A friendship of more than 20 years has seen Chris Doughty and Garry Newness, from Elmswell in Suffolk, go through some tough times together – having seen three diagnoses of childhood cancer in their families in just seven years.
Now keen to raise awareness of childhood cancer, Garry says the experiences of the past few years made them “part of a whole world you don’t want to be part of.”
The two friends met whilst working in the prison service, just over 20 years ago. Both still work within the prison service – Chris, 47, as Head of Safety, Diversity and Inclusion at Holsey Bay Prison, and Garry, 53, who works for the Hertfordshire, Essex and Suffolk regional team, looking at national implementation work.
Having initially met through Chris’ dad, the two became firm friends – and all their children (Chris’s children Tom, Lottie, Oli and youngest Louie and Garry’s children Seb and Arlea) have gone through the same local primary school. Both say they have known each other so long, they think of each other as family.
But it was back in 2017, that their worlds turned upside down when Garry’s daughter Arlea, now 20, was diagnosed with acute lymphoblastic leukaemia, aged 11.
Her symptoms started with tonsilitis and flu-like symptoms she couldn’t shake. Then a bruise, the size of an egg, appeared almost overnight from the groin down. She remembers being out with her dad that day and struggling to walk and her dad just thinking it was because she didn’t want to go anywhere and she says, looking back at old photos, her face was really gaunt at the time.
Her mum, Lisa, took her to the doctors the next day and she was admitted to West Suffolk Hospital. Tests revealed it was leukaemia and Arlea was then transferred to Addenbrooke’s.
Asked how she felt, receiving a diagnosis of cancer at just 11 years old, Arlea said her first worry was whether or not she would lose her hair but after that she ‘just got on with it.’
For dad Garry though, it was different. “A lot of people talk about the mood don’t they, when it takes you to the worst place. You come crashing down but then you start to come back up again and that’s absolutely true.”
“But I remember being incredibly distraught. I was trying to be a bit more stoic about it. Everything happens really quickly and the NHS mobilises around that sort of stuff so fast. You find yourself in a bit of a whirlwind really. And I remember being in Addenbrooke’s and Arlea, who was only 11, said to me, ‘Am I going to die, dad?’ and that’s the worst thing a parent could ever hear. It’s just horrendous.”
The family – Garry and his wife, Lisa, and their son Seb – were told Arlea’s cancer was curative, something they hung on to at the time. But telling everyone was still hard.
“After you get the diagnosis, you then have to start telling grandparents, best friends, all that kind of stuff and you find yourself in a really odd position because you’re ringing up people who are devasted to hear it, and then you’ve got me, and they kind of end up being worse than you are. So it’s a real juxtaposition of being the parent of a child who’s really, really poorly but then you’re trying to prop other people up as well.”
For Garry, his coping mechanism was trying to find out as much as he could about the type of leukaemia Arlea had. “For me, I needed to understand all about it, so I’ve become a bit of a pseudo haematologist on the quiet because if I know how it works, I know what the treatment looks like and I could understand the conversations that were being hand, which helped me process it better.”
Arlea had a Hickman line put in, a type of central venous catheter which is used for administering medications, fluids and blood products directly into the blood stream. Garry said he was trained in how to administer it all – how to change the valves, clean it all and link it all up and flush the lines.
However, having initially been told Arlea’s leukaemia was curative, the family were then told that further tests showed a rarer type of blood cancer known as Biphenotypic Acute Leukaemia which is more serious. Garry said: “We went from thinking her leukaemia was curative to thinking our daughter probably wouldn’t make it to Christmas.”
The rollercoaster continued and about a week later the family were told that a bacterial infection had caused the later diagnosis and that Arlea had acute lymphoblastic leukaemia as diagnosed previously.
Arlea underwent intense chemotherapy, daily to begin with and then twice a week which made her nauseous and weak and caused ulcers in her mouth. The bones in her knees started to dissolve, which meant she had to walk on crutches and use a wheelchair for about 18 months. She initially missed six months of school but after returning still had to take time off every time her temperature spiked because of the chemo, when she would have to be admitted to hospital.
Asked what got her through that time, she replies instantly: “Mum and dad”, adding: “There were a couple of friends but when you’re that age it’s hard for them to deal with it. I did lose quite a lot of friends at that age.”
Garry said he took the first six weeks off work and his wife, Lisa, took six months off to deal with all the care. Garry was offered counselling at the time but chose instead to rely on Chris.
The two friends would chat in the car on the drive into work each day, with Garry saying: “The hospital offered lots of support, but I was never a big fan of that. I wouldn’t want to sit in a room full of other people talking about it. My support was Chris. So if I felt low or despondent about something or just needed to chat to somebody outside of my immediate family stuff, Chris was my man.”
Chris said he had never heard of anyone having had cancer before their children got ill, other than Garry, who had previously been diagnosed with mouth cancer. Garry had also lost his stepdad to oesophageal cancer.
Seeing his close friend go through the journey gave him little insights into what that world was like, Chris said. “It was horrible because you think, I don’t have to have sick bowls in the house. You see snippets but you can’t relate to it and I think Garry will understand when I say this, but you feel lucky that it’s not you going through it and in some ways, you feel guilty because you know that it is really difficult.”
“All I could be was a mate and listen. At that point we were sharing lifts into work and because we saw each other every day I kind of knew how things were and how Arlea was feeling because you get that daily update.”
“Because I was seeing him every day, I realised that sometimes the talk doesn’t need to be about that. Sometimes it was about escapism for him.”
