Two youngsters among the first in the UK to be given a radical new cancer treatment are hopeful for the future after early signs showed it had reduced the size of their tumours.
Izzy Smith, 19, and Pixie Belle Sykes, 9, have both travelled hundreds of miles to be part of the potentially life-saving trial, being co-ordinated at the Great North Children's Hospital. Izzy, from Birmingham, was the first person in the country to be part of the trial - called FIREFLY - which involves simply taking tablets on a weekly basis which target faulty messages from the body's "control system".
Both girls were recruited to the trial after previous treatments like surgery, radiotherapy and chemotherapy failed to stop their tumours growing or returning. Pixie, just 9 and from near Manchester, had been left bedbound by the combination of her illness and the treatment for it - but now after being on the trial since January has even been able to return to regular dancing and drama classes.
The pair were both diagnosed with a low-grade glioma when they were younger. This is the most common kind of brain tumour in children and the second most common type of childhood cancer. Most, but not all, children with this kind of tumour survive, but between the damage it can cause and the side effects of invasive treatments, it can have a serious and debilitating impact on their lives.
Both patients travel to the GNCH for treatment, and with their parents spoke about their cancer journeys and the difference the new trial has made. Steve Smith, Izzy's dad, told ChronicleLive : "She was just four years old when she was diagnosed. It was December 2008. Before that she was having headaches and migraines.
"Izzy used to wear glasses and for some reason we had to go to hospital to get her prescription. She had the eye test, they gave her the prescription but I said 'before we go, she's been having these headaches...' The consultant had a look in the back of Izzy's eye, then brought back her boss and he wanted to do a CT scan to be safe. After that he came out and said could we go to his office because he had found something."
He explained that after surgery on Boxing Day 2008, she was formally diagnosed with a low-grade glioma on New Year's Eve. Since then she has experienced a range of treatments, and though none have permanently eradicated tumours.
Izzy said the new trial treatment made her feel positive about the future - she is studying business and interested in a career in marketing. She added: "It's been okay. Though there have been some side effects, it's been okay. The first scan after 12 weeks showed the tumour had reduced in size."
Steve continued: "Everyone seems to be excited by it. It's been successful so far, I'm positive."
Similarly, Pixie was diagnosed when barely older than a toddler in 2018. Like Izzy her parents had noticed issues with her eyesight. Mum Katie said she had noticed something wrong with her daughter's eye but "nobody apart from me could see it". "I thought I was going mad," she said. "I took her to the doctors, to the opticians, to the children's hospital and she was turned away."
Frustrated, the family arranged private appointments and Pixie's eyesight in one eye deteriorated rapidly. After an MRI scan, a tumour was diagnosed and little Pixie went under the knife. After two "awful weeks" the family were told that she had a low-grade glioma.
Since then, repeated attempts at chemotherapy had "stripped Pixie of her hair, her energy and her ability to live her life", Katie said. Now though, the little girl has made huge strides while on the clinical trial and is back at school regularly, making new friends and pursuing her great love - dance.
Pixie told ChronicleLive how she was excited to perform in a dance show in London next year - she will be Belle in a version of Beauty and the Beast. She said: "It's really nice to feel more normal. It's nice not to be feeling sick every two minutes and being able to make more friends."
Katie added: "It's been amazing, she's been able to get back to living a normal life. You wouldn't know she's on anything at the moment."
Paediatric oncology consultant Dr Quentin Campbell Hewson is co-ordinating the trial in Newcastle. The only other place it is taking place is at Great Ormond Street. He said while the results remained to be seen, early signs were a real cause for optimism.
"This is a new drug, but we have been trying to find ways of targeting these 'pathways' for a number of years," he said. "If, as early results indicate, this works better than the treatments we have had before, then it's not only a treatment that's less trouble for patients to take it will also be more effective."
He said the treatment appeared to have less risk than surgery or chemotherapy, and that it also could be more effective at stopping tumours growing. While the survival rate for this kind of cancer is good - he said: "Most children survive with this kind of tumour, but that can be at great cost to them. But there are some who don't survive - and that's because we run out of we can do to target the tumours.
"We think this could revolutionise that a child has. For example that in ten years time the experience if you are diagnosed with a tumour like this could be very different." The trial team is being supported by Children's Cancer North, the Sir Bobby Robson Foundation and the National Institute for Health and Care Research.
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