Families affected by childhood cancer joined forces to launch a new fundraising campaign celebrating 20 years of the Children’s Brain Tumour Research Centre (CBTRC). The University of Nottingham’s annual fundraising campaign Life Cycle will this year focus on raising more money for research into the deadly form of cancer.
To launch the £500,000 appeal, which this year will involve a ‘superhero stroll’, children at different stages in their treatment and their families, as well as families who have lost loved-ones to the disease, came together on International Childhood Cancer Awareness Day along with University experts, surgeons and students. University Sports teams, who have launched a partnership with the appeal, were also on hand to give the children fitness challenges as well as sports demonstrations.
The CBTRC has been at the forefront of examining and removing childhood brain tumours since the 1980s. Parents who understand the benefits of the work include Neenu Minhas, 45, and her husband Raman, 45. The family moved from Leicester to Nottingham to be nearer to the centre after their son Aiden was diagnosed with a rare and aggressive tumour when he was only two years old. Aiden was always an active child until the couple realised that he was becoming more restless and was suffering from sickness. He was rushed to hospital where a scan found an aggressive tumour. Luckily it was removed, but Aiden is still undergoing treatment after doctors discovered two new lesions. Raman said: “We were extremely lucky that Aiden’s tumour is an area of special interest for Professor Richard Grundy who is always willing to look beyond what is conventional and look at other options to choose a treatment protocol based on best current data.
“We are grateful every single day for what Mr Macarthur and Professor Grundy at the Children’s Brain Tumour Research Centre have done for our family". At the launch Aiden was reunited with his surgeon Donald Macarthur, honorary clinical associate professor in neurosurgery at CBTRC. Mr Macarthur said: “The centre was founded 20 years ago and now has a number of distinct but overlapping research groups with a very large number of staff. We have been very successful in driving down the time to diagnosis of children’s brain tumours through a programme over the past five years called Headsmart and we’re beginning to develop enhanced understanding of how we can treat children more safely and more effectively.
"If you can pick up a child’s tumour when it’s smaller it’s far more likely that I as a surgeon will be able to remove it and being able to completely remove a tumour makes a difference to the chances of curing that child of the brain tumour. Children who present later with brain tumour are more likely to have symptoms and signs due to damage of the brain and the nature of the nervous system is that you cannot reverse the damage once it’s happened.
"Sadly, although brain tumours are the commonest cancer killer in children they currently attract less than one per cent of national cancer research budget so they make the biggest impact in the children’s cancer world yet receive a very small amount. We’re at a very exciting time for brain tumour research and we are very pleased to have this support from The University of Nottingham through Life Cycle 7.”
Steve Mills, 66, and Cheryl, 61, of Ruddington, were at the event after their granddaughter, Eloise, 12 also a patient of Mr Macarthur, was diagnosed with a tumour when she was four. Steve said: “When Eloise first went for her operation we were very upset and scared that we might lose her as we didn’t realise her tumour was benign at the time. The university does far more research than just brain tumour research for example some of the research being done in lighting up solid cancers that will be able to tell us immediately whether a woman has got breast cancer without having to do a scan. It’s all state of the art, breaking news and it’s being developed here where we live - we’ve always lived in Nottingham and this shows why Nottingham is one of the best universities you can go to."
And families of those who weren't so lucky were also on hand to add their support to the campaign. Halim Mjeshtri, 37, of Leicester, has raised nearly £50,000 for the research centre after his four-year-old son Alfi died from an aggressive tumour. He said: "It was too late for Alfi and he passed away. He turned four-years-old in hospital when we found out what was wrong with him. We have raised money ourselves for the research centre for the last five years. We went through some difficulties when coming to terms with it and why we didn't have a chance. We were told that what Alfi had is very rare and there is not much research on it. It is not just about raising money, it is also about awareness, because the earlier you find it, it will be treated before it grows too big."
Each month, more than 45 parents in the UK are told their child has a brain tumour. Almost 40 per cent of children diagnosed with ependymoma do not survive and of those that do, two thirds are left with major disabilities.
Researchers at the CBTRC are trying to change that and their world-leading research is working to understand what causes ependymomas to develop. This would be a major breakthrough that could lead to screening tests to detect brain cancer early, and safer, more effective treatments that don’t have the long-term side effects that many patients suffer.