On the front-line — taking the fight to childhood brain tumours
In 1997, hundreds of people gave to our Golden Jubilee Appeal, coming together with the families of children battling brain tumours to help found our Children’s Brain Tumour Research Centre (CBTRC).
20 years later, we are celebrating the tremendous leaps in diagnosis and treatment made by our researchers thanks to the belief and backing of our supporters. Your continued generosity over the years and through Impact: The Nottingham Campaign has helped save the lives of hundreds of children with brain tumours and progress vital research into this complex childhood cancer.
In the last seven years, the average time taken to diagnose a child in the UK has halved thanks to national campaigns like HeadSmart. Our research into treatment techniques, alongside the biology and behaviour of childhood brain tumours, has been shared with researchers and clinicians worldwide. Today, 7 out of 10 children survive a brain tumour — more than ever before.
This is Amy’s story, told by her mum Jane.
“Anyone who has climbed a mountain knows how it feels to look down at the miniature world below and see the scars of the footpaths you have scaled. You get the same feeling back at ground level, looking up at the peak you conquered. It seems impossible you were up there,” recounts Jane.
“It will be 18 years this May since my daughter was left mute and paralysed by a brain tumour and I have the same unreal sense of perspective. Looking at her now — walking, talking, working, laughing — it takes a leap of imagination to put myself back in the skin of the devastated parent whose life had been turned to rubble by cancer.”
Amy is one of over 550 children with brain cancer treated at the CBTRC since it opened its doors 20 years ago. Amy’s treatment and rehabilitation was overseen by Professor David Walker — a respected paediatric oncologist and one of the co-directors of the centre.
“Amy went into an operating theatre for surgery to remove a brain tumour and within days was a mute, incontinent wreck. The bewildering thing was that the operation had gone remarkably well, but two days later she developed a condition called posterior fossa syndrome, a result of catastrophic swelling of the brain. It affects a quarter of children who have this surgery and leaves them with lifelong disabilities,” said Jane.
“Then came the years of rehabilitation: the minuscule signs of voluntary movement returning to Amy’s short-circuited body; the physiotherapy; speech therapy; special needs support; the battles with authorities. The journey has been uphill every step of the way.”
“Amy is now a young woman of 26 and we are immensely proud of her. Her balance is poor and her speech still harbours traces of that cerebellar drawl, but she can walk without aid and join in any conversation. She got her A levels and has a job in a busy kitchen. Her working memory is unreliable, but she has the long-term memory of an elephant. And with her highbrow literary tastes, you don’t patronise Amy at Scrabble. For now, it’s easier for her to live at home with us, but independence is possible for Amy when and if she wants it.”
One disease, two enemies
Children’s brains are particularly vulnerable to the potential side effects of treatments because they are still developing. Despite significant progress, two-thirds of all children who do survive are left with disabilities — life-long damage caused by both the tumour itself and the intensive treatments required to save their young lives.
“Before her operation, the neurosurgeon explained that removing a brain tumour was like trying to extract the yolk from a raw egg without disturbing the white. In an instant we saw it: the thin membrane of the yolk rupturing, the egg white torn and tattered, streaked with yellow. When I hear that two thirds of children with brain tumours survive, I always think about that egg yolk. It’s not enough to cure the cancer if it leaves the child with major disabilities,” said Jane.
“Looking back at the mountaintop of remission, I now see we had two enemies. One was cancer, its malignant cells waiting to slay us. The other was brain damage, the cataclysmic landslide that buried the child we knew.”
“Last September I ran the Robin Hood half marathon to help raise funds for the CBTRC. My hope is that research will lead to a day when children don’t have two battles on their hands, one against cancer and the other against brain damage. That’s why we have to keep working together and supporting each other — so future generations only have one battle to fight.”
Read more of Jane and Amy’s story on The Telegraph online.
20 years helping children like Amy to enjoy a brighter future
For the past two decades, visionary clinicians and researchers, along with generous donors, volunteers and fundraisers, have all helped to make the CBTRC into the world-leading research centre it is today. Our dedicated teams take a multi-faceted approach — they work with specialists from a wide range of departments to identify and treat patients in new ways that reduce the risks of brain injury, and tackle tumour types which are currently resistant to treatments.
David Walker is Professor of Paediatric Oncology and Co-Director of the Children’s Brain Tumour Research Centre at the University of Nottingham.
“I cannot thank enough everyone who has supported our work and strengthened our voice over the years — especially our patients and their families who bravely share their stories to help raise funds and awareness. The Impact Campaign along with your belief and generosity across the years has helped accelerate and sustain our research progress.
“I have treated many children over the past 20 years and I remember each of them — when you treat a child there is always something that stays with you. In the future, I believe there will be a test to predict if a child will develop a brain tumour, using the genetic information that we have discovered over the past 10 years. You can help drive forward new developments like this. Together, we can bring the day when all children can lead full lives, free from this devastating disease, a step closer.”
This year, we are honoured to report the official closing of Impact: The Nottingham Campaign. A huge thank you to all our 18,500 donors who have helped raise a phenomenal £242 million, and to our 1,678 volunteers who have so generously shared their time, skills and expertise with our University community.
While our Impact Campaign is coming to an end, our work is not done. We will build on these strong foundations, ensuring that our University always remains a place where merit — not background — defines who becomes a Nottingham student, and where world-class research continues to tackle the global challenges faced by generations today and in the future.
Together, we can continue to give a brighter future to children with brain tumours.
Find out more about Children’s Brain Tumour Research.
Words: Jane Redman, Victoria Hodson
Photography: Andrew Fox, Alex Wilkinson, Thinkstock
Special thanks to Jane and Amy Redman.
