Monday 15th February is International Childhood Cancer Day, a day when people all around the world come together to observe and recognise the impacts of childhood cancer. In Yorkshire, over 150 children will be diagnosed with cancer each year and childhood cancer charity, Candlelighters, has been there for over 40 years to offer support to these children and their families.
For those lucky enough to not have any personal experience of childhood cancer, knowledge of its impact on families may be limited. Candlelighters say that having a child with cancer ‘turns families lives upside down in an instant’ and that after the initial shock and devastation brought about by a diagnosis, there are many practicalities to consider too. Parents might make the difficult decision to give up work, in order to be able to take their child to countless hospital appointments and to be able to continue caring for them at home.
Sally, mum to Marnie, is one of these parents. She said, ‘Up until December 2018, when Marnie needed chemotherapy, I had worked full time in the pharmaceutical industry but at that point had to stop work to care for Marnie. The treatment schedule and amount of scheduled and emergency hospital visits and stays made it impossible to do anything else’.
Marnie was diagnosed with Low-grade Pilocytic Astrocytoma or LGPA (a type of brain tumour) in March 2017 at just two years of age. Sally said, ‘There had always been something that wasn’t quite right and we had been back and forth to the GP with various things from swollen gums to strange jerky movements, but it always got put down to a virus. Marnie had never been a great sleeper, waking every couple of hours and then towards diagnosis, she was waking saying her head hurt and being sick. Finally a CT scan was done and that was when we found out she had a brain tumour.’
Marnie underwent surgery to decompress cysts which were causing a build-up of pressure within her head, and also to do a biopsy. In late 2018 after an MRI scan, it was decided that a treatment plan of chemotherapy would also be required for 18 months. Marnie, now six, lives in Harrogate and is doing well after finishing her treatment in June last year.
Candlelighters are committed to supporting children and their families facing childhood cancer. As well as emotional support for the patient and family, they also help with practical things like financial grants to help cover the costs of travelling to hospital, or entertaining children on the wards, enabling parents to get some much-needed respite. Sally says, ‘There are far too many things to list that Candlelighters have done for us since Marnie’s diagnosis and, unless you are being supported by them, I don’t think you can ever fully appreciate what they do.’
CEO, Emily Wragg, says ‘We are determined to improve the lives of families coping with childhood cancer, both now and in the future. We are proud of the many ways we support families emotionally, practically and financially – which has continued throughout the pandemic. We also bring hope to families by investing in vital research, education and training, helping to improve long-term outcomes for patients.’
Research from the Yorkshire Specialist Register of Cancer in Children and Young People, which is funded by Candlelighters, evidences that survival rates for children’s cancers continue to improve due to ongoing investment into researching treatments. The five year survival for all childhood cancers diagnosed in Yorkshire is now at 86%, compared to just 73% 20 years ago. Candlelighters says there is work to be done yet, and improving the experience of young cancer patient’s treatment as well as reducing longer term side effects becomes even more important as survival rates improve, which will be a focus for the charity going forwards.
Candlelighters are encouraging supporters to raise awareness of childhood cancer by talking openly about the impact it has on families. If you would like to support the work Candlelighters does in caring for families facing childhood cancer now and creating a brighter future through childhood cancer research, you can make a donation here: https://candlelighters.enthuse.com/donate#!/