Two young people with a brain tumour are taking part in a clinical trial at Newcastle Hospitals and so far, the results show real promise.
Nine-year-old Pixiebelle Sykes from Manchester and 19-year-old Izzy Smith from Birmingham have a low-grade glioma, the most common type of brain tumour in children.
Low grade gliomas have a good chance of recovery, but treatments such as chemotherapy, radiotherapy, and brain surgery can have life-changing side effects on young people, including heart problems and issues with brain development.
Pixiebelle and Izzy have previously undergone surgery and chemotherapy, but unfortunately both girls relapsed and suffered from side effects.
The trial they’re part of involves taking medication once a week at home with a monthly visit to Newcastle Hospitals’ Great North Children’s Hospital (GNCH).
The trial, called FIREFLY, has been co-ordinated by Dr Quentin Campbell-Hewson and run by Professor Simon Bailey, who are both consultant paediatric oncologists at GNCH.
Dr Campbell-Hewson said:

“Low grade gliomas can be difficult to manage because treatments like chemotherapy can cause long-term damage, especially in children whose central nervous system is developing.
“Unlike chemotherapy and radiotherapy, this particular drug targets the tumour without damaging the surrounding healthy areas. So far, the results are promising, and we are hopeful that this could change how we treat low-grade gliomas in the future.
“We are incredibly grateful to the Sir Bobby Robson Foundation and Children’s Cancer North for their ongoing support which helps us to offer cancer trials to children and young people.”
Professor Simon Bailey, who specialises in paediatric neuro-oncology and is a professor at Newcastle University, sees Pixiebelle and Izzy in clinic every month. He said:
“When Pixiebelle and Izzy first came to see the team, they had already undergone surgery and gruelling rounds of chemotherapy without long-lasting success.
“Pixiebelle and Izzy’s progress since starting the trial has surpassed all our expectations. I’m delighted that we’ve been able to offer the opportunity to be part of this trial and the difference it’s making to date.
“I want to extend my thanks to everyone involved in getting the trial up and running, including the research nurses, the paediatric oncology nurses, the trial and data managers, as well as every member of the wider team who works tirelessly to deliver vital trials to young cancer patients.”
Newcastle Hospitals is one of only two hospitals in the country running the trial and one of 36 centres worldwide. Izzy was the first patient in the UK to take part in the study.

Mark Robson, chair of the Sir Bobby Robson Foundation, says: “It’s great to hear about the progress being made in treating brain tumours through FIREFLY. Our Foundation funds four specialist research posts at the Great North Children’s Hospital and every step forward in terms of cancer research means improved outcomes for children and young people, like Izzy and Pixiebelle. We wish them both all the very best with their treatment.”
Chris Peacock, Chair of Children’s Cancer North, added: “Children’s Cancer North’s mission is to make life better for children with cancer. Over the past 40 years it’s been at our core to fund vital research, and the close working relationship between Newcastle University and clinical teams at the Great North Children’s Hospital is what leads to patients being able to access these early phase trials. It’s something to be really proud of in our region, and we’re delighted that both Pixiebelle and Izzy are doing so well.”
The study is supported by the National Institute for Health and Care Research Clinical Research Network (NIHR CRN), the research partner of the NHS, public health and social care.