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UK Patient Information Guide: Children's cancers

This section lists information resources available in the UK for cancer patients and their families. For resources giving general information on cancer, its treatments and effects, please use the links in the right hand menu.

Books

A dragon in your heart
Author LEBLANC, Sophie
Publisher Jessica Kingsley
Description This book uses a fairy story approach to help young children to come to terms with cancer. This book is aimed at young children, but would need an adult to read it with the child to explain some concepts.
Date 1999
A Young Person's Guide to Lymphoma
Author Lymphoma Association
Description A useful and clearly written guide for teenagers/adolescents, which provides information on issues such as diet, sex and fertility, going into hospital, going home after treatment, and relationships with family and friends.
Date 2003
Obtain from Free from the Lymphoma Association on 0808 808 5555
URL http://www.lymphoma.org.uk
Alex's journey: the story of a child with a brain tumor
Author American Brain Tumor Association (ABTA)
Description A fictional story for children about a boy named Alex who has a brain tumor.
Date 1994
Body and soul: children, teenagers and cancer
Author RAGG, Mark
Publisher Hill of Content Publishing
Description For families with children who have been diagnosed with cancer. Could also be useful for health professionals. Non-technical and written for the lay person.
Date 1994
Brothers and Sisters: how to help the siblings of very sick and disabled children - a booklet for families
Author Barrell, Sarah
Description Aimed at parents and carers and offers advice and information for supporting siblings of sick children. This is a very well written booklet with good practical advice and reference to other useful organisations. Cost includes postage and packing.
Cost £8.50
Obtain from Sarah Barrell, PO Box 95, Witney, Oxfordshire. OX29 4WJ
Childhood Cancer
Author Steen, R Grant & Mirro, Joseph (eds)
Publisher Perseus
Description Comprehensive information on the main aspects of childhood cancer. Includes detailed chapters on the common and rarer types of childhood cancer as well as treatments such as chemotherapy, radiotherapy, and bone marrow transplants. The book is aimed at parents of children with cancer. It is written by doctors and scientists at a US research hospital so some of the information may not be relevant to the UK reader.
ISBN 0-738202-77-0
Date 2000
Childhood Cancer Survivors: A Practical Guide to Your Future
Author Nancy Keene
Publisher O'Reilly & Associates
Description Although American, this book is still very relevant for the UK. It has been written for people who had cancer as a child and have survived into adulthood. It has chapters on emotions, relationships, staying healthy and childhood cancers. The second half of the book deals with the long-term side effects that can occur in each of the body's systems.
ISBN 1-565924-60-6
Date 2000
Childhood cancer: understanding and coping
Author EKERT, Henry
Publisher London, New York: Gordon & Breach
Description Comprehensive medical text, but quite explicit on some of the worse aspects of childhood cancer. Deals with psychological aspects of emotions and reactions to childhood cancer. It is suitable for very well informed and prepared parents.
Date 1989
Childhood leukaemia: the facts
Author LILLEYMAN, John S
Publisher Oxford University Press
Description A book written for parents, explaining the development of leukaemia, the treatment that will be offered, what sort of progress can be expected, and the after effects of leukaemia and its treatment on survivors.
Date 2000
Fighting the big C: a guide for young people and their families to understand cancer and its treatment
Author Palmer, Sarah J
Description Contents: What is cancer?, cancer treatments, side effects, blood and bone marrow, preventing infections, hygiene and diet, keeping a positive attitude, thinking about your future and looking ahead. Available from CLIC, The Cancer and Leukaemia Childhood Trust, 3 Nugent Hill, Cotham, Bristol BS6 5TD
Date 1996
Fighting the big C: a guide for young people and their families to understand cancer and its treatment
Author PALMER, Sarah J & CLIC
Publisher CLIC
