Cancer survivor, 8, 'very happy boy' after 'traumatic' journey
A Leicestershire eight-year-old who survived a “traumatic” cancer journey is now “a very happy boy”, his mum has said. Cohen Earley was four years old when he was diagnosed with stage four alveolar rhabdomyosarcoma, an aggressive form of soft tissue cancer.
The Enderby youngster was “Toy Story mad” at the time the cancer was found in his leg, mum Kat said. He was suddenly “thrown into a world of needles and tubes and disgusting medicines”.
But Cohen has now been in remission for three years, and he is helping other youngsters through Cohen’s Fight, a special 'named fund' at Children's Cancer and Leukaemia Group (CCLG), which raises money to help fight childhood cancers. The appeal has already funded two new research projects into rhabdomyosarcoma.
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Kat said: “We set up Cohen's Fight as we knew people needed more awareness about rhabdomyosarcoma, both so it could be detected sooner, for all those children who did not get their treatment soon enough, and to push for much kinder treatments, because of the long-term effects that still impact Cohen’s health today.”
Kat was taking Cohen up to bed in March 2020 when she felt a lump on the back of his left leg. Cohen had never complained of any pain and had no symptoms to indicate anything serious, his aunt Alicia said on the Cohen's Fight fund-raising page.
She said: "Kat and Adrian, Cohen’s dad, booked him an appointment with the doctors, who referred him straight away to get it checked out. He got referred to hospital to have an ultrasound, and from then on it was a massive waiting game to have different tests, like MRI scans and biopsies, at the Leicester Royal Infirmary (LRI) and Queen’s Medical Centre, in Nottingham."
Cohen was diagnosed in May 2020. Alicia said that because of Covid precautions, "the worst imaginable situation became even harder." She said: "Only one parent was allowed to go into the hospital each time Cohen had a different test. He’d also have to go in two days before his appointment to have a Covid test. So, everything was a lot more difficult."
Recalling Cohen's life before cancer, Kat said: “He was Toy Story mad, always at the park, always kicking a ball about.
"He was very energetic. Even going to a doctor's waiting room, getting him to sit still for five minutes was going to be a challenge."
Cohen's life inevitably changed after his diagnosis. “He really grew up through those first few months, listening to the doctors and nurses and doing all sorts of things, taking all sorts of medicines," said Kat. "It was really scary.
“We saw him mature beyond his years over those months of gruelling treatments. We were under a psychotherapist because things affected him - his diet, because he was tube fed. We're still struggling with getting the right foods in. The texture and smells will trigger the things he had during chemotherapy." The side effects of chemotherapy for Cohen also included severe mouth ulcers, and illness when the line into his chest used for the chemotherapy chemicals became infected.
Money raised through Cohen’s Fight has already helped to fund new projects aimed at improving the treatment and care of young rhabdomyosarcoma patients. The research projects, led by Professor Janet Shipley, at the Institute of Cancer Research, and Dr Darrell Green, at the University of East Anglia, aim to find a better way to predict how aggressive rhabdomyosarcoma will be at the time of diagnosis, so all patients receive the right amount of treatment.
A spokesperson for the CCLG said it could be "difficult for doctors to know how best to treat certain patients because there is no way to assess how intensive their treatment needs to be”.
Kat said the support from the Enderby community in particular had been “invaluable” in raising the money - £15,000 - used for the studies. She said the money had been raised through "a mix" of activities, including a Santa Fun Run from the local school, a superhero fun run around the neighbourhood park and when one of the dads from Cohen's school did a challenge with PureGym.
Kat said Cohen was now "a very happy boy". "He has got a really good group of friends, and he has started to be more aware and asking me questions about why did he have cancer, whereas when he was four we didn't even mention the word," she said. "He's started to understand it.
“It doesn’t really affect him day-to-day. He still has to go to school. He doesn’t mind going to hospital because he gets time off.”
Prof Shipley said the project aimed to find “markers that can identify rhabdomyosarcoma patients that are at greater or lesser risk of succumbing to their disease with current treatments.” A spokesperson for the CCLG said the research team had “already found markers that are only found in certain conditions in tumours, like low oxygen levels”
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