My child has a brain or spinal tumour
Published: Jan 2017
Next review: Jan 2020
This guide gives an overview of the conditions, diagnosis, treatment and rehabilitation, as well as how to look after your child, yourself and loved ones. It was written with the help of parents and carers. They told us what it was like for them, and what they learned along the way, so that we can share it with you. You can read their experiences and tips throughout this booklet.
Be assured you are not alone. Between 400 and 500 children are diagnosed with brain or spinal tumours each year in the UK. That means many families have been through this journey over the years, and there is support out there, from them and from your child’s health professionals.
You can order free physical copies of this publication by adding it to the cart, or you can download the digital version.
How this resource was made
This edition was edited and revised by Dr Nicky Thorp (Consultant Clinical Oncologist, Liverpool and Chair of the CCLG Neuro-Oncology Special Interest Group) and Claire Shinfield (CCLG Information Officer) in conjunction with the CCLG Publications Committee, comprising multiprofessional experts in the eld of children’s cancer. The original 2008 version entitled ‘Brain and Spinal Tumours in Children and Young People: A Parent’s Guide’ was edited by Monica Hopkins (Advanced Nurse Practitioner, Liverpool) and Professor Barry Pizer (Consultant Paediatric Oncologist, Liverpool). Editorial support was provided by Eleanor Stanley (Writer).
We would like to express our deepest thanks and gratitude to Cate, Debbie, Jane, Julie and Rachel who talked honestly and openly about their experiences as parents of a child with a brain tumour, helping us to develop this booklet for future families. We would also like to thank parents from the Brainbow rehabilitation service in Cambridge who also contributed to the review process.
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