Eve Wilson from Portsmouth is just 16, but she already knows the terrible burden of cancer.
At every turn – in dance classes, which are her passion, while studying for her GCSEs, when out with friends – she lives with the constant worry that the brain tumour she was diagnosed with five years ago could start to grow again.
She began with fatigue, blurred vision and excruciating headaches. And although doctors dismissed her problems as “just hormones” (amazingly, one even suggested she was making up her symptoms), her condition worsened and she lost her sight.
Eve Wilson lost her sight after suffering from a brain tumor
Tests revealed she had a craniopharyngioma, a rare tumor that grows at the base of the brain and can interfere with vision and the hormonal system.
For Eve, an operation performed shortly after diagnosis to reduce the growth was “like a miracle.”
She says: “When I woke up after surgery, I could see again.”
Eve is just one of the brave children featured in a new documentary called Kids Like Us, which will air on Sky next week. Filmed in collaboration with the charity Children With Cancer UK, the documentary tells the moving, heart-warming and often heartbreaking experiences of children with the disease and the toll it takes on them, their friends and families, as well as the amazing 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, according to the Royal College of Paediatrics and Child Health. Currently, around 1,600 children under 15 are diagnosed each year on the NHS.
The good news is that over this period, the number of children surviving cancer has improved as treatments have become more efficient.
However, the exact cause of this increase remains a mystery.
For Eve, her tumor was in a “really dangerous place, right in the middle of my brain,” she says.
This meant it could not be completely removed and to reduce the risks of it growing back, she underwent proton therapy – targeted radiotherapy which uses high-powered energy beams to destroy the tumour with minimal damage to neighbouring tissue.
However, she has been warned that the side effects (insomnia, fatigue and hormonal changes) can last for 15 years.
And although her tumor is stable and under control, the fear persists.
She says: “It’s scary to have a voice in the back of your mind that says, ‘This isn’t over… It could come back.’ It’s what I’m living with. Even if I’m stable, it still affects me every day.”
As well as revealing the gruelling side effects of treatment, the children featured in the programme speak openly about the school bullies who taunted them when chemotherapy left them bald, their fears of dying and their hopes for the future.
Poignantly, they also talk about hiding their pain to ensure they do not upset their parents.
They all display exceptional resilience and good humour, and none more so than Dulcie O’Kelly, a seven-year-old girl from Telford, Shropshire, who in 2021 was diagnosed with neuroblastoma, a form of cancer in which nerve cells grow out of control and clump together to form tumours.
Dulcie O’Kelly says she is determined to ‘kick cancer’s ass’
Although surgeons removed a 2.5-pound (1.2-kg) tumor – about the size of a pineapple – from her abdomen, the cancer spread to her bones.
After successful treatment with immunotherapy drugs, which boosted her immune system so it could recognise and destroy cancer cells, she is now receiving regular chemotherapy to kill off any remaining cancer cells.
To check that the treatment is working, she also needs frequent scans. And although she hates the “big doughnut machine” (her name for the MRI scanner), Dulcie remains determined, in her own words, to “give cancer a beating.”
There has also been a parallel increase in the number of young adults diagnosed with cancer.
Last month, a major study found that people born in 1990 are three times more likely to develop certain forms of the disease than those over 70.
And other types are increasing in younger age groups, while rates have declined among older people.
Some experts attribute this increase to the increased consumption of ultra-processed foods, as well as other factors such as the excessive use of antibiotics, radiation from mobile phones and plastic particles in drinking water.
Could these environmental changes also be responsible for the increase in childhood cancer cases?
Interestingly, other experts believe that another aspect of modern life may be to blame: that children’s immune systems don’t get a chance to develop properly because homes are now super-clean.
“The explosion of cancer in the young adult population is clearly linked to environmental exposures, but childhood cancers are not likely to be linked to these factors,” says Dr Sara Ghorashian, consultant haematologist at Great Ormond Street Hospital. “However, it is possible that they are linked to changes in the immune system. One theory is that as a modern society, our immune system is not educated from birth as it once was.
