‘We want to do something to find better treatments and a cure, obviously, would be the magic thing from it’

JUST before he started going to school in 2021, Elliott Peto would wake up in the night, complaining of pain in his cheek.

His parents, Chris Peto and Aimée Day, took him to the GP. They were told that it was residual pain from a cold and to give the four-year-old paracetamol and ibuprofen.

After more sleepless nights they arranged an appointment with another GP, who gave the same diagnosis and advice.

But Elliott’s pain continued and his parents began to notice changes in his behaviour too.

He had always been a happy and outgoing boy but he was becoming quieter.

They took him to the dentist in the hope that they might uncover the source of the pain but nothing was observed.

In fact, a tumour was growing undetected in Elliott’s cheek.

Eventually, this would be diagnosed as Rhabdomyosarcoma, a rare and aggressive soft tissue cancer, which is found in fewer than 60 children in the UK each year.

It mostly occurs in children under 10 years old and the most common symptom is a lump or swelling.

Following his diagnosis, Elliott bravely underwent many rounds of treatment but died of the disease in December.

His parents are determined to raise awareness of Rhabdomyosarcoma and have launched a fundraising appeal in his memory for research into the disease and more treatments.

Mr Peto said: “If we look back at our journey, the things that frustrated us the most were the month it took before anyone realised what he’d got.

“We went through all the correct channels, repeatedly, trying to get people to tell us what it was and send us to the right people.

“But we kept getting sent home. Elliott was going through so much discomfort, all the nights when he was waking up and squealing he had pain in his cheek.

“And we were like, pat pat, go to sleep. We took him to the doctor, the dentist, all this stuff.”

Ms Day said: “We had all the medical experts around us, there was no concern. They said, ‘We can’t see anything. He seems fine’.

“He wasn’t always crying and in pain, it came and went, so they didn’t think it was anything serious. But I just had this nagging feeling he was not right. He was not the way he should be at night, he was not very happy and this was going on and on.”

Elliott was referred for a paediatric appointment in November but on September 30, Ms Day received a call from his teacher at Sacred Heart Primary School in Henley, who was concerned about his behaviour and mood.

The next day she kept Elliott off school and after a phone call with a GP, took him to accident and emergency at the Royal Berkshire Hospital in Reading.

Doctors suspected the cause of the pain was an infection in Elliott’s cheek and he was immediately put on antibiotics.

Mr Peto, who works as a gardener on estates in and around Henley, said that he felt some relief that the medical staff seemed to know what they were dealing with.

He recalled: “I told the guys at work, ‘I’ve got to get to the hospital — it’s Elliott, he has got an infection’ and they were all saying, well, at least you know what it is now.

“I was thinking, yes. And then: there’s a swelling. Or maybe it’s a cyst? Well if it’s a cyst they’ll get it cut out. God, he’s got to have an operation now but at least he’s in the right place.

“Four days after he’d been to the hospital, I was working, raking up some leaves, when I got the call from Aimée, saying Elliott had got a tumour in his cheek and it was extended into his skull.

“I was like, ‘What? I’m coming.’ I told them at work what it was and got in the car. I’ve not been back to work since.

“I remember getting home and calling my sister and breaking down because of the magnitude of what had happened hit me. I had to get it out of my system and be composed to go to be with Aimée and Elliott in hospital.”

The boy was transferred to paediatric cancer specialists at the John Radcliffe Hospital in Oxford for his treatment.

He had a biopsy while under general anaesthetic, which showed that he was suffering from a malignant, fast-growing tumour.

Mr Peto passed out when he and his partner were given the news.

Ms Day said: “When we had the diagnosis, that was so traumatising. It was a huge shock as it was the worst case scenario.

“Once they’d done the scan and realised it was a malignant mass everything happened very quickly. It was suddenly very serious and the prognosis was not good.

“We were told he probably wouldn’t grow up. That was very hard to hear.

“But we kept the hope that the treatment could work and that we would give everything to get him better.”

Mr Peto and Ms Day’s employers allowed them to take time off work so that they could care for Elliott full-time throughout his treatment, for which they say they are very grateful. 

The couple were reassured by the expertise of the team around their son on Kamran’s ward, the paediatric oncology ward at the John Radcliffe, and the speed at which they worked.

A multi-disciplinary group that included five consultants would meet every week to discuss Elliott’s case and make clinical decisions. Elliott began chemotherapy immediately. A scan on Christmas Eve showed that the tumour was responding well to the treatment.

