Talking to children about their blood cancer

Talking to a child about blood cancer is hard. The way you explain it depends on their age and understanding. Younger children may worry about being away from their parents. Older children may fear pain or think they caused their illness. Teens usually understand a little more.

It’s important to talk openly and let children ask questions. Tell them what they need to know in a way they understand. Keeping secrets may cause them more worry. Let them share their feelings and be part of decisions when possible.

Cancer council has a guide for people with cancer and their families and friends on Talking to Kids About Cancer. Watch the Leukaemia Foundation seminar – Talking to kids about blood cancer – YouTube.

Making treatment decisions

Finding out your child has blood cancer is scary. Many parents worry about their child’s future. You might feel confused or rushed when making treatment decisions. Which treatment your child has depends on the type of blood cancer they have. Your treatment team is there to help. Bring a family member or friend to take notes and support you. Include your child in the discussions and decisions if possible.

The guides to best cancer care can help make sense of what should happen. They are a resource to help guide you and your family through cancer. Guide to best cancer care – Acute leukaemia in children, adolescents and young adults and Guide to best cancer care – Lymphoma.

Your treatment team are experienced in caring for children with cancer. Stay calm and support your child during any procedures, tests and treatment. If it’s too hard for you, you may ask a close family member to support your child at certain times. You can remain nearby to comfort them afterward.

Treatment and side effects

Every child reacts differently to treatment. Some treatments cause more side effects than others and these can be uncomfortable. There are medications to help with some side effects. Tell the treatment team about your child’s side effects and if medications do not help. Find information on specific types of childhood blood cancer and treatment is here.

Survival rates for blood cancer have improved. Most children recover and live healthy lives after treatment. But sometimes, treatment can have effects later in life. The treatment team will talk to you about these risks and ways to reduce them.

How blood cancer affects family and friends

Blood cancer affects the whole family. These affects are both emotional and practical. Reactions and emotions to childhood blood cancer includes shock, fear, sadness, disbelief and sometimes anger. Practical life changes include hospital visits, tests and treatments. There is also the coordination of care for other family members, like siblings or a grandparent. Parents and/or siblings may have to take on new roles at home. Financial issues may arise if a parent is unable to work and the cost of healthcare, transport and accommodation. Sometimes families are separated during treatment. Especially those from rural and regional areas who travel long distances for treatment.

Some things that can help:

• Talking with your family and friends about how you feel. Expressing feelings can help both adults and children normalise some of those feelings.
• Asking for help from family and friends – both practical help and emotional support.
• Gain knowledge about the blood cancer, treatment and side effects. This allows more control over the situation.
• Have accurate and up to date information on your child’s current condition to share with family and friends.
• Seek emotional, practical and financial support from social workers, nurses, counselors and peer support organisations.
• Leukaemia Foundation Healthcare Professionals can provide support on 1800 620 420 or Information and support service referral.
• If you need accommodation for your family speak to the hospital or treatment clinic social worker. Contact the Leukaemia Foundation – Accommodation services.

Can my child still go to school?

Going to school and being with friends is important for children. Many children with blood cancer can go to school between treatments. Speak to your treatment team about timing for your child to attend school. Staying in touch with classmates through calls, letters, or video chats can help. This makes it easier to go back to school later.

Teachers and caregivers should know about your child’s illness. Tiredness and risk of infection are common for a child during treatment. The treatment team will advise on how to protect your child while they are at school or other activities. Ask to be notified of any contagious infections in the school, like chicken pox or measles.

Telepresence and robot services connect children and young people with cancer to their school and friends. Find out more through Missing School and Robots Service | Cancer Hub.

What about siblings?

Brothers and sisters may feel sad, jealous, or left out. The way they respond to these emotions will depend on their age and development level. They might not understand what is happening. It helps to:

• Reassure them that they are loved.
• Let them talk about their feelings.
• Ask family or friends to spend time with them.
• Include them in conversations and some hospital visits when possible.

Every child reacts differently, but most siblings adjust well with time.

Having a child with blood cancer is challenging, but there is support available. If Your Sibling Has Cancer We Are Here For You | Canteen Australia.

Communication with family and friends

A childhood blood cancer can affect family, friends, neighbours, school and wider community groups. Updating everyone can be exhausting. Having a group chat, blog or private social media page can help with keeping people up to date. This can also be managed by close family or friends.

Useful sources of information and peer support organisations:

• CanTeen
• Make-a-Wish Foundation
• Starlight Foundation
• Camp Quality | Helping Kids 0-15 Facing Cancer
• Kids Cancer Charity & Family Support Australia | Redkite
• Ronald McDonald House Charities Australia
• So Your Child Has Cancer
• Coordinate support, strengthen community | Gather My Crew
• Regenerate
• Victorian Adolescent and Young Adult Cancer Service
• Young Adults and Blood Cancer – Leukaemia Foundation Support
• Our Cancer Support Services | Cancer Hub
• Chemotherapy safety at home | eviQ
• Reactions and emotions to childhood cancer | Cancer Council