Eve Wilson from Portsmouth is only 16, but already knows how devastating cancer can be.
Whether she is dancing in her passion dance classes, studying for her final exams or hanging out with friends, she lives with the constant fear that the brain tumor she was diagnosed with five years ago could grow again.
It started with fatigue, blurred vision and terrible headaches. And although doctors dismissed her problems as “just hormones” – shockingly, one even suggested she was making up her symptoms – her condition worsened and she lost her sight.
Eve Wilson lost her sight after a brain tumor
Tests revealed she had a craniopharyngioma, a rare tumor that grows at the base of the brain and can disrupt vision and the hormone system.
For Eve, surgery shortly after diagnosis to shrink the tumor was “like a miracle.”
She says, “When I woke up after the surgery, I could see again.”
Eve is just one of the brave children featured in a new documentary called Kids Like Us, streaming on Sky next week. Filmed in partnership with the charity Children With Cancer UK, it chronicles the moving, uplifting and often heartbreaking experiences of children with the disease and the toll it takes on them, their friends and their families – as well as the astonishing medical advances that are saving their lives.
The documentary comes at a crucial time. The number of children diagnosed with cancer has risen by more than 15 per cent since the 1990s, says the Royal College of Paediatrics and Child Health. Around 1,600 children under 15 are now diagnosed on the NHS each year.
The good news is that over that period, the number of children surviving cancer has increased as treatments have become more effective.
However, the exact cause of this increase remains a mystery.
For Eve, the tumor was in a “very dangerous place, right in the middle of my brain,” she says.
This meant that the tumour could not be completely removed and to reduce the risk of the tumour growing back, she underwent proton therapy, a targeted radiotherapy that uses powerful beams of energy to destroy the tumour with minimal damage to surrounding tissue.
However, she has been warned that the side effects – insomnia, fatigue and hormonal disturbances – can last for fifteen years.
And although her tumor is stable and under control, the fear remains.
She says, “It’s scary to have that little voice in the back of your head saying, ‘This isn’t over yet… It could come back.’ That’s what I live with. Even when I’m stable, it still affects me every day.”
The children featured in the program not only talk about the debilitating side effects of treatment, but also about the bullies at school who teased them when they went bald from chemotherapy, their fear of death and their hopes for the future.
They also poignantly explain that they hide their pain so as not to anger their parents.
They all show exceptional resilience and good humour – and that is even more true for seven-year-old Dulcie O’Kelly from Telford, Shropshire. In 2021, she was diagnosed with neuroblastoma, a cancer in which nerve cells grow out of control and clump together to form tumours.
Dulcie O’Kelly says she is determined to ‘beat cancer’
Despite surgeons removing a 1.2kg tumour – about the size of a pineapple – from her abdomen, the cancer spread to her bones.
After a successful course of immunotherapy drugs, which strengthened her immune system to the point where it could recognize and destroy the cancer cells, she now receives regular chemotherapy to kill any remaining cancer cells.
To check whether the treatment is working, she also needs regular scans. And while she hates the “big donut machine” – her name for the MRI scanner – Dulcie remains cheerfully determined, in her own words, “to kick cancer’s ass”.
At the same time, there has been an increase in the number of young adults diagnosed with cancer.
A large study last month found that people born in 1990 are three times more likely to develop certain forms of the disease than people over 70.
Other cancers are increasing among younger age groups, while rates have decreased among older people.
Some experts attribute this increase to the increased consumption of ultra-processed foods, but also to other factors such as the overuse of antibiotics, radiation from mobile phones and plastic particles in our drinking water.
Could these environmental changes also be the cause of the increase in childhood cancer?
Interestingly, other experts believe that another aspect of modern life may be to blame: that children’s immune systems don’t get the chance to develop properly because homes are super clean these days.
‘The explosion in cancers in the younger adult population is clearly related to environmental exposures, but childhood cancers are unlikely to be related to these factors,’ says Dr Sara Ghorashian, a consultant haematologist at Great Ormond Street Hospital. ‘However, it is possible that they are related to changes in the immune system. One theory is that because we are now very clean as a society, our immune systems are not trained from birth in the way they used to be.