The swelling in his cheek, which had suddenly become visible after the diagnosis, started to go down. Elliott was able to go home for Christmas.

But the treatment came with its own difficulties and the family had to contend with managing the symptoms of intensive chemotherapy on a four-year-old boy.

Mr Peto said: “Alongside the chemotherapy, and how awful that makes him feel, there were all the complications.

“You’re constantly having a lowered immune system, which hammers your bone marrow. You don’t have the ability to fight off colds. Elliott would frequently get a fever and have to go to the Royal Berks.

“The swelling made his eye stay open when he was asleep, so his eye dried out and he had a corneal scar. Then there was the fact he’d lost his appetite because he felt so rotten all the time.

“They tried to put feeding tubes down his nose. It was so traumatic, having three or four nurses having to hold him down to get this in because he couldn’t eat enough.

“And then every time he felt ill that would come out, so he’d have to have it put down again. And he could only have it on one side because of the swelling on the other.

“He lost so much weight. He was just over 17kg when he started the treatment and got down to about 14kg. At Christmas that year he looked like a little elf. He was so slim.”

To help Elliott maintain his weight and stop using the feeding tube, he had an operation to be fitted with a gastro peg so nutrients could be delivered directly into his stomach.

This also had complications as some movements meant that the peg was enveloped by his stomach because of the swelling.

Elliott needed another procedure to rectify this, which then enabled him to put weight back on.

The couple were not prepared for the fact that Elliott quickly became constipated as a result of the chemotherapy.

Mr Peto said: “He got compacted after the first round of chemo. He hadn’t been for a couple of days and we thought, ‘It’ll be all right, we’ll give him a sachet of this’, but no, it just stopped.

“Then he was sick and went to the hospital and they found he had a temperature so he was stuck in there, fed up, feeling rotten. It stopped him walking and he didn’t feel like getting out of bed, which made him even worse.

“It was a steep learning curve. Laxative, laxative, laxative, out in a field going for a walk — we’d still end up with him in hospital with a temperature but for less time. When he was there it wasn’t as awful.”

Ms Day said: “We hadn’t talked about poo so much since he was newborn. You talk about poo all the time as a new parent and then that calms down.”

Elliott underwent multiple rounds of chemotherapy between the October and March.

He spent a significant amount of time in hospital over that period, either having chemotherapy or being treated for fevers and becoming neutropenic due to his suppressed immune system.

As a result, Elliott could not attend school, which he loved.

With the ongoing support of teachers from Sacred Heart, Mr Peto started to homeschool his son so that he could keep up with his friends. 

In May, Elliott started a six-week course of radiotherapy at University College Hospital London, which meant that the family had to temporarily move out of their home in Reading.  

Mr Peto and Ms Day stayed in a building run by Young Lives vs Cancer, previously CLIC Sargent. They described it as a “home from home”, only a five-minute walk from the hospital where Elliott was having daily doses of radiotherapy.

Because of his age, he had to have a general anaesthetic for each dose, meaning he could have nothing to eat or drink before 11am each day.

With the physical hardships that Elliott went through, his parents were amazed by his fortitude and resilience.

Ms Day said: “There was a lot of stress and trauma and worry but he was just amazing through it all. Because he was so young he just accepted so many things that happened, bless him. He just sort of got on with it.”

She described Elliott’s personality as very outgoing: “He was not afraid to talk to anybody.”

Mr Peto said: “He was a terrible flirt. One time we were at UCLH and the consultant who was overseeing Elliott’s radiotherapy wanted to see me and Elliott.

“We were brought down to radiotherapy with a nurse, because that’s the protocol, and a specialist would get Elliott ready for his anaesthetic and his radiotherapy and then a nurse would bring him back afterwards.

“Somehow Elliott had managed to coerce two nurses to come with him that morning.

“The doctor wanted to talk to both of us and was saying, ‘You’re looking very well’ but Elliott said: ‘Daddy, are we done yet?’ and the doctor said: ‘That’s okay, I can talk to Daddy, you can go and play with the nurses’.

“So I speak with the doctor and when I finally go through Elliott has got the two nurses and two play specialists and they’re all around him like a little harem.

“I’m like, ‘Elliott, you have no shame, have you?’”  

 Elliott’s parents say they always tried to stay positive and to focus on the areas that they could control, despite the difficulties that they faced as a family.