Description This booklet explains what cancer is. It covers different types of treatments, how to cope with side effects, effects on the blood and bone marrow, and how to prevent infections.
Date 1994 [2003 reprint]
Obtain from Available from CLIC, Unit 6, Emma-Chris Way, Bristol, BS34 7JU
Tel: 0117 311 2600.  Also available free online.
URL http://www.clic.uk.com/BIGC/bigc.htm
Jack's diary
Author HUBBARD, Deborah
Publisher Leukaemia Research Fund
Description The real life story of a boy receiving treatment for Acute Lymphoblastic Leukaemia (ALL) and includes real life pictures and cartoons.
Date 2002
Joe has leukaemia
Author BARTON, Victoria et al
Publisher Sargent Cancer Care for Children
Description An illustrated book for children with leukaemia, or for children who know someone with leukaemia. Explains about leukaemia and the treatments, with lots of pictures. Also in series: Mary has a Brain Tumour and Lucy has a Tumour.
Languages English
Urdu
Bengali
Punjabi
Gujarati
Welsh
Kathy's Hats: a story of hope
Author Trudy Krisher
Publisher Albert Whitman & Company
Description A book about nine-year-old Kathy, who has chemotherapy for cancer. Her hair falls out and she has to wear hats. Well illustrated and a supportive story.
ISBN 0-807541-16-8-1
Date 1992
Living with leukaemia
Author WESTCOTT, Patsy
Publisher Raintree Steck Vaughan
Description Most appropriate for siblings or friends of a child with leukaemia. Includes stories about children who are either being treated for or have recovered from the disease. Gives simple explanations of leukaemia, tests and treatments and explains that not all children are successfully treated.
Date 2000
Me and my face
Author HENDERSON Victoria & LET'S FACE IT
Publisher Millbury, 1989
Description A light-hearted look at facial disfigurement. It is written for children and their parents.
Obtain from Christine Piff, Let's Face It, 72 Victoria Avenue, Westgate On Sea, Kent CT8 8DH. Tel: 01843 833 724.
Me and my marrow
Author CROWE, Karen
Publisher Fujisawa Healthcare Inc
Description A comprehensive children's guide to bone marrow transplants.
Obtain from Only available online at http://www.fujisawa.com and http://www.meandmymarrow.com/mainie.html.
My Brain Tumour Adventures: The story of a little boy coping with a brain tumour
Author Dempsey, Sharon
Publisher Jessica Kingsley Publishers
Description An illustrated childrens story about a little boy with a brain tumour. This book is designed to help children and adults come to terms with chemotherapy, radiotherapy and the side effects of their medicines. However, the book does use some adult terminology and should be read accompanied by an adult to help explain these words.
Date 2003
When a child has cancer
Author FAULKNER, Ann [et al]
Publisher Chapman & Hall
Description This book describes a project where children over seven and close family members were interviewed. This book would principally be of interest to professionals involved with the care of children with cancer. It can be very hard going but has a very useful literature review and UK references.
Date 1995
Wilms tumor: what now?: a practical guide for parents of children with Wilms tumor
Author WURZ, Jeannie
Publisher Kidney Cancer Association
Description Written for parents of children with Wilms tumour covering what it is, diagnosis, treatment, and post treatment interspersed, with children's experiences. Written for the US reader and some aspects not relevant to the UK but still a useful patient resource.
Date 2001
Obtain from Available online: www.kidneycancerassociation.org
You and leukaemia: a day at a time
Author BAKER Lynn S
Publisher Philadelphia: WB Saunders
Description Written for children, this book has lots of lively illustrations as well as clear descriptions of, what leukaemia is, having treatment and living with leukaemia. It is an American book but is distributed in UK and still useful.
Date Revised 2001
Young people with cancer: A handbook for parents
Author National Cancer Institute
Description Book and Website. A very comprehensive publication for parents who have a child with cancer. It gives information on all the stages of a child’s illness and what to expect. It explains the different treatments and side effects etc. However, as an American publication not all details will be relevant and it can be a little bit overwhelming with the amount of detail.
Obtain from Free online at: www.cancer.gov/cancerinfo/youngpeople