“We are delaying children’s exposure to infections until they go to daycare or school, and then their immune system suddenly kicks in, causing problems. This may be why immune-related cancers, such as leukemia, are more common in children aged between two and ten.”
However, other experts believe that more children are getting cancer because medical advances mean fewer are dying from it.
“Of course, cancer is a terrible experience for any child and their family, and it remains one of the leading causes of childhood death,” said Alastair Sutcliffe, professor of general paediatrics at University College London. “But one of the reasons for this is that, thankfully, there are many other diseases that no longer kill as many children these days, such as premature birth and infectious diseases.
‘And while the number of cancer cases may be increasing, overall childhood mortality is decreasing, and childhood cancer is one area where tremendous gains have been made.’
But campaigners believe more needs to be done to develop new treatments, arguing that while childhood cancers differ significantly from adult cancers, children are still often treated with drugs developed for adults, which can cause significant long-term side effects.
Last week, Cancer Research UK and medical research charity LifeArc launched a £28m campaign to speed up drug development. Dr David Jenkinson, director of childhood cancer at LifeArc, said: “Although survival rates for children with cancer have improved in recent decades, children often suffer life-changing side effects from treatment. There is an urgent need for safer and more effective solutions for children.”
The documentary also features 11-year-old identical twins Alec and Aden Robinson from Fort Worth, Texas, whose extraordinary story is both heartwarming and heartbreaking.
In 2019, Alec was diagnosed with acute lymphoblastic leukaemia, which affected 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 growing in my chest – it was pressing on my windpipe so I couldn’t breathe.
“They sent me for an X-ray and discovered I had leukemia.”
Twins Alec and Aden Robinson, who developed leukemia
After the operation to remove the tumor (a very enlarged gland in the breast caused by leukemia), Alec underwent chemotherapy. “The side effects weren’t pleasant,” he said, “but it worked.”
In 2022, when doctors confirmed he was in remission, it was news the twins’ mother, Rhea, 49, had prayed for.
She said: “It was an amazing feeling. I wasn’t worried anymore. I felt like God had created a miracle for us.”
But in a shocking twist, a year later, Alec’s brother was diagnosed with an even more aggressive form of the same disease.
“Eleven months later, Aden was diagnosed with the same cancer as Alec. I was devastated,” Rhea says. “My first words were, ‘God, I can’t do this again. ’”
Experts believe that identical twins may be prone to the same diseases.
“Some childhood leukemias develop at birth,” says Dr. Ghorashian.
‘Identical twins have shared a blood system at some point, meaning the same abnormal cells, which become cancerous, could be in both children.’
Aden suffers from T-cell leukemia, where specialized cells that normally help the body fight infections do not form properly but instead grow and divide rapidly, building up in the bone marrow and preventing the production of healthy blood cells.
This can cause symptoms such as weakness, fatigue, bruising and vulnerability to infections.
As with many of the children in the documentary, Aden’s side effects are brutal, including diabetes and brain hemorrhages.
“When he’s in pain, he has extreme panic attacks that affect his entire body,” Rhea says. “My heart breaks for him in those moments. 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 remains cancer-free, said: “It’s crazy that we both had cancer, but the best thing about being a twin brother is knowing that we have each other’s backs.”
‘Sometimes Aden is afraid that something bad will happen to him.
‘I help him by asking him to calm down and breathe deeply.
“You are going through a very painful time, but I have already experienced it and I can tell you what is going to happen so you can prepare yourself.”
For Aden, who faces two more years of chemotherapy, his twin’s support clearly means a lot.
He said: ‘We fight and make fun of each other, but we never want to separate.
“When I was diagnosed, my first thought was, ‘I’m going to be okay.’ Seeing that Alec survived, I know I’m going to be okay, too.”
● Kids Like Us will be on Sky’s streaming service from Thursday.