A Pudsey family have spoken about the life-changing impact a childhood brain tumour has had on their lives.
Toddler Kasper McMullen was diagnosed with a brain tumour and high hydrocephalus (fluid around the brain) in July 2019, when he was just 22 months old.
Kasper’s mum, Emma, said:
“In the months leading up to the day of diagnosis, Kasper went from being a typical happy toddler to slowly losing his ability to do everyday things. He found crawling hard and tiring, and he eventually lost the ability to walk.
“When sitting, he would tilt his head onto his shoulders or rest his head in his hands. He went from eating almost anything to only eating little bits of certain foods, and became very tired and slept more frequently.
“Then came the nausea and sickness, which was very unusual for him. After four days of this, along with all the other signs, I just knew something wasn’t right.
“After trying to get help from my GP and health visitor, I eventually took him to A&E. He was rushed straight in for a CT scan, which was when he was diagnosed with a brain tumour and high hydrocephalus.”
Kasper immediately underwent an operation to reduce the fluid and relieve him from the terrible pain he was in, before having major brain tumour removal surgery the following week.
He then underwent a long journey of operations, procedures, scans, chemotherapy and radiotherapy.
The location of Kasper’s tumour meant his head was unable to drain the fluid on his brain naturally itself, so he was fitted with a shunt, which now does this for him. After his brain tumour surgery, Kasper lost his speech and his ability to walk and crawl, and is currently unable to eat orally.
“Kasper has come through this remarkably well, but he still has a lot to learn in order to regain his independence.
“He does get frustrated quite a lot as he can remember running around before and having little conversations with us, and he can’t do any of that now. Things just aren’t the same as they were, but we are all learning to adapt to the changes and we’re hopeful that one day we will have Kasper back talking, walking and eating with us again.”
Candlelighters have provided support for Kasper and his family since his diagnosis, providing them with practical support and entertainment on the wards, wellbeing therapies and trips out, as well as financial support. Emma added:
“The amazing Candlelighters team have been very supportive since the beginning. When everything felt like a tornado sweeping through our heads, they were there to talk, and helped us out with costs of food, petrol to and from the hospital and parking fees.
“A lot of the arts and crafts on the wards are funded by Candlelighters, and these are much loved by children of all ages. Even when we weren’t on the ward as often, we were never forgotten.
“They often contact us about their fully-funded events for parents or siblings. Kasper’s dad Paul has been to a couple of the parent events and had a brilliant time meeting and chatting with other dads.”
In Yorkshire alone, around 50 children are diagnosed with brain and other central nervous system tumours each year. During Brain Tumour Awareness Month, Yorkshire children’s cancer charity Candlelighters aims to raise awareness of brain tumours and their impact, and the need for greater research funding.
Brain tumours are the leading cause of death for patients with cancer, and account for a third of childhood cancer deaths. For those who survive, however, there are often many long-term impacts that will affect their lives.
Treatment for a brain tumour is very invasive, with surgery to remove the tumour being a balance between removing as much of the tumour as possible and limiting impact to functions such as speech and motor functions.
Children who require radiotherapy targeted at the brain can suffer from long-term impacts on cognition, growth and hormone levels. There is also growing evidence of long-term psychological and social impacts for childhood cancer survivors.
The Yorkshire Specialist Register of Cancer in Children and Young People, which has been funded by Candlelighters for almost 40 years, aims to carry out research which also focuses on improving the lives of cancer survivors.
The Yorkshire Register has collected detailed information about children and young people diagnosed with cancer since the 1970s, and holds information ranging from their cancer type and treatment, through to socioeconomic data, information on their mental health and education, with plans to include additional data on employment outcomes.
This rich asset of data about childhood cancer is managed by Professor Richard Feltbower of the University of Leeds, with support from Professor Adam Glaser, medical director for the registry.
The register is now used for studies worldwide and is helping us to understand the survival and long-term effects of cancer for children and young people. Prof Glaser said:
“If you’re told your child has a life-threatening illness, the absolute number one priority is keeping them alive. But now, as more and more children and young people survive, we’ve got to also make sure that the quality of survival is as good as possible. We’ve got to get them back on to a life trajectory they would’ve had if they’d not had cancer.”
Dr Sarah Milner, a researcher at the University of Leeds and currently funded by Candlelighters, is using The Yorkshire Register as part of a study into the social outcomes of childhood cancer survivors.
Her initial work has found evidence that children with cancer, and in particular those with a brain tumour, see negative impacts on their academic achievement, future employment, their ability to live independently, and even their future relationships.
Her work, alongside that of the Yorkshire Register, will help to uncover and understand the long-term impacts of cancer on childhood cancer survivors, which will enable researchers to focus new studies on ways to reduce and one day, hopefully, remove these impacts.
Emily Wragg, CEO of Candlelighters said:
“At Candlelighters, we have a mission to bring light and hope to every family affected by childhood cancer across Yorkshire.
“For over 45 years, we have been there for families, supporting them through a journey that is simply unimaginable unless you have been through it.
“One of our research aims is to improve the quality of life for children and we are proud to support research such as the Yorkshire Register and Sarah’s study to ensure children like Kasper are able to not just survive but thrive.”
Candlelighters rely on the general public and local businesses’ support to continue their investment into childhood cancer research and to support children and families in Yorkshire through childhood cancer.
The charity’s fundraising income target from individuals and businesses was cut by almost a half last year. Candlelighters are asking for support through donations, by fundraising or taking on a challenge event.