Some Useful Books About Childhood Cancer.
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ORPHANS OF THE STORM

"Do not go where the path may lead, go instead where there is no path - and leave a trail."
~ Ralph Waldo Emerson ~
ORPHANS OF THE CANCER STORM
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Each entry on this page indicates the author, year of first publication, title and publisher.  Books are categorised into the subjects below.
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Many of the following books are available for purchase online at
www.amazon.com
Other sources may be indicated for specific books.
Books for Children
Books for Siblings
Educating Children With Cancer
For/by Childhood Cancer Survivors
General Cancer Resource Books

Castle F, (2000)
Cancer's a Word, not a Sentence, Hodder & Stoughton, London, UK.

Writen by Fiona Castle, whose popular showbiz husband Roy faught a very public battle against lung cancer, this is a great book focusing on the daily practiaclities of coping with cancer, as viewed by both patient and carer.  A very positive, snesitive and helpful read.

Speechley V, and Rosenfield M, (1996 - 2nd Ed),
Cancer Information At Your Fingertips, Class Publishing, London, UK.

An excellent general resource, laid out in Q&A format.  Covers diagnosis, treatment (including a host of complimentary therapies), coping and survivorship.

Whitehouse M, and Slevin M, (1996).
Cancer: The Facts. Oxford University Press, Oxford, UK.

This book gives a general overview of cancer  - with a good explanation about what cancer is and how it develops - and the different treatments used to fight it.
Childhood Cancer Books

Janes-Hodder H, Keene N, (2002, 2nd Ed),
Childhood Cancer: A parent's guide to solid tumor cancers, O'Rielly, Sebastopol, CA. USA.
Visit                                                             for more information.

This is an excellent comprehensive resource for parents, wiht valuable contributions from parents who speak from experience.  Contains sections on working with the doctors, surviving hospital, coping with treatment, family life, schooling, siblings, beyond treatment, and follow-up care.  Includes a detailed chapter on retinoblastoma.  Every parent should be given a copy of this book at diagnosis - highly recommended! 

Johnson F.L, O'Donnell M. et al, (1994),
Candlelighters Guide to Bone Marrow Transplants in Children, Candlelighters Childhood Cancer Foundation, Kensington, MD, USA.
Available free to parents from Candlelighters.

Though slightly dated, this is a superb resource for any family facing bone marrow transplant or stem cell rescue.  Containing contributions from over 30 authors, the book Includes sections on making the decision to go for transplant, in depth explanation of the different transplant types, nursing care, financial issues, schooling, family life, phychological wellbeing, and parent perspectives.  A very comprehensive and useful book.

Lozowski-Sullivan S, (1998),
Know Before You Go: The childhood cancer journey, Candlelighters Childhood Cancer Foundation, Kensington, MD, USA.
Available free to parents, from Candlelighters.

Writen primarily for the US reader, this is a
n invaluable practical guide for any family living with childhood cancer - from diagnosis to post-treatment care.  Covers subjects such as talking about diagnosis with children, family and friends, where to go for treatment, who's who in the hospital, travelling away from home for treatment, getting help, types of treatment, coping with being in hospital, moving beyond treatment, relapse, insurance and other financial issues.  Very easy to read and understand, with many great practical suggestions for families. 
Brain Tumour Books

Cullen P, Sansalone M, and Shiminski-Maher T, (2002, 2nd Ed),
Childhood Brain & Spinal Cord Tumors: A guide for families, friends and caregivers, O'Rielly, Sebastopol, CA. USA.
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A fluent, practocal manual for anyone involved in the care of children with brain or spinal cord tumors.  This book is enhanced by many coutributions for parents themselves. Contains an easy to understand guide to the brain and spinal cord, and covers a wide variety of sujects, including: types of tumour, individual chapters on treatment,  working with the doctors and surviving hospital, coping with treatment, family life, schooling, siblings, beyond treatment, and follow-up care.  Concludes with a comprehensive list of resource organisations.  An essential read for parents and carers. 

Roloff T. A, - Editor, (1995),
Navigating Through A Strange Land, Indigo Press, West Fork, AR, USA.