One year later, however, Chris’s son Oli, who was ten at the time, started getting strange symptoms. Colds he couldn’t fight off – and another day where he couldn’t catch his breath. Several weeks of tests continued until he was given a bone marrow biopsy – with the results revealing that he had the same type of leukaemia that Arlea had.
“Everything went into that 100 miles an hour wraparound care where you are placed into a room, you start the treatments. The line went in the next day.”
Having been the support for Garry, Chris now relied on Garry to reassure him about what was happening with Oli, as well as his wife, Claire, who is a nurse. He said his way of handling things was very different to Garry’s. He didn’t need to research everything he just needed reassurance.
Oli was part of an American trial where they spaced treatment out on a different plan to the one Arlea was on.
“Having a diagnosis of cancer just turns your life upside down,” Chris said. “You’ve got no choice – you just have to deal with it.”
Chris’ wife fell pregnant with their youngest, Louie, whilst Oli was still undergoing treatment. Their worst nightmare happened when Louie was born – with Oli in hospital at the same time as Louie after he was kept in for a few days following his birth. Despite this though, Chris describes Louie as ‘the best distraction’ during a difficult time.
Keen to raise awareness about childhood cancer, both families say they know a few other children in the village who have, or have had, cancer. With about nine cases in total, they asked for it to be investigated but said: “They explained that cancer is like throwing a handful of rice up in the air, that it can land in clusters.”
All three say that until they went through their experiences, they hadn’t realised that childhood cancer was as prevalent as it is.
“There’s a lot of it and until you become exposed to it you don’t see it,” Gary said. “But when both kids were admitted into C2, the kids’ cancer ward at Addenbrooke’s, you are slung into it. You see your own child being incredible and then you see an 18-month-old shooting down the corridor on his balance bike with a food tube and all their hair missing, it’s a whole world you don’t want to be exposed to. I think when you see adults having it, that’s one thing but when you see kids going through it, it makes you question everything about what’s fair.”
As for Arlea, she says: “Until you go through it yourself, you don’t really think kids go through it. But they do – and every time you go, there’s new faces.”
Arlea was given the all-clear and her treatment finished in 2019. Oli followed a year later in 2020. But in 2024, Arlea received the devasting news she had relapsed.
Now older and more aware of what the treatment was like, Arlea said it hit her hard. “I went through a bit of a dark patch in the beginning and I was refusing treatment. I remembered what it was like so I said, ‘I’m not doing that again’ But dad ended up bribing me with a car!”
Just like the first time, her symptoms began with tonsilitis. A course of antibiotics failed to get rid of it and Arlea said after finishing the course her ears were hurting and her throat was so sore she couldn’t eat or drink. She was told she had neutropenic sepsis so was given some intravenous antibiotics which got rid of her symptoms but then a big lump appeared on the side of her neck, with blood tests revealing that her leukaemia had returned.
Although it was hard for Arlea, Garry said he saw huge advancements in the type of cancer treatments available to young cancer patients like his daughter from when she was first diagnosed aged 11 to five years later.
Arlea had chemotherapy but was unable to have any immunotherapy as the chemo had not killed enough of her cancer cells for it to happen. She was then offered Car-T therapy, a type of cell-based gene therapy that modifies a patient’s T cells to enhance their ability to attack cancer cells. They are collected from the patient’s blood, altering them in a laboratory to better recognise and destroy cancer cells, and then infusing them back into the patient. This particular treatment cost half a million pounds – one of the reasons that both Garry and Chris want to give back to the hospital that helped save their children’s lives.
In December of that year, on Friday 13th, just six months after being diagnosed, Arlea was told that the Car-T therapy had got rid of her cancer. But on the Monday she was told her bone marrow was producing B cells again – so she underwent a Bone Marrow Transplant, using cells from a 21-year-old female donor from Germany. This was where the genetic sequencing offered to her the second time around really played a part in her recovery – allowing for a perfect match to be found.
In order to prevent her body from rejecting the cells, she had full body radiotherapy and chemotherapy to prevent graft versus host disease and Arlea describes this as particularly harsh – with ulcers in her mouth, throat and stomach, which made it hard for her to eat so she had to be fed intravenously through a tube.
Chris had already signed up to run the half marathon in 2025. Garry decided to join him but ended up running it during Arlea’s last phase of treatment, so went straight from the finishing line to visiting her in hospital.
Arlea has since been told she is cancer free.
Both Garry and Chris talk about how lucky they are to have Addenbrooke’s nearby and are keen to give back as a way of thanking hospital staff for the amazing care they received. The first time around, Arlea was treated in the same cancer ward as chef Jean-Cristophe Novelli’s son, who was being treated for brain cancer. Garry said to him it highlighted the fact that if someone famous came to Addenbrooke’s it spoke volumes about the level of care patients receive at the hospital.
Chris – who is running by himself this year – said: “When you’re talking about the amount of treatment, it’s phenomenal. Half a million for Car-T therapy and tablets costing £5,000, so it feels like a drop in the ocean, but it is just good to do something.”
And for Garry, having seen the huge advancements in cancer treatments in the few years between Arlea’s two diagnoses, he can see how vital the new cancer hospital will be with its specialist equipment and staff, innovative new treatments and purpose-built spaces.
“People talk about postcodes and being lucky and that’s the one thing about here. I think we’re lucky to be living where we are – that we’ve got Addenbrooke’s, so anything we can do is good. Whether it’s buying a bit of kit, anything really to try and ease that pressure to make that ambition become a reality then we’ve got to give it a go and try and do what we can.”
To donate to Chris’s fundraising click here.
Return to stories