Going home from hospital after your child's cancer treatment

Going home from hospital after your child's cancer treatment

When a 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 discharge, help is available.

Where is help available after discharge?

When a 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 discharge, help is available from:

Where will my child receive ongoing care?

If your family lives in the tertiary treatment centre area, your child's ongoing care will continue to be provided by the healthcare team where your child was a patient.

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

Before discharge

  • 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 to have them discussed. Consider having more than one family member attend the meeting
  • print the page Important contacts for your child with cancer and then fill it out with the names and phone numbers you need
  • go through the pre-discharge check list with your child's nurse
  • if your child is to be taking chemotherapy medicine at home, or has had chemotherapy within the 48 hours before discharge, see the advice about how to safely handle cytotoxic medicines and the related wastes
  • speak to your child's doctor about the physical activities your child should avoid and the activities that are safe. Then complete the activities

After discharge

After discharge, 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 When should I seek medical advice? You can find phone numbers for the hospital, and the doctor and nurse on the ward if you have printed and filled out the page Important contacts for your child with cancer.

When should I seek medical advice?

Medical advice is always required and medical attention may be needed if a child is having chemotherapy and any of these things occur:

  • 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 bowel motion, urine 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 passing urine or has not passed urine for six hours
  • your child has been unable to have a bowel motion for three days
  • your child has had vomiting or diarrhoea for more than six hours
  • your child has a skin rash

Chemotherapy safety at home

Some children will continue taking oral chemotherapy medicine (either tablets or suspension), when they are at home. Some children, when they are at home, will go to the hospital day stay area or outpatient clinic to receive intravenous chemotherapy and then return home straight afterwards.

Because chemotherapy medicines are toxic, people in the home who are handling them or who may be exposed to them, need to be protected from possible contamination. Chemotherapy medicines are passed out of the body in the urine, vomit, faeces and blood and peoples who could be exposed to these body substances also need to be protected 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. You could record the following information in your folder:

  • advice about the safe handling of cytotoxic medicines in your home
  • advice about the safe handling of related waste in your home

Tips for giving medicine

Rewards such as star charts and bravery beads may be a useful incentive if the medicine is unpleasant. Try using an oral syringe if a medicine measure is proving difficult. 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 and phone the ward at your hospital and ask to speak with your doctor or pharmacist to discuss any problems.

Frequently asked questions about care at home

What to do about:

Nose bleeds, mouth or gum bleeds?
See Low platelet count due to chemotherapy.

Pets and other animals?
Everyone should wash their hands after touching pets or other animals. See How should I wash my hands? and Hand washing tips for kids
If your child has had a bone marrow transplant, speak to your doctor first before allowing them to touch pets or other animals

Dental care?
See What is good mouth care? in the fact sheet Sore mouth due to chemotherapy

Personal and household hygiene?
Read Low white cell count and infection. See also Hand washing and hygiene.

School?
You and your child may want to consider asking your shared care or link nurse to arrange a school visit to talk to the teachers and your child's class about their illness and treatment. Also see School and education when your child has cancer.

Someone in the house with a cold?
Anyone with a cold should use tissues for nose blowing and sneezing and discard them into the household rubbish. Hands must be washed after nose-blowing and sneezing.

Physical activities?
There are some sports and games that should be avoided by some children receiving chemotherapy because of the chance they may be hurt by falling or knocking. An injury can have serious consequences like bleeding, infection or damage to the central venous catheter. Discuss physical activity with your child's doctor.

You might like to enter information specifically for your child in your folder, including:

  • a list of the physical activities (games and sports) which your child should not play
  • a list of the physical activities (games and sports) which are safe for your child to play

Pre-discharge check list

Work through this list with your child's nurse before discharge from hospital. Talk to the nurse or your child's doctor if there are any points on the list where you need information or clarification.

 

Have you been given a copy of your child's treatment protocol?   Yes / No
Have you been given medicine information sheets specific for your child? Yes / No
Have you received information about the precautions to take if your child will be taking chemotherapy medicine at home?  (See Chemotherapy safety at home ). Yes / No
Have you received information about the precautions to take if your child has had chemotherapy within the last 48 hours? (See Chemotherapy safety at home). Yes / No
Have you received a going home pack? Yes / No
Have you filled out and printed the page  Important contacts for your child with cancer? Yes / No
Have you received information about the physical activities that your child should avoid and the ones that are safe? (see Frequently asked questions about care at home) Yes / No
Have you met the following people: community nurse; day-stay nurse / link nurse social worker; dietitian; other? Yes / No

Please discuss with your child’s nurse, your understanding of the following:

How to take your child's temperature.  
Blood tests and the meaning of the results.  
The precautions to take and the observations to make if neutrophils are low.
 
The signs and symptoms of an infection.  
The precautions to take and the observations to make if platelets are low.  
Mouth care and where to get supplies for use.  
When Co-trimoxazole should be given.  
How frequently to flush and how frequently to dress the central venous catheter.  
What to do if you child comes in contact with someone who has chickenpox, shingles or measles.  
The need to discuss immunisation with your doctor, so that a safe plan can be developed.  
How to help avoid constipation and how to manage if it does happen.  
Do you know when next to go to hospital? Yes / No
Have you been shown where to find the outpatient clinic or day stay area? Yes / No
If you are a family living outside the tertiary treatment centre area, is: Yes / No
Yes / No
Have you met the Child Cancer Foundation (CCF) family support coordinator? Yes / No
If your child is adolescent or has adolescent siblings, have you met the CanTeen coordinator? Yes / No
Is there any other information you require? Yes / No
Do you have any questions for your doctor or nurse? Yes / No

Where to go for information and support

On this website
Childhood cancer: Where to go for more information and support

All the information in the Childhood cancer section of this website have been written by health professionals who work in the field of paediatric oncology. They have been reviewed by the members of the National Child Cancer Network (NZ). Medical information is authorised by the National Child Cancer Network Clinical Leader.

This page last reviewed 22 June 2013.
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