In the years since Candlelighters was formed, survival rates for children with cancer have greatly improved. But so far, little has been done to improve the experience of living through and beyond cancer. The side effects of treatment can be traumatic, permanent, and even deadly, not to mention the practical and emotional tolls families face. A year ago we launched our pioneering supportive care research centre, looking at better ways to care for children with cancer.

So far the Centre has:

• Set up a Families and Young Person Board, an Advisory Board, and a Management Board to help set the priorities of the research, utilising the real-world experiences that families face and expert knowledge from professionals to map the future of the research.
• Won a bid from the University of York to run parental support courses.
• Opened a project looking at how to manage febrile neutropenia – (the increased risk of risk of serious infections that treatment for cancer produces) and begun developing a clinical trial bid.
• Created a job opportunity for a PhD student to be employed in the new academic year.
• Begun collaborating to supervise a PhD Fellow at the Leeds Dental Institute to improve access to treatment to prevent mucositis (the severe sore mouth, sore stomach and diarrhoea that can happen after cancer treatment).
• Been improving access to information from other studies that could help manage nausea and vomiting in children.
• Been invited to present to national and international audiences.
• Produced a dozen academic papers.
• Won four academic prizes.

This research is helping children and young people like Libbie, who was diagnosed with acute lymphoblastic leukaemia in January 2017, aged 13. After her initial treatment, Libbie later relapsed in September 2018 and required a bone marrow transplant. She spent a significant amount of time in hospital and suffered traumatic side effects from treatment.

Libbie says, “The treatment is amazing because it works the majority of the time for my kind of cancer and it’s got a big survival rate, but I think managing the side effects better needs to be a priority. The side effects were the reason why my mental health got so bad with the sickness and even the acne from the steroids. I think also being home, being in my own bed, having my family around me, and my friends coming to visit would have made things a lot better as well. I think getting young people home is especially important for sleep; during treatment, you need sleep, and hospital just isn’t the right place for sleep.

No one really appreciates how difficult it is to go through it – the sickness, the isolation, the side effects, everything together makes it horrible to go through. If it can be made even slightly better, one thing at a time, I think that’s the most important thing.”