Key points to remember

This page is part of a whole section about childhood cancer [1].

• going home for the first time after diagnosis can be an especially stressful time
• help is available from support groups and the nursing and medical staff at your local and tertiary hospitals

Where is help available after going home?

When your child is getting ready to go home from hospital, feelings of excitement can be mixed with feelings of anxiety for everyone in the family. Going home for the first time after diagnosis can be an especially stressful time because the situation is new.

After your child goes home, help is available from support groups like the Child Cancer Foundation and the nursing and medical staff at your local and tertiary hospitals. Check out the links for more information and support [2].

Check out the links for more information and support [2].

Where will my child receive continuing care?

If your family lives in the tertiary treatment centre area, the healthcare team where your child was a patient will continue providing your child's continuing care.

If your family does not live in the tertiary treatment centre area, the local hospital staff and the healthcare team at the tertiary centre will share your child's continuing care.

Before going home

'Discharge meeting'

See Checklist before leaving hospital [3].

Write down any questions from anyone in the family. Ask for a 'discharge meeting', especially if you are going home for the first time. Take your questions to the meeting and ask the healthcare team to discuss them. Consider having more than one whānau/family member go to this meeting.

Go through the pre-discharge checklist with your child's nurse. Make sure to talk to the nurse or your child's doctor if there is anything you need more information about. 

Keep a record of important contacts

Check the page Important contacts for your child with cancer [4]. You might want to print it and then fill it out with the names and phone numbers you need.

Find out about how to safely handle cytotoxic medicines

If your child is to be taking chemotherapy medicine at home, or has had chemotherapy within the 48 hours before leaving hospital, see the advice about how to safely handle cytotoxic medicines and the related wastes.

See our section on Childhood cancer and education [5].

Find out what your child can do

Speak to your child's doctor about the physical activities your child should avoid and the activities that are safe.

After going home

After leaving hospital, you can get advice and reassurance by phoning the doctor or nurse at the hospital whenever there is any worry or concern.

Phone the doctor or nurse at your hospital for advice if your child is receiving chemotherapy and has any of the things listed in the section below. 

When should I seek medical advice?

You always need medical advice and your child may need medical attention if your child is having chemotherapy and any of these things happen:

• your child has a temperature over 38 degrees Celsius
• there is bleeding from the nose, gums and/or mouth or unexplained bruising or blood in your child's poo, wee or vomit
• there has been close contact with a person who has chickenpox, shingles or measles
• your child has difficulty eating or drinking
• your child has difficulty doing wee or has not had a wee for 6 hours
• your child has been unable to poo for 3 days
• your child has had vomiting or diarrhoea for more than 6 hours
• your child has a skin rash

Chemotherapy safety at home

Chemotherapy by mouth

Some children will continue taking chemotherapy medicine by mouth (either tablets or liquid) when they are at home.

Chemotherapy into a vein

Some children, when they are at home, will go to the hospital day stay area or outpatient clinic to have chemotherapy into a vein (intravenous). Then they return home straight after.

Protecting yourselves when handling chemotherapy medicine

Because chemotherapy medicines are toxic, when you are home you need to protect yourself and others when you are handling or exposed to them. Chemotherapy medicines pass out of the body in wee, vomit, poo and blood. Anyone who could be exposed to these body substances also need protection from possible contamination. This applies during treatment and for up to 48 hours after finishing treatment.

You will receive advice from your treatment centre about safely handling chemotherapy medicines and related waste at home.

See Frequently asked questions about care for your child with cancer at home [6].

Tips for giving medicine

You could use rewards such as star charts and bravery beads to encourage your child to take medicine if it is unpleasant.

Try using an oral syringe to make it easier to measure the medicine.

If your child vomits within 30 minutes of taking a medicine, phone the doctor or nurse at the hospital for advice about repeating the dose.

Look for tips for giving specific medicines on your medicine information sheets. Phone the ward at your hospital and ask to speak with your doctor or pharmacist to discuss any problems.