Eve Wilson from Portsmouth is only 16 but already knows the terrible burden of cancer.
At all times – at the dance classes which are her passion, while studying for GCSEs, when hanging out with friends – she lives with a constant worry that the brain tumour she was diagnosed with five years ago could start to grow again.
It began with fatigue, blurred vision and excruciating headaches. And although doctors dismissed her problems as ‘just hormones’ – shockingly, one even suggested that she was making up her symptoms – her condition worsened and she lost her sight.
Eve Wilson lost her sight after suffering from a brain tumour
Tests revealed she had a craniopharyngioma – a rare tumour that grows at the base of the brain and can interfere with vision and the hormonal system.
For Eve, an operation shortly after the diagnosis to shrink 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 to feature in a new documentary called Kids Like Us, which will stream on Sky next week. Filmed in association with the charity Children With Cancer UK, it reports on the touching, 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 which are saving their lives.
The documentary comes at a pivotal 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 under-15s are now diagnosed on the NHS every year.
The good news is that, in that period, the number of children surviving cancer has improved as treatments have become more efficient.
However, the exact cause of this rise remains a mystery.
For Eve, her tumour was in a ‘really dangerous place, right smack-bang in the middle of my brain,’ she says.
It meant it couldn’t be removed completely, and to reduce the risks of it growing back she underwent proton therapy – targeted radiotherapy using high-powered beams of energy to destroy the tumour with minimal damage to the neighbouring tissue.
Even so, she has been warned the side-effects – insomnia, tiredness and hormonal disturbances – may last 15 years.
And while her tumour is stable, and controlled, the fear remains.
She says: ‘It’s scary, having the voice in the back of your mind saying, “This is not over… It could come back.” This is 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 teased them when chemotherapy made them bald, their fears of dying and hopes for the future.
Poignantly, they also talk about hiding their pain to make sure they don’t upset their parents.
All show exceptional resilience and good humour – none more so than seven-year-old live-wire Dulcie O’Kelly from Telford, Shropshire, who in 2021 was diagnosed with neuroblastoma, a form of cancer where nerve cells grow uncontrollably and lump together to form tumours.
Dulcie O’Kelly says she is determined to ‘kick cancer’s butt’
Despite surgeons removing a 2.5lb (1.2kg) tumour – roughly the size of a pineapple – from her abdomen, the cancer spread to her bones.
After a successful course of immunotherapy drugs, which boosted her immune system so it could recognise and destroy the cancer cells, she is now receiving regular chemotherapy to kill off any remaining cancerous cells.
To check 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 cheerfully determined, in her own words, ‘to kick cancer’s butt’.
There has also been a parallel rise in the number of young adults being 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 the age of 70.
And other types are on the rise in younger age groups, while rates have declined in older people.
Some experts blame the increased consumption of ultra-processed foods for this rise – as well as other factors such as antibiotic over-use, mobile phone radiation and particles of plastic in our drinking water.
Could these environmental changes also be to blame for the rise in childhood cancer cases?
Intriguingly, other experts believe a different aspect of modern life may be to blame – that children’s immune systems are not being given a chance to develop properly because of homes that are now super-clean.
‘The explosion of cancer in the younger adult population is clearly related to environmental exposure, but childhood cancers are not likely to be related to these factors,’ says Dr Sara Ghorashian, consultant haematologist at Great Ormond Street Hospital. ‘However, it’s possible they may be related to changes in the immune system. One theory is that because we as a society are now very clean, our immune systems are not educated from birth as they used to be.
‘We are delaying children’s exposure to infections until they go to nursery or school, and then their immune systems are suddenly activated, leading to problems. This may be why immune-system related cancers, such as leukaemia, are most common in those between the ages of two and ten.’
However, other experts believe more children are getting cancer because medical advances mean fewer are dying.
‘Of course, cancer is an awful 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 this is that, fortunately, there are many other conditions these days which no longer kill as many children – such as premature births and infectious diseases.
‘And although cancer case numbers may be going up, overall childhood mortality is decreasing, with children’s cancer being an area where there have been huge triumphs.’
But campaigners believe more still needs to be done to develop new treatments, arguing that while childhood cancers differ significantly from adult cancers, children are often still 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 £28 million drive to accelerate drug development. Dr David Jenkinson, head of childhood cancer at LifeArc, said: ‘Although survival rates for children with cancer have improved in recent 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 features 11-year-old identical twins Alec and Aden Robinson, from Fort Worth, Texas, whose extraordinary story is as touching as it is heartbreaking.
In 2019 Alec was diagnosed with acute lymphoblastic leukaemia, affecting the blood and bone marrow. He said: ‘I had this cough – I could barely breathe. My mum rushed me to hospital and they found a huge mass growing in my chest – it was pushing against my trachea so I couldn’t breathe.
‘They sent me in for an X-ray and found I had leukaemia.’
Twins Alec and Aden Robinson, who both developed leukaemia
After surgery to remove the growth – a massively enlarged gland in his chest caused by the leukaemia – Alec underwent chemotherapy. ‘The side effects weren’t nice,’ 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 any more. I felt that God had created a miracle for us.’
But in a ghastly twist, within a year, 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 that Alec was diagnosed with. I was devastated,’ says Rhea. ‘My first words were, “God, I can’t do this again.” ’
Experts believe that identical twins can be prone to getting the same diseases.
‘Some childhood leukaemias develop during birth,’ says Dr Ghorashian.
‘Identical twins have shared a blood system at one point, meaning the same abnormal cells, which become cancerous, might be in both children.’
Aden suffers from T-cell leukaemia, where specialist cells which normally help the body fight infection do not form properly but instead grow and divide quickly, building up in the bone marrow and preventing production of healthy blood cells.
This can lead to symptoms such as weakness, tiredness, bruising and vulnerability to infection.
As with many of the children in the documentary, Aden’s side-effects are brutal, including diabetes and brain bleeds.
‘When he’s in pain, he goes into extreme panic attacks affecting all his body,’ says Rhea. ‘Those are the times my heart breaks for him – no kid should have to go through half of what he has to go through.’
Luckily his twin is there to help. Alec, who remains cancer-free, said: ‘It’s crazy how we both had cancer – but the best thing about being a twin is knowing you have each other’s backs.
‘Sometimes Aden is scared something bad is going to happen to him.
‘I help by asking him to calm down and take deep breaths.
‘He’s going through pain. But I’ve already gone through it – I can tell him what’s going to happen so he can prepare.’
For Aden, who faces two more years of chemo, the support of his twin clearly means the world.
He said: ‘We fight and we rib each other – but we never want to be apart.
‘My first thought when I got diagnosed was, “I’m gonna be OK.” Seeing Alec survive, I’m know I’m going to be OK too.’
● Kids Like Us will be on Sky’s streaming service from Thursday.
