Caring for a child with a tumour

You may be reading this information because you are caring for a child with a brain tumour. Being a carer can be stressful and cause you much anxiety. Try to look after yourself – give yourself some time out and share your worries and concerns with somebody neutral such as a counsellor or your doctor.

Many cancer support groups and cancer education programs are open to carers, as well as people with cancer. Support groups and programs can offer valuable opportunities to share experiences and ways of coping.

Support services such as Home Help, Meals on Wheels or visiting nurses can help you in your caring role. There are also many groups and organisations that can provide you with information and support, such as Carers Australia, the national body representing carers in Australia. Carers Australia works with the Carers Associations in each of the states and territories. Phone 1800 242 636 or visit carersaustralia.com.au for more information and resources. BrainLink may also have helpful services for carers of people with brain diseases – visit brainlink.org.au.

You can also call Cancer Council 13 11 20 to find out more about carers’ services and get a copy of the Caring for Someone with Cancer booklet.

Learn more about:


Prognosis

The outcome for your child depends on the type of tumour they have, its location and grade, treatment, and other factors such as their overall health.

A significant number of children with a brain or spinal cord tumour will recover completely. In general, children who are diagnosed with a malignant tumour will have a better outlook than adults. Other children may have treatment that controls their tumour for many years.

Because a child’s nervous system is still developing, some children may develop a physical, behavioural or learning disability as a result of their tumour or treatment.

Talk to your child’s medical team about the treatment options, what to expect, and any concerns you have. You may also benefit from talking to a hospital social worker, who can provide practical and emotional support to your family.


Try to keep things normal

Keep as many things as possible consistent – This will be reassuring for many children. It is important to continue to show your love and support. It may help to keep rules and discipline as normal as possible. Although you may be tempted to relax the rules, this can lead to confusion over time.

Make time to talk to all your children – A tumour diagnosis can also be difficult for other children in the family. Their routines may also be disturbed and they may feel left out if parents and visitors show more attention to their sibling. Ask them how they’re coping and thank them for their patience and help.

Find a balance – If your teenager has been diagnosed with a tumour, it can be hard not to be protective at a time when they want to be independent. Talk about finding a balance between maintaining regular activities, going out with friends and staying at home.


Who can help?

Many hospital staff members specialise in working with children and young adults (paediatrics). Some hospitals employ staff, such as play therapists, music therapists or art therapists, who can help children cope with the challenges of treatment.

Rehabilitation will also be important for your child’s recovery. Organisations like CanTeen and Redkite offer practical and emotional support for families, young adults and children who are affected by cancer.


What should I tell my child?

It is natural to want to protect your child from the news of the diagnosis, but children are quick to listen, observe and learn. Doctor’s visits, tests, and absences from school or activities will let them know that something is different.

Talking openly about the tumour will help your child to be less anxious and to feel more in control. What you tell your child will depend on their age and knowledge. 

Newborns, infants and toddlers, 0–2 years

Children this young do not understand illness, but will react to being separated from you and changes in routine. They may not be able to talk about it, but they often pick up on physical and emotional changes. Toddlers like to have control over their environment.

  • Create a familiar environment that can travel with the child, such as their travel cot and favourite blanket, books and toys.
  • Be honest about hospital trips and explain tests that may hurt.
  • Give your toddler choices where possible e.g. “Would you like to wear the red or blue shirt to hospital?”
  • If they are in hospital for a period of time, put up some family photographs.

Preschool children, 3–5 years

Children in this age group are beginning to understand the difference between being well and being sick. They often believe their actions can make things happen.

  • Assure your child that their thoughts and behaviour have not caused the illness.
  • Be honest when talking about the tests and treatments that they need.
  • Reassure your child about your love and care for them.
  • Bring familiar toys and books to appointments and the hospital.

School-age children, 6–12 years

By this age some children know about cancer, but may not know its causes. They may fill in the gaps with their own theories. They can understand what cancer cells are.

  • Be open and truthful so they don’t assume their own interpretations are correct.
  • Tell the school about your child’s health and the reasons for any changes in their behaviour or attendance patterns.
  • If necessary, seek the support of the student welfare coordinator who may be able to organise extra tutoring and support.

Teenagers, 13–18 years

Many teenagers have an adult understanding of cancer and often want detailed information. They are starting to separate from the family. This is a vulnerable time, as they don’t want to appear different from their peers.

  • Provide resources so they can learn more about the diagnosis and treatment of tumours, and get valuable peer and adult support.
  • Talk to the school’s student welfare coordinator, who may be able to organise or provide extra tutoring or support.
  • Encourage teenagers to talk about their feelings but realise they may find it easier to confide in friends,teachers and other trusted people.
Read more about talking to children

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Instructions for downloading and reading EPUB files

Apple devices

The iBooks application must be installed on your Apple device before you can read the EPUB.
Different ways to download an EPUB file to your Apple device:

  • email EPUB files to yourself and transfer the attachment to iBooks.
  • copy EPUB files into DropBox (or a similar service) and use the DropBox app to send them to iBooks.
  • open EPUB files directly from Mobile Safari and open them in iBooks, where they are saved automatically by downloading the EPUB from the website.

