What is Cancer
Childhood Cancer

Caring for Your Child

Caring for someone with cancer can be very stressful, particularly when it is a child. The child with cancer may be experiencing distressing emotions about their cancer diagnosis, side effects from treatment and mood changes from the effects of medications. It is very important that carers of children with cancer look after themselves during this time. Having time out, a cup of coffee with a friend, and sharing worries and concerns with someone not involved in the child’s care are useful strategies.
 
Cancer Support Groups are usually open to patients and carers. There is a range of support services for children with cancer and their carers, such as free or subsidised accommodation at National Cancer Society Malaysia’s (NCSM’s) Children Home of Hope, the CancerLink foundation house and the Ronald McDonald house.
 
Support groups can offer the chance to share experiences and ways of coping. The Childhood Cancer Caring Society of KL, based at the University Malaya Medical Centre (UMMC) Paediatrics Wards, is a support group for children with cancer as well as their parents. Other support groups for parents include:
NCSM
National Cancer Council aka MAKNA
Sarawak Children’s Cancer Society
Children love to play and it is often when they are at their happiest. Play remains very important for a child with cancer and should be encouraged throughout treatment. The following websites provide helpful ideas about play:
  • Australia’s Starlight Foundation has set up an online community designed for young people and their families living with a serious illness such as cancer.  LiveWire.org.au
  • Australia’s Royal Children’s Hospital has developed a list of educational apps and websites a patient can play whilst in hospital. It is arranged by age groups.
If you need financial assistance, please ask your doctors or nurses to refer you to the hospital social worker. The welfare department may be able to assist you in funds for travelling or other support.
When treatment finishes, a range of emotions including relief, excitement, and apprehension can be experienced. Whilst it is a time of celebration, some people are surprised to find that they can be feeling a bit fearful too. Fearful about what the future holds, if the cancer will come back and of returning to everyday life without continuous hospital contact. This is all normal, it is important to get the help when treatment has finished.
Parents and carers may have some of the following questions after treatment finishes:
  • Frequency of check ups
  • What to do if a child develops a fever
  • Cancer and the impact of children learning
  • When to return to school
  • Who to contact for questions and concerns
  • When to get immunisations
  • Coping with fear of the cancer coming back
  • Travel insurance for the recovering child
For further information:
  • The Coming off treatment handbook has been developed by the United States’ Paediatric Integrated Cancer Service (PICS) to support families when their child completes treatment.
Major advances in treatment over the past two decades have improved survivorship and because more children are surviving, doctors now know that some cancer treatments can cause problems later in life - have ‘late effects’ - on the person’s health and wellbeing. Watching out for these problems with long-term follow up care ensures that, if problems do arise, they are dealt with early.
 
Childhood cancer survivors are at risk of developing several possible late effects from their cancer treatment. This does not mean all children who have had cancer treatment will develop late effects. The risk will depend on several factors such as:
  • the type of cancer the child had
  • which treatments were given and the doses
  • the age when receiving the treatments
The following are examples of the main types of problems that can happen later in life after childhood cancer treatment. The child’s doctor is the best person to ask about the possible late effects specific to the child being treated.
 
Heart or lung problems
Chemotherapy and radiotherapy can cause problems later in life with the heart and lungs, regular heart scans and tests are required.
 
Growth and development problems
Radiotherapy treatment can cause problems with bone growth.
 
Learning difficulties
Most children will not have long-term problems with learning after their cancer treatment. However, some children, especially those who have had treatment for a brain tumour, may have learning difficulties. They may need special attention at school to help them keep up with their studies.
 
Sexual development and fertility issues
Some treatments will affect a child’s sexual organs and functioning in both girls and boys. This can lead to having an effect on sexual development and ability to have children (their fertility). Treatments that may have this effect include:
  • radiotherapy to the brain, lower abdomen/pelvic area.
  • certain chemotherapy drugs.
  • total body irradiation.
  • surgery on the ovaries, womb or testes.
For a very small number of children who have a childhood cancer there is the risk they will develop another different type of cancer (second cancer) later in life. Having regular appointments with a local general practitioner throughout life is essential for all survivors of childhood cancer. 
Information Reviewed By:
Cancer Council Victoria with assistance from The Paediatric Integrated Cancer Service (PICS), parents and staff from the Oncology units at both The Royal Children’s Hospital, Melbourne & Monash Children's, Monash Health, Melbourne and OnTrac, Peter Mac Victorian Adolescent and Young Adult (AYA) Cancer Service.