GUIDEBOOKS, HANDBOOKS AND STORYBOOKS
This list is by no means complete. We have included key materials here which may be useful to parents, families, caregivers, kids with cancer and survivors. Some of these materials are available as a PDF and can be downloaded, others have to be purchased or requested from the publishers/developers.
If you would like to suggest other materials, which you feel should be included, do please send us the link, or the title and source. Presently, we only have materials in English. If you are searching for your specific language, we suggest you look into the websites of CCI member organizations in your country (or of CCI member organizations that speak the same language).
Handbooks/Guidebooks for parents and families of children/adolescents with cancer
Children’s Oncology Group Family Handbook
by childrens oncology group
The Children’s Oncology Group Family Handbook 2nd Edition, provides families with reliable information about treatment, support, and follow-up care for children and young people with cancer. *Also available in French and Spanish.
ADOLESCENTS AND YOUNG ADULTS WITH CANCER:
Battles – Failures – Achievements – Love/ ADOLESCENTES Y JÓVENES CON CÁNCER: Luchas – Fracasos – Éxitos – Amor
by Rosalía Lorenzo González
It is a readable book that goes in depth into the young people’s world to see everything that turns around them. You will know closely this disease through well-documented texts of medical professionals and through testimonies of cancer patients, survivors, parents, siblings, friends and partners. This book deals with topics not addressed before, like the ethical aspects which must be taken into account when talking to adolescents or young people about their diagnosis, fertility, sexuality, etc.
(Only in spanish)
by Comfort First Team (Children`s Cancer
Centre at the Royal Children’s Hospital in Melbourne)
The aim of the Comfort First Program (CFP) is to promote coping skills and good procedural outcomes for children and families (for example early procedural pain management intervention to reduce procedural pain and distress).
Clinical Practice Guideline for Pain Management in Children with Cancer
by Fundación Cris Contra el Cáncer;
Colaboradora: Federación Española de padres de Niños con Cáncer, 2013
This Clinical Practice Guideline for Pain Management in Children with Cancer aims to have up to date information on the outcome of scientific research for all those who are involved in the direct care of children with cancer (nurses, psychologists, carers, oncologists, paediatricians, etc.). The centre of attention is to alleviate pain in children with cancer. Therefore, improving the quality of life and reducing suffering, as well as lessening the anxiety of carers and families.
Emotional Aspects of Childhood Blood Cancers – A handbook for parents
by The Leukemia & Lymphoma Society (USA)
This book is written for parents of young children and adolescents with leukemia or lymphoma who are trying to cope with a most difficult situation. It is for parents who seek support to face and deal with the illness.
Sibling Grief – Healing After the Death of a Sister or Brother
by P. Gill White
It was influenced by the personal experience of the author and is a very comprehensive handbook for grieving siblings as well as their caregivers with a lot of practical advice (for both the grieving sibling as well as their caregivers) and a long book list for further reading.
Picturebooks/Storybooks for younger children
The Together Stories Book Set
Transitioning through cancer treatment phases and coming off treatment are well recognised as potentially stressful and difficult times for children and families. This series of story books has been written to assist young children adapt to the physical and psychological changes associated with cancer treatment. The books present a creative way in which parents can help their child’s adjustments and potentially find their own voice and stories to tell.
The set of eight books, written by Trish Dearn, is available for purchase through the Children’s Cancer Foundation’s website http://childrenscancerfoundation.com.au/get-involved/buy-books
The story of the little „Chemo-Casper” who helps to fight cancer originated in Denmark and made its way via ICCCPO-contacts through many countries. It is meanwhile translated into more than 10 languages and can be downloaded as a PDF here. If you want to publish the brochure in your language, please contact the ICCCPO Head office for permission and details: firstname.lastname@example.org
The story of the „Radio-Robby” helps to explain what radiotherapy does. The story originated in the Netherlands and made its way via ICCCPO-contacts into many countries. It is meanwhile translated into several languages and can be downloaded as a PDF here. If you want to publish the brochure in your language, please contact the ICCCPO Head Office for permission and details:email@example.com
La leucémie de l’entfant en mots et en images
This is a wonderful and informative booklet for children with leukaemia, which was published and presented by Prof. Fouzia Msefer Alaoui (head of the pediatric haematology/oncology unit in Rabat, Morocco). It is an illustrated booklet in French and Arabic.
“Katie’s Garden” is a picture book for children with a tumor. It explains children the disease and its treatment as well as some of the procedures in colourful pictures and easy to understand text. The book was produced by the Wilms@Home-group (www.wilmsathome.org.uk) with illustrations by Ruth Claydon and text by Talitha Claydon.
Joanne Poon (Singapore) is the mother of a child treated for Burkitt’s Lymphoma. She recently published an illustrated children’s book in English, Brave Maeve, which she wrote to explain to her then 3 year old daughter the journey through cancer treatment. She would like to make this book available to paediatric hospitals and cancer foundations around the world (free of costs). Feel free to contact Joanne Poon for a copy at:firstname.lastname@example.org
or facebook bravemaevesingapore
Personal reports by Parents
edited by Ximena Garcia Blanco. Publication supported by “Fundación Nuestros Hijos” and Red Salud UC – Faculty de Medicina, Santiago de Chile.
Eight mothers are sharing their memories about the illness and death of their children. It is a sad, yet very comforting book, illustrated with pictures of each family which guides the reader to “find support .. .and joy in the small details that previously we did not see, like a sunbeam coming through the window, a breeze that moves the leaves of a tree or a smile from our son or daughter.” (p.9)
Ya Can’t Let Cancer Ruin Your Day – The James Emails
by Syd Birrell
Four year old James is diagnosed with a neuroblastoma (stage IV). Knowing that the chances for long time survival with this kind of disease are very low, the family does whatever possible to enjoy life together.
In its pages, you will find stories and photos showing what hope looks like from the many vantage points of families who have been affected by childhood cancer. The families who have contributed to this volume have chosen to include themselves to honour their children and their inspiring stories; on every page, the families included here want to show others that, no matter what, they are smiling, hopeful, loving, and persevering.
The book can be purchased through the OPACC website at:www.opacc.org
Personal reports by Patients
by Melinda Marchiano
Melinda is only 13 years old when she is diagnosed with cancer (Hodkin’s disease). While under treatment she starts to write. This is her story of courage, hope, and grace.
Book of hope
This booklet has been produced to celebrate the fifteen anniversary of the founding of ICCCPO in 1994 – the “Book of Hope”.
The stories in this booklet are wonderful examples of courage, faith and gratitude. They are telling us in ever so different words and ways about the patients’ experiences, the struggle to overcome their disease and master the time after. These young people are grateful for being given a “second chance” and thank all those who helped them along the way: the doctors, the nurses, their families and friends. They are representing what ICCCPO is striving for.
American Childhood Cancer Organization online library
ACCO, a CCI member in the USA, offers the following:
BOOKS FOR PARENTS
- Along the Way
- A Parent’s Guide to Clinical Trials
- Understanding the Journey: A Parent’s Guide to DIPG
- Parent’s Guide Enhancing Quality of Life in Children with Cancer
- Educating the Child with Cancer