When Children Are Affected by Terminal Cancer – A Coping Guide

When children are affected by terminal cancer, in themselves or family, coping is difficult. Helping a young person cope with cancer is an important responsibility. Parents, older siblings, teachers, and other adults play a crucial role in helping them understand, deal with negative emotions, go through treatments, and mourn when the worst happens.

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When a Child Has Terminal Cancer

Cancer, and especially terminal cancer, is less common in children than adults. Mesothelioma is exceedingly rare in children, but it does occur.

Cancer is the second leading cause of death in children from age 1 to age 15. Just over 1,000 children in this age group will die from cancer in 2022.[1]

How Do You Talk to a Child with Terminal Cancer?

It’s devastating when a child is diagnosed with cancer. Seeing an innocent young person live with and die from this terrible disease is awful for parents and other adults. Adults in a child’s life must be strong and model how to live with the difficulties of cancer:[2]

• One of the most important things adults can do is talk to their children about cancer. Avoiding the subject doesn’t help and may promote greater fear.
• Age-appropriate conversations will help a child better understand what is happening. It can also let them know what to expect and help alleviate fear.
• Parents know their children, so conversations about cancer should be limited in ways they feel is best.
• Be prepared to answer any questions your child may have. Some common things children ask include why they get cancer if they will get better, and what treatment will be like.
• Children sometimes think they did something bad to get cancer, so parents need to reassure them that nothing they did caused it.

How Do You Support and Comfort a Child with Cancer?

Communicating appropriately with a child with cancer is important, but there are many other ways to support them. Anyone living with cancer can expect significant life changes, so parents and other adults need to help children prepare for these changes.[2]

For example, there will be changes in appearance, such as hair loss or weight gain. Helping children adapt to these changes is crucial. Creative headwear or making mealtime more fun can be distracting but also help a child see some upsides to the changes they are going through. Games or fun activities unrelated to cancer are great for distraction and helping a child cope.[2]

Friendships are also likely to change when a child has cancer. This can be very difficult and can leave a child feeling isolated. Parents can help their child by making sure they have time to spend with friends. In addition, parents should be sure their child can attend school as much as possible.

They can also help children maintain social connections by encouraging friendships with other patients they meet during treatments.

How Do Families Cope with Terminal Cancer in a Child?

For parents and other family members, this is an unthinkable outcome. Being sick as a child is terrible, but to know a child will likely die from that illness before reaching adulthood is worse.

Some families must cope with this situation. Parents have their own grief but must also support their sick child and their other children. Families cope in several ways, both healthy and unhealthy. Some of the more positive ways to cope with a child’s terminal illness include:

• Learning more about the child’s diagnosis and working with their medical team to get the best palliative care.
• Talking openly—and age-appropriately—about the illness with all members of the family. Lying or hiding the truth does not help children.
• Being open to answering a child’s questions.
• Getting therapy for the entire family, either together, individually, or both.
• Spending a lot of time together as a family.
• Turning to religious and spiritual beliefs.
• Relying on other family members and close friends for support and practical help.

Helping a Child Cope When a Family Member Has Cancer

Children and young adults also struggle when a family member has cancer, especially when that person is a parent. It is difficult to know how a child or teen will react to a loved one with cancer but giving them that news is important.

There are many healthy ways to support a child through the loss of a family member due to mesothelioma or another terminal cancer:

• Cancer is not a good secret to keep. Children can often sense when something is wrong and may be more afraid if they don’t know what it is.[3]

• Age-appropriate discussions of what cancer is and what it means for the future are important. The American Cancer Society recommends that children up to eight get only basic information.

• Older children should be given more details. While each child will react differently, all children will be less anxious when told the truth.[3]

• The person living with cancer will be going through some changes and may often be tired, sick, or unable to participate in normal activities. This can be troubling for children, so talking about it is important.

• Make time to spend with children, even if you can’t do the same activities you would have previously. For example, you can play board games instead of basketball. Quality time can be immensely comforting to a child. It also helps to make life as normal as possible, sticking to routines and allowing children and teens to participate in their usual activities.

Mourning a Lost Loved One

When the worst happens, and a child loses someone to cancer, they need support during what is likely their first encounter with real grief. As with a cancer diagnosis, communicating about the loss is essential.

Allow a child to express feelings and ask questions. Be willing to explain what happened in as much detail as is appropriate. Be truthful, but leave out details that are not necessary. For instance, talk about death and avoid making confusing statements about a person being asleep.

A healthy grieving process is important for a child’s future mental health. Allow a child to grieve at their own pace, and be aware that grief often happens in bursts. A child may seem fine for a few days and then suddenly turn sad or angry again.[4]

Throughout the process, listen to your child, let them share their feelings, and allow them to have emotional outbursts.

Create healthy activities for remembering the loved one. This could include creating a memory book or having a small family ceremony to say goodbye. If your child does not seem to be coping in a healthy way, consider talking to a mental health professional for guidance.

Supporting Good Mental Health

Whenever cancer is a part of a child’s life, mental health is an important consideration. Children dealing with cancer, either their own or a loved one’s, may be more susceptible to anxiety, depression, and stress.

How Can You Tell a Child Needs Support After a Death?

Be aware of signs that a grieving child may be struggling with mental illness:

• Unusual changes in behavior
• Fatigue and other physical complaints with unknown causes
• Emotional outbursts
• Changes in regular sleeping or eating habits
• Lack of interest in usual activities

When Does a Child Need Professional Support for Grief?

Providing support, encouraging regular social interactions, providing appropriate information, and offering fun distractions are all important ways to help a child cope with cancer. However, sometimes, this isn’t enough.

If your child is still struggling, it may be time to seek professional help. While you may choose to talk to your pediatrician first, you should ultimately have your child evaluated by a mental health professional.

How Therapists Help Grieving Children

Various types of therapy can help a child cope with negative emotions brought on by a cancer diagnosis. Some therapists specialize in working with children and cancer patients.

These therapists can provide constructive behavioral therapies to help your child recognize and change negative thought patterns. Alternative therapies, like music therapy, play therapy, or art therapy, can also be healthy coping strategies for children and teens.

Unfortunately, children and teens must sometimes face cancer, either in themselves or a family member. It is up to adults in their lives to support them, guide them, and listen. A robust social support system, honest communication, and a healthy grieving process are essential for helping a child get through this period.

Page Edited by Patient Advocate Dave Foster

Dave has been a mesothelioma Patient Advocate for over 10 years. He consistently attends all major national and international mesothelioma meetings. In doing so, he is able to stay on top of the latest treatments, clinical trials, and research results. He also personally meets with mesothelioma patients and their families and connects them with the best medical specialists and legal representatives available.

Connect with Patient Advocate Dave Foster