Need more help? Visit: http://support.apple.com/kb/HT4059

Kobo

To download an EPUB file to your Kobo from a Windows computer:

  • download and save the EPUB directly onto your desktop.
  • connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
  • select “Open folder to view files” to view the contents of your Kobo.
  • navigate to where you have stored your EPUB file in “Finder”, in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.

To download an EPUB to your Kobo from a Mac:

  • download and save the EPUB directly onto your desktop.
  • connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
  • open your “Finder” application.
  • select “Kobo eReader” from the listed devices to view the contents of your Kobo.
  • navigate to where you have stored your EPUB file in “Finder”, probably in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.

Turn on your Kobo and your EPUB will be located in “eBooks”, while a PDF will be located in “Documents”.
Need more information? Visit: http://www.kobo.com/help/koboaura/response/?id=3784&type=3

Sony Reader

To download an EPUB file on your Sony Reader™:

  • ensure you have already installed the Reader™ Library for PC/Mac software
  • select the eBook you want from our website and click the link to download it.
  • connect the Reader™ to your computer.
  • open the Reader™ Library software and click “Library” in the left-hand pane and select the eBook to view it.

Need more help? Visit: https://au.readerstore.sony.com/apps_and_devices/

Amazon Kindle 2nd Generation devices

EPUB files can’t be read on the Amazon Kindle™. However, like most eReaders, Kindle™ 2nd Generation devices are able to display PDFs. We recommend that you download the PDF version of this booklet if you would like to read it on a Kindle™.
To transfer a PDF to your Kindle™ via USB cable from your computer or Mac:

  • download the PDF directly onto your computer.
  • connect the USB cable to your computer’s USB port, and the micro USB end of the cable to your Kindle™. Note: the Kindle™ won’t be available as a reading device while it is connected to your computer until it has been disconnected.
  • open the Kindle™ drive and several folders will appear inside. The “Documents” folder is where you will need to copy or drag the PDF to.
  • safely eject your Kindle™ from your computer and unplug the USB cable. Your content will appear on the Home Screen.

Kindle also provides a Kindle Personal Documents Service that allows users to send documents as an attachment directly to your eReader. For more information on this service, visit http://www.amazon.com/gp/help/customer/display.html/ref=help_search_1-1?ie=UTF8&nodeId=200767340&qid=1395967989&sr=1-1
For more information on accessing a PDF on your Kindle™, visit www.amazon.com/manageyourkindle, log in to your account and click on Personal Document Settings.
Need more help? Visit https://www.amazon.com/gp/help/customer/display.html?nodeId=200375630

Android and PC

You can also download and open eBooks on Android devices and PCs with appropriate apps or software installed. Suitable eReader apps for Android include Google Play Books, FBReader and Moon+ Reader. Suitable software for PCs include Calibre and Adobe Digital Editions.


Video: Talking About Brain Cancer

 

Instructions for downloading and reading EPUB files

Apple devices

The iBooks application must be installed on your Apple device before you can read the EPUB.
Different ways to download an EPUB file to your Apple device:

  • email EPUB files to yourself and transfer the attachment to iBooks.
  • copy EPUB files into DropBox (or a similar service) and use the DropBox app to send them to iBooks.
  • open EPUB files directly from Mobile Safari and open them in iBooks, where they are saved automatically by downloading the EPUB from the website.

Need more help? Visit: http://support.apple.com/kb/HT4059

Kobo

To download an EPUB file to your Kobo from a Windows computer:

  • download and save the EPUB directly onto your desktop.
  • connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
  • select “Open folder to view files” to view the contents of your Kobo.
  • navigate to where you have stored your EPUB file in “Finder”, in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.

To download an EPUB to your Kobo from a Mac:

  • download and save the EPUB directly onto your desktop.
  • connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
  • open your “Finder” application.
  • select “Kobo eReader” from the listed devices to view the contents of your Kobo.
  • navigate to where you have stored your EPUB file in “Finder”, probably in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.

Turn on your Kobo and your EPUB will be located in “eBooks”, while a PDF will be located in “Documents”.
Need more information? Visit: http://www.kobo.com/help/koboaura/response/?id=3784&type=3

Sony Reader

To download an EPUB file on your Sony Reader™:

  • ensure you have already installed the Reader™ Library for PC/Mac software
  • select the eBook you want from our website and click the link to download it.
  • connect the Reader™ to your computer.
  • open the Reader™ Library software and click “Library” in the left-hand pane and select the eBook to view it.

