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Support for Families When a Child Has Cancer

Children rely on their parents for honest and helpful information during treatment for cancer.

Credit: iStock

 

When a child has cancer, every member of the family needs support. Parents often feel shocked and overwhelmed following their child’s cancer diagnosis. Honest and calm conversations build trust as you talk with your child and his or her siblings. Taking care of yourself during this difficult time is important; it’s not selfish. As you dig deep for strength, reach out to your child’s treatment team and to people in your family and community for support.

Talking with Your Child about Cancer

As you talk with your child, begin with the knowledge that you know your child best. Your child depends on you for helpful, accurate, and truthful information. Your child will learn a lot from your tone of voice and facial expressions, so stay calm when you talk with your child. 

When Your Child Is Diagnosed with Cancer

Watch this video to hear how parents moved forward after their child was diagnosed with cancer and found a hospital with expertise in treating children with cancer.

Access an audio described version of the video

The age-related suggestions below may be helpful as you work with the health care team, so your child knows what to expect during treatment, copes well with procedures, and feels supported.

If your child is less than 1 year old: Comfort your baby by holding and gently touching her. Skin to skin contact is ideal. Bring familiar items from home, such as toys or a blanket. Talk or sing to your child, since the sound of your voice is soothing. Try to keep up feeding and bedtime routines as much as possible.

If your child is 1 to 2 years old: Very young children understand things they can see and touch. Toddlers like to play, so find safe ways to let your child play. Toddlers also like to start making choices, so let your child choose a sticker or a flavor of medicine when possible. Prepare your child ahead of time if something will hurt. Not doing so may cause your child to become fearful and anxious.

If your child is 3 to 5 years old: To help your child understand his treatment better, ask the doctor if he can touch the models, machines, or supplies (tubes, bandages, or ports) ahead of time. If a procedure will hurt, prepare your child in advance. You can help to distract your child by reading a story or giving her a stuffed animal to hold.

If your child is 6 to 12 years old: School-aged children understand that medicines and treatment help them get better. They are able to cooperate with treatment but want to know what to expect. Children this age often have many questions, so be ready to answer them or to find the answers together. Relationships are important, so help your child to stay in touch with friends and family.

If your child is a teenager: Teens often focus on how cancer changes their lives—their friendships, their appearance, and their activities. They may be scared and angry about how cancer has isolated them from their friends. Look for ways to help your teen stay connected to friends. Give your teen some of the space and freedom he had before treatment and include him in treatment decisions.

Information to help you choose a hospital and learn more about your child’s treatment plan is included in the Diagnosis section of our childhood cancer guide for parents.

Answers to Questions from Parents Whose Child Has Cancer

Talk with your child’s health care team to get your questions answered. You may also find the suggestions below helpful:

Who should tell my child?
Many parents receive their child’s diagnosis from the doctor at the same time that their child learns of it. However, if you choose to be the one to tell your child, the doctor or nurse can help you decide what to say and how to answer her questions.

When should my child be told?
Your child should be told as soon as possible. This will help build trust between you and your child. It does not mean that your child needs to hear everything all at once.

What should I tell my child?
The information you share with your child depends on his age and what he can understand. Children of all ages need clear, simple information that makes sense to them. As much as possible, help him know what to expect by using ideas and words that he understands. Tell your child how treatment will make him feel and when something will hurt. Explain that strong medicine and treatments have helped other children.

How much should I tell my child?
Help your child to understand the basic facts about the illness, the treatment, and what to expect. It may be hard for many children to process too many details or information given too far in advance. Start with small amounts of information that your child can understand. Children often use their imaginations to make up answers to unanswered questions and may fear the worst. Answering questions honestly and having ongoing conversations can help your child. Telling untruths can cause your child to distrust you or people on their health care team.

How might my child react?
Each child is different. Some worry. Others get upset or become quiet, afraid, or defiant. Some express their feelings in words, others in actions. Some children regress to behaviors they had when they were younger. These are normal reactions to changes in life as they know it. Their schedule, the way they look and feel, and their friendships may all be changing. Expect that some days will be rough, and others will be easier. Tell your child, and find ways to show her, that you will always be there for her.

What can I do to help my child cope?
Children take cues from their parents, so being calm and hopeful can help your child. Show your love. Think about how your child and family have handled difficult times in the past. Some children feel better after talking. Others prefer to draw, write, play games, or listen to music.