Booklets and factsheets

A friend in need
Author Sargent Cancer Care for Children
Description Leaflet
Obtain from Sargent Cancer Care for Children, Griffin House, 161 Hammersmith Road London W6 8SG
Tel: 020 8752 2800 Email: care@sargent.org 
URL http://www.sargent.org
A parent's guide to children's cancer
Author Cancerbackup
Description Booklet
Obtain from Online version available
Order from Cancerbackup
Acute lymphoblastic leukaemia (ALL) in children
Author Cancerbackup
Description Factsheet
Obtain from Online version available
Order from Cancerbackup
Acute myeloid leukaemia (AML) in children
Author Cancerbackup
Description Factsheet
Obtain from Online version available
Order from Cancerbackup
Brain tumours in children
Author Cancerbackup
Description Factsheet
Obtain from Online version available
Order from Cancerbackup
Brothers & Sisters
Author UKCCSG
Description Booklet
Obtain from Third Floor, Hearts of Oak House, 9 Princess Road West, Leicester LE1 6TH. Tel: 0116 249 4460. Email: ukccsg@le.ac.uk
URL http://www.ukccsg.org
Childhood Acute lymphoblastic leukaemia
Author Leukaemia Research Fund
Description Booklet
Obtain from Leukaemia Research Fund, 43 Great Ormond Street, London WC1N 3JJ
Tel: 020 7405 0101 Fax: 020 7242 1488
Childhood Acute myeloid leukaemia
Author Leukaemia Research Fund
Description Booklet
Obtain from Leukaemia Research Fund, 43 Great Ormond Street, London WC1N 3JJ
Tel: 020 7405 0101 Fax: 020 7242 1488
Choices
Author United Kingdom Children's Cancer Study Group [UKCCSG]
Description Booklet
Obtain from University of Leicester, 3rd Floor, Hearts of Oak House, 9 Princess Road, West Leicester LE1 6TH
Tel: 0116 2494485
Contact
Author United Kingdom Children's Cancer Study Group [UKCCSG]
Description Newsletter
Obtain from University of Leicester, 3rd Floor, Hearts of Oak House, 9 Princess Road, West Leicester LE1 6TH
Tel: 0116 2494485
Coping with childhood leukaemia
Author Leukaemia Research Fund
Description Booklet
Obtain from Leukaemia Research Fund, 43 Great Ormond Street, London WC1N 3JJ
Tel: 020 7405 0101 Fax: 020 7242 1488
Ewing's sarcoma in children
Author Cancerbackup
Description Factsheet
Obtain from Online version available
Order from Cancerbackup
Fighting Eye Cancer In Children
Author The Childhood Eye Cancer Trust
Description Leaflet
Obtain from The Royal London Hospital, Whitechapel Road, London E1 1BB. Tel: 020 7600 3309. Email: info@chect.org.uk
URL http://www.rbsociety.org.uk
Germ cell tumours in children
Author Cancerbackup
Description Factsheet
Obtain from Online version available
Order from Cancerbackup
Giving medicines to children
Author Wessex Cancer Trust
Description Booklet
Obtain from Wessex Cancer Trust, Bellis House, 11 Westwood Road, Southampton, Hampshire, SO17 1DL
Tel: 023 80672200 Fax: 023 80672266
Histiocytosis
Author Leukaemia Research Fund
Description Leaflet
Obtain from Leukaemia Research Fund, 43 Great Ormond Street, London WC1N 3JJ
Tel: 020 7405 0101 Fax: 020 7242 1488
Hodgkin lymphoma in children
Author Cancerbackup
Description Factsheet
Obtain from Online version available
Order from Cancerbackup
Langerhans cell histiocytosis (LCH) in children
Author Cancerbackup
Description Factsheet
Obtain from Online version available
Order from Cancerbackup
Leukaemia and related diseases
Author Leukaemia Research Fund
Description Booklet
Obtain from Leukaemia Research Fund, 43 Great Ormond Street, London WC1N 3JJ
Tel: 020 7405 0101 Fax: 020 7242 1488
Liver tumours in children
Author Cancerbackup
Description Factsheet
Obtain from Online version available
Order from Cancerbackup
Neuroblastoma in children
Author Cancerbackup
Description Factsheet
Obtain from Online version available
Order from Cancerbackup
Neuroblastoma: A booklet for parents
Author Neuroblastoma Society
Description Booklet
Obtain from Neuroblastoma Society, 18 Harlesden Road, St. Albans, Herts AL1 4LF
Tel: 01727 851818
Non Hodgkin lymphoma (NHL) in children
Author Cancerbackup
Description Factsheet
Obtain from Online version available
Order from Cancerbackup
Osteosarcoma in children
Author Cancerbackup
Description Factsheet
Obtain from Online version available
Order from Cancerbackup
Rare tumours of childhood
Author Cancerbackup
Description Factsheet
Obtain from Online version available
Order from Cancerbackup
Rebuilding shattered lives
Author Sargent Cancer Care for Children
Description Leaflet
Obtain from Sargent Cancer Care for Children
Tel: 020 8752 2800
Retinoblastoma in children
Author Cancerbackup
Description Factsheet
Obtain from Online version available
Order from Cancerbackup
The child with cancer in school
Author Wessex Cancer Trust
Description Booklet
Obtain from Wessex Cancer Trust, Bellis House, 11 Westwood Road, Southampton, Hampshire, SO17 1DL
Tel: 023 80672200 Fax: 023 80672266
Understanding retinoblastoma
Author Retinoblastoma Society
Description Booklet
Obtain from Academic Department of Paediatric Oncology, St Bartholomew's Hospital, West Smithfield, London EC1A 7BE
Tel: 020 700 3309 Fax: 020 7600 8579
We can make it! - Teenagers guide to beating cancer
Author Dutton, Susie et al
Description A leaflet for teenagers with cancer that describes treatments, side effects and general FAQ's.
Obtain from Wessex Cancer Trust, Bellis House, 11 Westwood Road, Southampton, Hampshire, SO17 1DL
Tel: 023 80672200 Fax: 023 80672266 Email: wct@avonlink.co.uk
Also available free online.
URL http://www.wessexcancer.org/support/teenager_cancer.htm
What's going on: a guide for teenagers with cancer
Author CanTeen Ireland
Description A booklet to provide information and support to teenagers with cancer. Each chapter deals with the different stages they will encounter, including treatment, being in hospital, getting on with life.
Date 1997
When someone in your family has cancer
Author National Cancer Institute
Description A leaflet written for young people with a parent or other family member who has cancer. Includes sections on the disease, its treatment, and emotional concerns.
Obtain from Also available online from the NCI Website:
URL http://www.cancer.gov/cancerinfo/when-someone-in-your-family
Wilms' tumour in children
Author Cancerbackup
Description Factsheet
Obtain from Online version available
Order from Cancerbackup
Your guide to radiotherapy
Author Wessex Cancer Trust
Description Booklet
Obtain from Wessex Cancer Trust, Bellis House, 11 Westwood Road, Southampton, Hampshire, SO17 1DL
Tel: 023 80672200 Fax: 023 80672266

Multimedia

The adventures of Captain Chemo
Author Royal Marsden NHS Trust
Description A website and computer game, aimed at cancer patients, relatives and friends, that explains the disease and its treatment.
URL http://www.royalmarsden.org/captchemo/

All resources in UK patient information guide have been reviewed by Cancerbackup specialist nurses and all details were correct at time of review.

Feedback about these resources or suggestions for inclusion are welcome - please contact us.


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