Need more help? Visit: https://au.readerstore.sony.com/apps_and_devices/

Amazon Kindle 2nd Generation devices

EPUB files can’t be read on the Amazon Kindle™. However, like most eReaders, Kindle™ 2nd Generation devices are able to display PDFs. We recommend that you download the PDF version of this booklet if you would like to read it on a Kindle™.
To transfer a PDF to your Kindle™ via USB cable from your computer or Mac:

  • download the PDF directly onto your computer.
  • connect the USB cable to your computer’s USB port, and the micro USB end of the cable to your Kindle™. Note: the Kindle™ won’t be available as a reading device while it is connected to your computer until it has been disconnected.
  • open the Kindle™ drive and several folders will appear inside. The “Documents” folder is where you will need to copy or drag the PDF to.
  • safely eject your Kindle™ from your computer and unplug the USB cable. Your content will appear on the Home Screen.

Kindle also provides a Kindle Personal Documents Service that allows users to send documents as an attachment directly to your eReader. For more information on this service, visit http://www.amazon.com/gp/help/customer/display.html/ref=help_search_1-1?ie=UTF8&nodeId=200767340&qid=1395967989&sr=1-1
For more information on accessing a PDF on your Kindle™, visit www.amazon.com/manageyourkindle, log in to your account and click on Personal Document Settings.
Need more help? Visit https://www.amazon.com/gp/help/customer/display.html?nodeId=200375630

Android and PC

You can also download and open eBooks on Android devices and PCs with appropriate apps or software installed. Suitable eReader apps for Android include Google Play Books, FBReader and Moon+ Reader. Suitable software for PCs include Calibre and Adobe Digital Editions.

Instructions for downloading and reading EPUB files

Apple devices

The iBooks application must be installed on your Apple device before you can read the EPUB.
Different ways to download an EPUB file to your Apple device:

  • email EPUB files to yourself and transfer the attachment to iBooks.
  • copy EPUB files into DropBox (or a similar service) and use the DropBox app to send them to iBooks.
  • open EPUB files directly from Mobile Safari and open them in iBooks, where they are saved automatically by downloading the EPUB from the website.

Need more help? Visit: http://support.apple.com/kb/HT4059

Kobo

To download an EPUB file to your Kobo from a Windows computer:

  • download and save the EPUB directly onto your desktop.
  • connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
  • select “Open folder to view files” to view the contents of your Kobo.
  • navigate to where you have stored your EPUB file in “Finder”, in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.

To download an EPUB to your Kobo from a Mac:

  • download and save the EPUB directly onto your desktop.
  • connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
  • open your “Finder” application.
  • select “Kobo eReader” from the listed devices to view the contents of your Kobo.
  • navigate to where you have stored your EPUB file in “Finder”, probably in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.

Turn on your Kobo and your EPUB will be located in “eBooks”, while a PDF will be located in “Documents”.
Need more information? Visit: http://www.kobo.com/help/koboaura/response/?id=3784&type=3

Sony Reader

To download an EPUB file on your Sony Reader™:

  • ensure you have already installed the Reader™ Library for PC/Mac software
  • select the eBook you want from our website and click the link to download it.
  • connect the Reader™ to your computer.
  • open the Reader™ Library software and click “Library” in the left-hand pane and select the eBook to view it.

Need more help? Visit: https://au.readerstore.sony.com/apps_and_devices/

Amazon Kindle 2nd Generation devices

EPUB files can’t be read on the Amazon Kindle™. However, like most eReaders, Kindle™ 2nd Generation devices are able to display PDFs. We recommend that you download the PDF version of this booklet if you would like to read it on a Kindle™.
To transfer a PDF to your Kindle™ via USB cable from your computer or Mac:

  • download the PDF directly onto your computer.
  • connect the USB cable to your computer’s USB port, and the micro USB end of the cable to your Kindle™. Note: the Kindle™ won’t be available as a reading device while it is connected to your computer until it has been disconnected.
  • open the Kindle™ drive and several folders will appear inside. The “Documents” folder is where you will need to copy or drag the PDF to.
  • safely eject your Kindle™ from your computer and unplug the USB cable. Your content will appear on the Home Screen.

Kindle also provides a Kindle Personal Documents Service that allows users to send documents as an attachment directly to your eReader. For more information on this service, visit http://www.amazon.com/gp/help/customer/display.html/ref=help_search_1-1?ie=UTF8&nodeId=200767340&qid=1395967989&sr=1-1
For more information on accessing a PDF on your Kindle™, visit www.amazon.com/manageyourkindle, log in to your account and click on Personal Document Settings.
Need more help? Visit https://www.amazon.com/gp/help/customer/display.html?nodeId=200375630

Android and PC

You can also download and open eBooks on Android devices and PCs with appropriate apps or software installed. Suitable eReader apps for Android include Google Play Books, FBReader and Moon+ Reader. Suitable software for PCs include Calibre and Adobe Digital Editions.


This information was last reviewed in May 2016
View who reviewed this content
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