Family | Patient hub
Our useful information page contains resources in the form of fact sheets, videos, online books and other types of content that you can use to increase your understanding about your child's medical condition and treatment. Other information is included to help you connect with resources that may be of use, depending on your individual circumstances.
The resources can provide a starting point for further questions you might like to ask your child's doctor, nurse or staff in the Cancer Centre for Children. They are intended to be for educational purposes only so please consult a qualified health professional to make sure this information is suitable for your child.
Children's Oncology Group Family Handbook
The Children's Oncology Group (COG) Family Handbook includes information on cancer, tests and procedures, clinical trials, treatment and effects, coping, and more, to review and discuss with your child's qualified medical professional.
For more information about the handbook and instructions for Apple iBook, Amazon Kindle and other E-Reader editions visit the COG website.
Choose the handbook in your preferred language, above, to download or view online. Translations are for informational purposes only and are published pursuant to the COG Family Handbook Translation Policy. Find out more here.
Children's Oncology Group New Diagnosis Guide
The Family Handbook New Diagnosis Guide, by the Children's Oncology Group, is for patients and families learning about a new cancer diagnosis.
PICS childhood cancer diagnosis and treatment handbooks
The Victorian Paediatric Integrated Cancer Service (PICS) has produced a two part Childhood Cancer Series.
Diagnosis and Treatment is the first booklet in this series and provides information on diagnosis, treatment, looking after your child during treatment, looking after you and your family, and more, to use as a practical guide.
The Information Book: Life After Diagnosis is the second booklet and contains information on childhood cancers, tests and available treatments, caring for your child and family, and staff and services. Guidelines for Victorian hospitals are given with some transferable information that you may find useful.
APHON drug information sheets
APHON Hematology/Oncology Medication Fact Sheets contain information on medicines, how they work, how they are given and potential side effects. The material is offered as useful information for you to discuss with your qualified medical professional.
Tube feeding (including nasogastric tubes)
When illness and treatment affect a patient's ability to eat, a feeding tube is inserted to help meet nutritional needs.
An NG tube is a very thin and flexible tube that carries food and medicine through the nose and into the stomach. Find out how three families made decisions about tube feeding in this video by the Boston Children's Hospital and Dana-Farber Cancer Institute or read more here.
See the NG tube video in English
See the NG tube video in Arabic
Tube Feeding information with illustrations from the Victorian Paediatric Integrated Cancer Service (PICS):
Select a tube feeding fact sheet below to access pdf and online versions from The Children's Hospital at Westmead:
- What is tube feeding?
- Your child's tube feeding formula
- Looking after your child's feeding equipment
- Caring for your child's nasogastric tube
- Gastronomy
- Your child's new gastronomy button
- Common problems with your child's gastronomy button
- Common tolerance problems your child may experience while tube feeding
- The importance of a clean mouth
- Trans-gastric Jejunal feeding device
- Transitioning from tube to oral feeding
Books on tube feeding for children aged 2-5
Angus Olsen is a popular author and illustrator producing books for young children aged 2-5 to help them understand cancer and procedures. Read I need an NG tube and I need a PEG Tube for free online or download them as a pdf. See other books he has written for young children about cancer at his I Draw Childhood Cancer website.
The Cancer Centre for Children information sheets
Camperdown ward
Camperdown Ward cares for children with cancer who are inpatients in the Cancer Centre for Children. Download this seven page pdf, or read it online, for information about the ward, meals, visiting, facilities, seeing the doctor, and other aspects of your child's stay.
Our digital communication
Website icon for phones
You can download the Cancer Centre for Children website icon to your phone for quick access to information and our latest news and events. An iPhone instruction sheet has been provided here, and you can refer to your phone's manual for android options.
Newsletter
To receive the Cancer Centre for Children's newsletter in your inbox each month just put your name and email in the subscription form on the home page of our website and join our list, or give your details to the reception desk in the Oncology Treatment Clinic, or send an email to jennifer.grinham@health.nsw.gov.au.
Videos
Acute Lymphoblastic Leukaemia (ALL)
Rebecca Jackson explains acute lymphoblastic leukaemia in an accessible way to help children understand.
Books for children about cancer and procedures
Wondero books
Wondero books help children to understand and cope with medical procedures that they experience as part of their treatment. They were developed by staff in the Cancer Centre for Children and young patients are given the book when undergoing certain treatments or if they ask. Find out more.
Redkite's Book Club
Redkite’s Book Club has over 80 books about cancer, on various topics for different age groups, that patients and families at The Children’s Hospital at Westmead can borrow for free and keep as long as they like. Find out more.
Books by Angus Olsen
Visit Angus Olsen's website to see books on a wide variety of topics including cancer, medical procedures and social distancing aimed at 2-5 year olds. You can read them online or download them as a pdf free of charge, or buy them from bookshops. Find out more.
When You Stay in Hospital
Music Therapist in the Cancer Centre for Children, Miriam Cromie, wrote the book When you Stay in Hospital to help children cope with procedures better through a dose of musical fun. Read it online, or download it, free of charge.
Psychosocial and mental health links
These community resources all provide phone and online support and counselling.
For children and teenagers
Canteen: If you are 12 to 25 and dealing with your own or a close family member’s cancer, check times for counselling here. Face to face sessions are also available.
Redkite: If you are under 18 years of age and diagnosed with cancer you can call Redkite on 1800 Redkite (1800 733 548) Monday to Friday, 9.00am to 7.00pm.
Headspace: If you are 12 to 25 Headspace will assist you and your family and friends. Face to face sessions are also available.
Kids Helpline: If you are aged 5 to 25 you can speak to a Kids Helpline counsellor 24 hours a day, 7 days a week by phoning 1800 55 1800.
ReachOut: You can call ReachOut which has phone numbers for all age groups here for urgent help 24 hours a day, 7 days a week as well as using discussions and tools.
Youth Beyond Blue: If you’re aged 12 to 25, or a parent needing support, you can get urgent help here. There is also assistance for hearing and speech impediments and free translation support.
For parents and adults
Redkite: If you are a family member or friend of a child diagnosed with cancer aged from 0 to 18 you can call Redkite on 1800 Redkite (1800 733 548) Monday to Friday, 9.00am to 7.00pm.
Parent Line: If you’re a parent or carer in NSW with children aged 0 to 18, Parent Line provides counselling and support.
Beyond Blue: Information and support is provided to all ages from Beyond Blue for anxiety and depression. There is also assistance for hearing and speech impediments and free translation support.
Lifeline: If you are experiencing emotional distress you can call Lifeline 24 hours a day, 7 days a week by phoning 13 11 14 or use chat or text resources.
ReachOut: You can call ReachOut which has phone numbers for all age groups here for urgent help 24 hours a day, 7 days a week as well as using discussions and tools.
Charities for children with cancer
Ronald McDonald House Australia
Ronald McDonald House Westmead
Starlight Children's Foundation
Australian website Links
Australian & New Zealand Childrens Haematology/Oncology Group (ANZCHOG)
Australian Cancer Survivorship Centre (Peter MacCallum Cancer Centre)
The Children's Hospital at Westmead
The Sydney Children's Hospital Network
International website links
NIH National Cancer Institute (USA)
NIH National Clinical Trials Network (USA)
Page update log
Updated 1 September 2020