A collection of reflections from patients, family members and profissional care-givers.  These moving testamonies and essays provide a unique insight into the world of brain tumour treatment and survivorship, giving hope to those who are just beginning the journey, and refreshed encouragement to those who have already been travelling for some time.

Sheldon J, (2001), One Step at a Time: A Story of Endurance and Perseverance, Hodder & Stoughton, London, UK.

Written by the mother of Georgie Sheldon, One Step At A Time is the story of a young girl's battle to overcome a malignant brain tumour and, later, chronic fatigue syndrome.  The book tells of the impact childhood cancer has on the entire family, and of the Sheldons' personal faith and determination to survive.  An excellent book.
Retinoblastoma Books

Higgins-Brunner S, (1996),
Perfect Vision: A mother's experience with childhood cancer, Research Triangle Publishing, Fuquay-Varina, NC. USA.

A mother's extremely moving account of daughter Kari's journey through bilateral retinoblastoma and subsequent orbital bone cancer, which eventaully claimed her life at the tender age of 11.  This is a difficult read, but Kari's story is beufitully told, and her happy, charming character dances across each page. Although Kari did not live to tell her own story, this telling of her experience serves as a reminder that hope exists right until the very last moment, and the life with childhood cancer can stil be very beautiful and full of joy.
Books For Children

Amos J, Green G, (2002),
Separations: Hospital, Cherrytree Press, Slough, UK.

Stories and letters are interspersed with helpful explanations and practical advice to help children understand and cope with the experience of being in hospital.  Colour pictures and photographs compliment the book.

Barr R, Cranston L, LeBlanc C, Restivo M, (2001) 
You and Your Cancer: A child's guide. BC Decker, Hamilton ON, Canada.

An excellent book for older children.  Marcus, Heather and Tommy all have cancer, and they guide the reader through their experiences.  Plenty of questions are answered, and there are activities such as a word search, maze, colouring in, and spaces for children to personalise sections with their own thoughts and experiences. 

Braithwaite A, Spoor N, (1989),
I Have Cancer, Dinosaur Publications, London, UK.

A simple, engaging book for young children.  Ben tells of his leukaemia, from tests and diagnosis through treatment, and on to recovery and his return to school.

Clarke A, Grimshaw C, (1998),
Humpty Dumpty Faces The Future, Changing Faces, London, UK.
Contact                                                    for more information.

Humpty Dumpty's face was badly scarred when he fell off the wall, causing him to lack confidence in the world around him.  However, his fairy Godmother is at hand with some great practiacl advice, helping Humpty to face the future with a happier air.  This charming little story is told in poetry, with vibrant pictures throughout.

Clarke A, Aylett K, (1998),
Show Time, Changing Faces, London, UK.
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Emma looks different from her friends, but at her school's show-and-tell time, she receives a positive response from classmates, after confidently shares her story with them.  This story is told from the perspective of of a classmate, and the setting is one all primary school children will identify with.  The pictures are bright and colourful. 

Crowe C, Bendell N,
Me And My Marrow: A kid's guide to bone marrow transplants. Fujisawa Healthcare, Deerfield IL, USA.
Contact                                                      for more information.

The brainchild of a young transplant survivor, this is a superb resource for older children.  Easy to understand text and fun graphics take the reader through the transplant process, from start to completion and beyond, offering helpful hints and tips to ease the experience.  Comments from survivors are woven throughout the pages, and fun illustrations bring the book to life.

Dempsey S, Collins G, (2003),
My Brain Tumour Adventures, Jessica Kingsley, London, UK.

The author tells how her son, Owen, used his imagination to cope with treatment for an ependymoma brain tumour.  Told for younger children, Owen's experience demonstrates how youngsters can use story-telling to help them feel more comfortable during difficult times.

Chernus-Mansfield N, Horn M, Chernus K, (1991),
My Fake Eye: The story of my prosthesis. Institute for Families of Blind Children, Los Angeles, CA, USA.
Contact                                                     or                                  for more information.

Colour photographs and simple text explain how Brian and Zachary had  enucleation (eye-removal) surgery to treat retinoblastoma, and later received new artificial eyes from their ocularist.  An excellent book for all children.


