Dealing with childhood (paediatric) cancer

What is childhood cancer?

If your child has been diagnosed with cancer, there will be physical, emotional and practical challenges ahead. You may have a lot of different feelings. But there is lots of support and information out there to help both you and your family.

Every year, more than 700 children under 14 years are diagnosed with cancer in Australia. Almost half of childhood cancers are diagnosed in children aged between 0 and 4 years. The most common childhood cancers are:

• leukaemia
• lymphoma
• brain cancer

However, parents today have more reason to be hopeful than ever before. Years ago, most children did not survive cancer. But now more than 8 in 10 children survive. This has been due to improvements in treatment for:

• leukaemia
• lymphoma
• neuroblastomas
• malignant bone tumour

The outlook for your child depends on what sort of cancer they have and the cancer stage at diagnosis.

My child has just been diagnosed with cancer

It can be overwhelming to discover your child has cancer. You might feel:

• shocked
• angry
• sad
• guilty

The diagnosis can affect everyone around your child, including their teachers, friends and extended family. Remember, you are not alone.

How do I tell my child they have cancer?

Telling your child that they have cancer isn’t easy. It’s best to keep your initial explanation very simple. If your child wants more information they will ask. Your child’s treating team will be able to help you with these talks.

Not telling your child about a cancer diagnosis can make things worse. It may make them anxious because they will probably sense something is wrong. It’s better for them to discuss it with you than to find out from someone else.

How much information you share with your child and other children in the family will depend on their age and emotional development. Just be as open and honest as you can.

Encourage your child to ask questions and talk about their feelings.

The Cancer Council’s book Talking to kids about cancer explains how to discuss cancer with your children.

Diagnosis and treatment

Cancer diagnosis and treatment involves a lot of tests and procedures in hospital. Some of these can be painful or can make your child feel very unwell. It’s a challenging time for you as well as the child.

The health professionals will work with you to look after your child. They are very experienced in using play and other techniques to make it more comfortable for children.

ASK YOUR DOCTOR — Preparing for an appointment? Use the Question Builder for general tips on what to ask your GP or specialist.

Try to involve your child in talking about their care if you can.

Although treatments are complex and disruptive, most children will be cured. Try to maintain a sense of a positive future by keeping them engaged with friends and family.

Your role is very important. It’s your job to reassure your child, give them cuddles and distract them.

For more information on helping your child cope with tests and procedures, you can visit the Royal Children’s Hospital Melbourne website.

How do I help my child cope?

Many parents cope by focusing on their child and what must be done to make them well. The calmer, more reassuring and loving you are, the better your child will be able to cope.

It’s a good idea to find out as much as you can about your child’s cancer and the treatment options. Your doctor can help you do this.

Sticking to your normal routines and boundaries and giving your child lots of love are the best ways to help them cope. Whenever it’s possible, let them play, go to childcare and be with other children. The doctors and nurses looking after your child will tell you what’s safe.

Young children with cancer are often upset to be away from their parents and siblings. They may also be confused and unhappy about not being able to play as normal.

They may be more clingy, and cry or scream more than usual, or become uncooperative during medical tests and treatment. You may also notice changes to their sleeping patterns and toileting. Some may ‘regress’, meaning they act as though they are younger than they are. They might stop doing things they knew how to do before. Or they may become withdrawn and not want to play as much.

Many hospitals provide education and activities for children with cancer. They may also have an educational psychologist and counsellor to help them during their time in hospital.

How do I support my other children?

Other children might be frightened and upset about their sibling’s cancer. The way they respond will depend on their age.

They might also feel left out and jealous if you’re spending a lot of time away from them to look after your child with cancer. Their behaviour might change and if they’re at school their marks might drop.

It can help to be open and honest and give them as much information as possible. It’s important to explain to them that you can’t ‘catch’ cancer. But if they don’t like going to the hospital, don’t force them.

Trying to stick to normal family routines and activities and talking to their school or childcare will also help.

Siblings Australia provides information and support for those siblings of a child with an illness who are aged between 8 and 12 years.

How do I look after myself?

There will be plenty of support available from the staff at the hospital. You may also have family and friends who want to help as well.

Let them know what you need help with. Some things you could ask for help with are:

• washing
• shopping
• cooking
• cleaning

You might find it exhausting to repeat information to different people. You may decide to provide updates through:

• a private social media group
• email
• a blog post

This is something you may want to ask for help with.

Having a child with cancer can put a strain on the whole family. It’s a good idea to stick to your normal family life as much as possible and to take time out for yourself.

Where can I find support?

There is plenty of support for parents of children with cancer. A good first step is to call the Cancer Council on 131120 and talk with a trained professional.

Support for you

Cancer Australia has more information for parents about living with childhood cancer.

Canteen’s and Camp Quality’s online community Parenting through cancer provides free expert advice, counselling and a chance to connect with other parents in similar situations.

Camp Quality's New Normal Navigator app provides support to mums, dads and carers.

Many parents find it helpful to join a support group, either face to face or online. For more information visit Cancer Connect.

Kids Helpline also provides support for parents and carers. They can be called on 1800 55 1800.

If you are in crisis, call Lifeline on 13 11 14, which is available 24 hours a day, every day of the year.

You can also call Pregnancy, Birth and Baby on 1800 882 436 for information and support.

Support for your child

If your child is over 5 years of age, they can get support from Kids Helpline on 1800 55 1800.

Camp Quality's Kids’ Guide to Cancer app provides age-appropriate cancer education for kids up to 15 years old.

Financial support

A cancer diagnosis will affect all aspects of your life. There are services available to help you financially. For example, you might be eligible for subsidised travel and accommodation if you need to travel for treatment. The Ronald McDonald House Charities provide accommodation near treatment centres.

The Cancer Council has some great resources.

You can also ask to talk to the social worker at your hospital.