Most parents would say their child is one in a million but Luke Everett’s rare cancer diagnosis means he literally is.
He was just six months old when he was diagnosed with the liver cancer, hepatoblastoma, which affects just one in a million young children.
It meant he became only the third child worldwide to take part in a clinical trial into whether a drug taken alongside chemotherapy could prevent the common side effect of hearing loss.
His mother Claire, 46, noticed something was wrong when he started feeding little and often before discovering a large, hard lump below his ribcage when changing him.
She took him to the local GP who immediately referred them to A&E at Frimley Park Hospital, Surrey, where blood tests and scans revealed it was cancer.
‘Cancer didn’t cross my mind as I hadn’t really heard that children that young could get cancer at that point. I was completely unaware as I’m sure a lot of people are,’ she said.
‘Everything changed that evening. The doctor pulled us into a room and said ‘your baby’s got cancer. We don’t know what type and we don’t know how serious it is, we don’t know if he will live or he will die’.
‘All they had seen was a large, 10cm tumour in his abdomen that was squashing all his organs.’
Luke, now 15, was diagnosed with hepatoblastoma, a type of liver cancer, when he was six months old
Luke was immediately referred to Great Ormond Street in London for further tests, shortly before Christmas in 2007.
He needed four rounds of an aggressive chemotherapy, cisplatin, to shrink the tumour before he had surgery to remove it, alongside half of his liver, in February. This was followed by more chemotherapy to ensure all traces of cancer had gone.
It was in the midst of the treatment that doctors asked Claire, a supermarket worker, and husband Graham, 46, an IT engineer from Farnborough, Hampshire, about the clinical trial.
‘It was a very difficult decision to make in the moment because you’re dealing with so much and then have to weigh up the risks and benefits,’ she said.
‘They explained that there was a very high chance that he would come out of it deaf or with some degree of hearing loss. You’re thinking of the short term and what gives him the best chance of survival but he’d also got a whole lifetime ahead of him.
‘We just went with our gut and decided to give it a go. It’s such a rare cancer that we felt we had a responsibility to Luke to try and to do something good for other people too.’
Luke was one of the trial participants given the drug, sodium thiosulfate rather than a placebo, during six chemotherapy sessions.
Because hearing loss can come up to ten years following treatment, he had regularly tests for years after his treatment finished before finishing the trial in 2018.
Now 15, Luke is a healthy teenager with full hearing, thanks the SIOPEL-6 clinical trial.
A keen gymnast, he regularly represents the county Hampshire, even competing in the British Championships last year.
He recently gave a talk on the pros and cons of clinical trials for his English GCSE, using himself as a case study.
‘He obviously understands how important clinical trials can be and what they have meant for him.
‘These drugs have such tough side effects and affect children differently. We know so many children now who have already been through so much with cancer but then are now living with so many side effects.
‘There is lots of work that still needs to be done to make the treatments kinder so children can have as much of a normal life as possible afterwards as well.
‘Hopefully that’s where charities like Cancer Research UK come in.’