Mr Peto said: “So many things were out of our hands. I like to be in control and I suddenly had to trust everyone else and listen but still be asking questions.”

“It was managing it all. We had to manage the medicine, the behaviour and the exercise.

“Elliott had to get enough exercise so he was not constipated or getting unfit but not too much so he was tired and then in pain.

“And every time things changed with his condition, everything would realign. It was a learning curve all the time.”

Ms Day said: “We were trying to be the best advocate for him, not to question the doctors but to try to understand and be happy with what was happening.”

The couple say they will always be grateful for the support of the wide range of hospital staff they met, from nurses and dietitians to the play teams and educational support they received on the hospital wards. 

Mr Peto said: “There was Caron at the JR, who was an amazing teacher, and Cheryl from the educational team on Lions ward at RBH who Elliott nicknamed ‘The Boss’.

“She said, ‘Good, because I’m not the headteacher here, so I’ll tell the headteacher you say I’m the boss.’ That was really nice.”

Ms Day said: “There were some lovely people throughout this.”

In particular, the couple want to thank their consultant Dr Amy Mitchell, who led Elliott’s treatment at the John Radcliffe.

Mr Peto said: “Even when Elliott was terminal she said. ‘You’ve still got options’. She would always present us with as many viable options as possible at each stage.

“It got really hard then and you’re always questioning, did we make the right decision?

“As parents, you make the impossible decision: do we stop the treatment, give him life experiences and ultimately he’s going to pass away from this?

“But that month is going to be filled with being out of hospital, being on lots of pain medication so he can still function and take in life not the pain. We chose that but it’s the hardest decision we’ll ever have to make because ultimately we’re saying we’re not going to treat his disease any more, we’re going to give him a month of fun.

“We could have persisted but it sounded like he’d potentially be in hospital for a month and then pass away.

“It was an impossible decision but we had to make it because we were his parents.

“We’re never not going to feel guilty about it. He got a disease, I don’t know why, but you’re responsible because he’s your child. That’s the responsibility you bear as a parent.”

Once their decision had been made, Ms Day’s cousin Katrina Minoletti began a fundraising appeal, with the couple’s permission, so that the family could do anything Elliott wanted without them having to worry about funds.

The appeal for his magical experiences was featured in the Henley Standard and helped to raise more than £13,000.

The couple say they want to thank everyone who contributed to the appeal.

The money enabled the family visit the BCA Zoo at Burchetts Green, Beale Park, Harry Potter World and the Living Rainforest in Hampstead Norreys as well as spending a day at the beach with Elliott’s cousins. Mr Peto said: “We wish we’d had more time to spend more money on him but we just didn’t.

“Some of the stuff he wanted to do didn’t cost anything. To take him to the beach it was just the petrol in the car — he just wanted to be there with his cousins.”

Elliott enjoyed his day at the beach but by that point, the tumour was pushing on to his temporal lobe and causing behavioural changes which were challenging to manage.

With the help of painkillers and with some ingenuity, in his last days Elliott was able to complete his major ambition: to carry out a “leap of faith” like his hero,
Spider-Man.

His parents were unsure how they would make this wish come true but it was solved by his reception teacher, Avery Penna.

She and Elliott had become close when she had supported his learning throughout the months that he had been unable to attend school, even bringing a camping chair to read to him from their driveway when he was isolating at home.

Miss Penna, a keen climber, took Elliott and his parents to Parthian Climbing in Reading. Together, they scaled a wall and Elliott was able to make a leap, safely supported by ropes and a harness. Two days later, on the morning of December 1, Elliott died at the Helen and Douglas House hospice in Oxford.

To mark what would have been his sixth birthday on January 31, Mr Peto and Ms Day replicated their son’s triumphant climb with Miss Penna. They then had a party for friends and family in the evening.

Ms Day says she is struggling now that Elliott is no longer with them.

She said: “It was very abrupt. Because he was our only child, there’s just nothing. You can’t carry on as a parent in any capacity. It’s very hard.”

Mr Peto said: “The nurses say, ‘You’ll always be parents’ but we’re not functioning as parents any more. That is why we’re doing this. Because we want to continue being his parents in the way we can, which is to honour his legacy and make sure he didn’t pass away in vain.”

The couple say that taking care of Elliott’s legacy, in the form of Elliott’s Arc, is their way of continuing to care for their son.

Ms Day said: “It massively is part of our coping mechanism. The silence is unbearable at home because it should be noisy with a little boy making lots of noise. So part of this is keeping busy and positive and keeping him alive and doing something good out of this awful thing.