“We’re delaying children’s exposure to infections until they’re in daycare or school, and then their immune systems suddenly kick in, causing problems. This may be why immune-related cancers like leukemia are most common in people between the ages of two and 10.”
However, other experts believe that more children are getting cancer because medical advances are causing fewer children to die.
‘Of course cancer is a terrible thing for any child and their family to go through, and it remains one of the biggest killers of children,’ says Alastair Sutcliffe, professor of general paediatrics at University College London. ‘But one reason for that is that thankfully there are many other conditions that don’t kill as many children these days, such as premature births and infectious diseases.
“And while cancer rates may be increasing, overall childhood mortality is decreasing. Childhood cancer is an area where great success has been achieved.”
However, campaigners argue that more needs to be done to develop new treatments. They argue that while childhood cancers are very different to adult cancers, children are often still treated with drugs specifically designed for adults. This can have significant long-term side effects.
Last week, Cancer Research UK and medical research organisation LifeArc launched a £28 million campaign to accelerate drug development. Dr David Jenkinson, head of children’s cancer at LifeArc, said: ‘Although survival rates for children with cancer have improved over the past few decades, children are often left with life-changing side effects from their treatment. There is an urgent need for safer, more effective solutions for children.’
The documentary also focuses on 11-year-old identical twins Alec and Aden Robinson from Fort Worth, Texas. Their extraordinary story is as moving as it is heartbreaking.
In 2019, Alec was diagnosed with acute lymphocytic leukaemia, which affects the blood and bone marrow. He said: ‘I had a cough – I could barely breathe. My mum rushed me to hospital and they found a huge mass in my chest – it was pressing on my windpipe, stopping me from breathing.
“They sent me for an x-ray and found out I had leukemia.”
Twins Alec and Aden Robinson, who were both diagnosed with leukemia
After surgery to remove the growth—a massively enlarged gland in his chest caused by the leukemia—Alec underwent chemotherapy. “The side effects weren’t fun,” he said, “but it worked.”
When doctors confirmed in 2022 that his condition was in remission, it was news the twins’ mother, Rhea (49), had been hoping for.
She said, “It was an amazing feeling. I didn’t worry anymore. I felt like God had created a miracle for us.”
But in a terrible twist, Alec’s brother was diagnosed with an even more aggressive form of the same disease a year later.
“Eleven months later, Aden was diagnosed with the same cancer that Alec had. I was devastated,” Rhea says. “My first words were, ‘God, I can’t do this again.'”
Experts believe that identical twins are more susceptible to the same diseases.
“Some forms of childhood leukemia develop during birth,” Dr. Ghorashian says.
‘Identical twins once shared the same blood circulation. This means that the same abnormal cells, which can become cancer cells, can occur in both children.’
Aden has T-cell leukemia. In this condition, special cells that normally help the body fight infections do not form properly. Instead, they grow and divide rapidly. They build up in the bone marrow and prevent the production of healthy blood cells.
This can lead to symptoms such as weakness, fatigue, bruising and susceptibility to infections.
Like many of the children in the documentary, Aden deals with serious side effects, such as diabetes and brain hemorrhages.
“When he’s in pain, he has extreme panic attacks that affect his entire body,” Rhea says. “Those are the times my heart breaks for him — no child should have to go through half of what he has to go through.”
Luckily, his twin brother is there to help. Alec, who is still cancer-free, said: ‘It’s crazy that we both had cancer – but the best thing about being twins is knowing that you have each other’s back.
‘Sometimes Aden is afraid that something bad will happen to him.
‘I help him by asking him to calm down and take deep breaths.
“He’s in pain. But I’ve been there – I can tell him what’s going to happen so he can prepare.”
For Aden, who still has two years of chemotherapy to go, his twin brother’s support clearly means a lot.
He said, ‘We fight and tease each other, but we never want to be apart.’
“My first thought when I got the diagnosis was, ‘It’s going to be OK.’ If I see Alec survive, I know I’m going to be OK.”
● Kids Like Us is available to watch on Sky’s streaming service from Thursday.