NAES,
My Pretend Eye. National Artificial Eye Service, Blackpool, UK.
This book is also available from the UK Childhood Eye Cancer Trust.

A simple booklet for children, explaining the process of visiting an ocular prosthetist to be fitted for a new artificial eye. 

Palmer S, (1994),
Fighting The Big 'C'. CLIC (Cancer & Leukaemia In Childhood), Bristol, UK.

A good book for older children and teenagers, detailing many aspects of cancer and leukaemia.  Contains useful advice, hints and tips, using clear, concise language and simple line drawings. 

Trillin A, Koren E, (1996),
Dear Bruno. The New Press, New York NY, USA.

A wonderful, ingeniously simple book, borne out of a letter from the author to a boy receiving treatment for cancer.  In the letter, she tells of her own experience of lung cancer, sharing her feelings about the process of being cured, and offering sensible advice to her young friend.  Fun illustrations reflect the gentle humour and no-nonsense practical approach of the letter.  Superb.
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Books For Siblings

The following two books are available free of charge to families from CLIC (Cancer and Leukaemia In Childhood) in the UK.  They are also accessible online in PDF format via the UKCCSG website at


Ballard K (2004), My Brother Has Cancer, UKCCSG.

Produced in association with the Birmingham Children's Hospital Sibling Group and UKCCSG Sibling Project Group, and funded by Macmillan Cancer Relief.  This is a storybook for children aged 4-9, telling the experience of a boy and girl whose little brother has cancer.  The book contains sections for children to fill in and tell their own story.


Ballard K (2004),
When Your Brother Or Sister Gets Cancer, UKCCSG

Produced in association with the Birmingham Children's Hospital Sibling Group and UKCCSG Sibling Project Group, and funded by Macmillan Cancer Relief.  Colour photograph, fun graphics and bold fact boxes combine with clear, accessible text to make this a quality information and support resource for older children who have a brother or sister with cancer.
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Books About Educating Children With Cancer.

Deasy-Spinetta P - Editor, (2004),
Educating the Child with Cancer, A Guide for Parents and Teachers. Candlelighters Childhood Cancer Foundation, Kensington MD, USA.
Available free to parents and teachers, from Candlelighters.


A must-have resource for all parents and educatora of children with cancer and those who have survived it.  Containing contributions from nearly forty professionals and parents, this book encourages open communication and a development of understanding between parents, teachers and the child's medical team, to enable the provision of an integrated approach to education.  Subjects covered include: school and the Child with Cancer, communication, cognitive late effects of treatment, the law  and the child's rights, and supporting siblings.  The authors recognise that a solid education promotes confidence and lays the foundation stones of a "productive and rewarding life". 
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Books For/by Survivors

Keene N, Hobbie W, Ruccione K, (2000), Childhood Cancer Survivors: A practical guide to your future. O'Rielly, Sebastopol, CA. USA.
Visit                                                             for more information.

An indispensible guide for survivors of childhood cancer. Packed with useful advice on everything from follow-up care, staying healthy and second cancers to education, employment, insurance and relationships. Contributions from parents and survivors are laced throughout the text, and the book concludes with an extensive list of informaiton/support resources.  A must-read for all survivors.

Shaw J, (2004),
Beyond The Red Door, Allen and Unwin, Crows Nest NSW, Australia.

Written by Australian paralympic cycling medalist Janet Shaw, this books tells the inspiring and encouraging story of a young woman's journey to self discovery and peace following adoption at birth and treatment for bilateral retinoblastoma, which claimed her vision and instilled in her a life-long determination to beat the odds.
General Cancer Resource Books
Childhood Cancer Books
Brain Tumour Books
Retinoblastaoma Books
www.childhoodcancerguides.org
www.childhoodcancerguides.org
www.childhoodcancerguides.org
www.changingfaces.co.uk/
www.changingfaces.co.uk/
www.meandmymarrow.com
www.instituteforfamilies.org
www.chect.org.uk
www.candlelighters.org
www.candlelighters.org
www.clic.org.uk
www.ukccsg.org/public/resources/
www.clic.org.uk
www.candlelighters.org