just for a moment, that this was your child. That this was your home. That these were your bills.

That these were your decisions. What would you do to keep your child safe, comfortable and at home?

We are doing everything we possibly can. We just need a little help doing it.

If you can donate, thank you.

If you can’t, please share Maya’s story.

Because the person who could make a difference to our family might be one share away.

And right now, every share, every donation and every person who helps us keep our roof over our heads means more than we could ever put into words.

Please help us keep Maya home.

Help us keep her comfortable.

Help us protect the place where she is happiest.

And above all, please keep Team Maya in your hearts. 💗

“Empathy is looking at someone else’s life and imagining what it would feel like if it were yours.”

“You never know what battle someone is fighting behind the face you see.”