Rhabdomyosarcoma - A Booklet for Parents

This website has been created to enable parents and families whose children have been diagnosed with rhabdomyosarcoma to access a booklet about the condition. The booklet was written by Dianne Haley whose daughter Claire was diagnosed and treated for rhabdomyosarcoma in 2004/05 at the Royal Hospital for Sick Children in Edinburgh. The booklet was updated in 2012.

Dr Jon Pritchard, Dr Hamish Wallace, Sister Caroline Rose and the wider team at the Royal Hospital for Sick Children and the Western General Hospital in Edinburgh provided professional medical advice for this booklet. The booklet is dedicated to Dr Jon Pritchard who believed passionately in the role parents and families could play as part of the caring team.

Claire, aged 7 years, on the right, with her brother Alexander

The booklet has been written to help families whose child has been diagnosed with rhabdomyosarcoma, a type of cancer that affects over 50 children in the UK every year.

Section 1 of the booklet contains facts about the diagnosis and treatment of rhabdomyosarcoma, section 2 provides practical information on what to expect as your child embarks upon his or her course of treatment and section 3 contains definitions of medical terms and information about the medical team responsible for the care of your child.

We cannot answer specific questions about your child's particular tumour or treatment plan. Individual discussions with your consultant and medical team will provide you with this. What the booklet does provide in one place is all the general information you will need to know about your child's illness.

Our grateful thanks to Varian Medical Systems for funding the print costs.