“It is early days and we haven’t slowed down or stopped because I don’t want to at the moment. I don’t feel I’m ready to reintegrate into work and do all of that just yet, certainly not until I feel we’re getting something into place for Elliott and for the charity.

“It is definitely trying to do something to look after him in some way after losing him.

“It is putting off the inevitable that we need to accept his loss, which we can’t at the moment.”

Mr Peto finds comfort in listening to voice recordings that he made of Elliott playing in different parts of their house. The couple find the audio clips more powerful than videos as they capture Elliott chatting and playing naturally.

He said: “I did this thing while he was playing. We were aware he was terminal at the time. I used to put the recorder on while he played and then I can hear him.

“It’s desperate, isn’t it, but I want to remember as much as I can. You can’t put a person in a memory card.

“I listen to it in the places that I recorded it. It’s so quiet in his room now so when I play it in his room he’s still in the room.”

He plays a clip on his phone. Mr Peto: “Can you tell me the menu again please?”

Elliott: “Pesto pasta, pizza, cheese sandwiches and buttered toast.”

Mr Peto: “Can I have a pizza with the works?”

Elliott: “Yes, and you can have pesto pasta with it.”

Mr Peto said: “It’s a mission backing it all up. We’ve got it on memory cards and hard drives so we never lose it and we’ll get it into photo books so we’ve got all these pictures we can look at. Because all these pictures of him are wonderful.”

Setting up Elliott’s Arc is the first major step that the couple are taking in their life without their son.

They had not done much research  about charities that tackle Rhabdomyosarcoma while Elliott was being treated but quickly identified Alice’s Arc as the one that they wanted to support after his passing.

Ms Day said: “I didn’t want to look online about it because I thought it would be awful. I had heard of Alice’s Arc but I didn’t want to look at the time because I wanted to focus on Elliott and what needed to be done for him.

“It hasn’t really been until he passed away that we’ve looked at where you can get help and support for Rhabdomyosarcoma to further things.

“Because it’s such a rare cancer, government funding isn’t there for it. In fact, it is barely there for childhood cancer. They put it into what the most people will benefit from.

“So we want to try to do something to find better treatments and a cure, obviously, would be the magic thing from it.”

Alice’s Arc made headlines last month as it helped fund  a pilot which could enable the disease to be assessed through a blood test called a liquid biopsy. This would be a breakthrough in helping doctors monitor patients’ conditions and guide choices of treatments.  Mr Peto said: “There are lots of general children’s cancer charities but this is the cancer we’ve got a beef with — it’s personal.

“You embody it as an enemy and I feel a lot of hate and spite towards this thing that took my son.

“I want to do whatever I can. I want to get revenge on it and by finding a cure and finding treatments I feel that I’m doing that. That’s the way I’m channelling this.”

The couple are determined that their campaign to raise funds and awareness should be a positive one.

Mr Peto said: “I’m angry about the time it took for the diagnosis but I want to be supportive of GPs, not critical.

“What I want to happen is for people to know about this more.

“I want more funding and progress to be made with this condition and for that to channel through to frontline care, where the GPs are going to have more routine procedures to diagnose this. The frontline care affects the probability of getting benefits from the treatment available.

“And we want more tools in the toolbox for specialists. They’re excellent people — they care, they work really hard.”

Mr Peto said the couple’s overall mindset had shifted in the time since Elliott’s diagnosis.

He said: “The whole 14 months we were retrained to live for the day. Going forward, we intend to continue living for the day and making sure each day counts. Every day, the criteria of what I do is: is this worthy of Elliott? If not, it’s not worth my time.

“Our journey has a new chapter and that chapter is that we need to use Elliott’s legacy and honour it by doing the right things to help other people.

“I want to put it into perspective, if people hadn’t done it before Elliott got it, the drugs wouldn’t have been available to Elliott and we wouldn’t have had that 14 months with him.

“As difficult as they were, they were wonderful in their own right as well. Imagine if we’d lost him before he’d even turned five.

“I guess ultimately the longer you know someone the more you will miss them; there’s more to miss. But it’s better to have loved and lost than never to have loved at all. We loved Elliott. That’s the reason we miss him.”

Ms Day said: “He was happy little boy despite everything. He was happy, he wanted to have fun he was just a little kid really.

“In that spirit, despite the outcome, which of course for us is terrible, the things we want to do are positive in his memory.”