Although treatments are much more effective now, for children and young people, they are harsh and have terrible side effects on their smaller bodies.
Now, Yorkshire children’s cancer charity Candlelighters has partnered with the University of York to establish a new £1m research centre to find better ways to manage the side effects children endure during treatment, in a bid to reduce suffering and deaths.
Improve lives
The Candlelighters Supportive Care Research Centre will be officially launched on 9 November at an event at the University, with support from My Renewable Energy Ltd. The launch will see members of the Yorkshire business community and individuals from across the county come together in a shared desire to improve the lives of children with cancer.
Experts behind the new Centre say there has been research in this area, but it’s often sparse, piecemeal and inadequate, carried out in single centres with little collaboration. Research into effective, kinder care is traditionally under-resourced because cancer charities are often focussed on funding cures.
In the short term, the centre will look at how to minimise hospital stays, prevent severe mucositis (mouth ulcers) and prevent nausea and vomiting. In future, research will focus on other things that matter to children and families – and which have the greatest impact.
Managing pain
Bob Phillips, Professor of Paediatrics and Evidence Synthesis at the University of York and Hull York Medical School (HYMS), and the director of the new centre, said: “Our research won’t cure cancer, but it will make a bigger difference to more people, faster. It will focus on identifying ways of managing pain and infection as a result of treatment.
“Significant progress has been made in understanding and treating childhood cancers – and today, around 80% of children or young people diagnosed with cancer survive.
“Treatments, however, are mostly tailored for adults, and in children the reaction to these treatments can be very different, and have serious and life-threatening side-effects.”
George Gallimore, from York, was just two and a half years old when he was diagnosed with leukaemia in 2013. He was admitted to Leeds Children’s Hospital to begin treatment, a process that would last for three and a half years, and he would spend at least nine months in hospital over this time.
Chest infections
George’s father, Mark Gallimore, said: “George spent the first six weeks after his diagnosis in hospital. He had to go through things that no two-and-a-half-year-old should have to go through.
“Following his treatments he would pick up virtually everything; he had shingles nine times, numerous chest infections, bloating, mood swings, temperatures so high he would have seizures, and bowel and bone damage that impact him to this day.
“George has just had his 10-year review and has moved on to his long-term aftercare. Thankfully he doesn’t remember some of the worst things he went through, but it will forever haunt my wife and I.”
High-quality research
Emily Wragg, CEO of Candlelighters, said, “For over 45 years, our charity, Candlelighters, has supported thousands of Yorkshire children and families through childhood cancer. We’ve seen first-hand the devastating effect this disease has.
“The suffering a child goes through during their treatment, which sadly can result in death for some, is heartbreaking, and we are determined to do something about it.
“We are proud to be working alongside the University of York to establish the first Candlelighters Supportive Care Research Centre.
“The centre will enable the world’s leading supportive care experts to carry out high-quality research. It will build capacity by investing in future supportive care specialists. And it will save lives, reduce suffering and bring hope to children and young people with cancer – not just in Yorkshire, but right around the world.”