Answers to Questions from Children after a Cancer Diagnosis

Talk with your child’s health care team about how to answer questions your child may have. You may also find these suggestions helpful:

What is cancer?
When talking about cancer with your child, start with simple words and concepts. Explain that cancer is not contagious—it’s not an illness that children catch from someone or that they can give to someone else. Young children may understand that they have a lump (tumor) that is making them sick or that their blood is not working the way it should. Parents and older children may want to read about different types of childhood cancer in the Diagnosis section of our childhood cancer guide for parents.

Why did I get cancer?
Some children think they did something bad or wrong to cause the cancer. Others wonder why they got sick. Tell your child that nothing he—or anyone else—did caused the cancer, and that doctors are working to learn more about what causes cancer in children.

  • You may tell your child: I don't know. Not even doctors know exactly why one child gets cancer and another doesn't. We do know that you didn’t do anything wrong, you didn't catch it from someone, and it’s not contagious.

Will I get better?
Being in the hospital or having many medical appointments can be scary for a child. Some children may know or have heard about a person who has died from cancer. Your child may wonder if she will get better.

  • You may tell your child: Cancer is a serious illness, and your doctors and nurses are giving you treatments that have helped other children. We are going to do all we can to help you get better. Let's talk with your doctor and nurse to learn more about the type of cancer you have.

How will I feel during treatment?
Your child may wonder how he may feel during treatment. Children with cancer often see others who have lost their hair or are very sick. Talk with the nurse or social worker to learn how your child’s treatment may affect how your child looks and feels, and about side effects that he may have.

  • You may tell your child: Even when two children have the same type of cancer, what happens to one child may not happen to the other. Your doctors and I will talk with you and explain what we know. We will all work together as a team to help you feel as comfortable as possible during treatment. 

Ways to Support Your Child with Cancer

Cancer treatment brings many changes to a child’s life and outlook. You can help your child by letting her live as normal a life as possible. Talk with the health care team to learn what to expect, as your child goes through treatment, so your child and family can prepare.

Supporting Your Child with Cancer

Listen to insights from pediatric oncology experts and parents on how to help your child when they are going through treatment for childhood cancer.

Access an audio described version of the video

Helping Your Child Adjust to Physical Changes  

Children can be sensitive about how they look and how others respond to them. Here are ways to help your child:

  • Prepare for physical changes: If treatment will cause your child's hair to fall out, let your child pick out a fun cap, scarf, and/or wig ahead of time. Some treatments may cause changes in weight. Meeting with a registered dietitian can help your child get the nutrients her body needs to stay strong during treatment. 
  • Side effects: Your child’s nurse will talk with you and your child about supportive care. This is care that is given to manage side effects and improve your child’s quality of life. Information to help lower pain, provide good nutrition, prevent infection, and manage common health problems during treatment is also in the Treatment section of our childhood cancer guide for parents
  • Help your child know how to respond: Sometimes people will stare, mistake your child's gender, or ask personal questions. Talk with your child and come up with an approach that works. Your child may choose to respond or to ignore comments.

Helping Your Child Connect with Friends 

Your child's friendships are tested and may change during a serious illness, like cancer. Sometimes it may seem as though old friends are no longer “there for them.” It may help if your child takes the first step and reaches out to friends. Children may also make new friends through this experience. Here are some steps you can take with your child:

  • Help your child stay in touch with friends: You can encourage or help your child connect with friends through text messages, video chats, phone calls, and/or social media.
  • Get tips and advice: A social worker or child-life specialist can help your child think through what they would and would not like to share with friends. If possible, and when your child is up to it, friends may be able to visit. Your child may also be able to participate in school and other activities, based on the advice of their doctor. 

Helping Your Child Cope with Difficult Emotions

Although over time many children with cancer cope well, your child may feel anxious, sad, stressed, scared, or become withdrawn at times. Talk with your child about what she is feeling and help her find ways to cope. Your child can also meet with a child-life specialist or psychologist about feelings that don’t have easy solutions or seem to be getting worse over time. These tips may help your child cope with difficult emotions:

  • Find ways to distract and entertain your child: Playing video games or watching movies can help your child to relax. You can also learn about other practice that can support your child during treatment, such as: art therapy, biofeedback, guided imagery, hypnosis, laughter therapy, massage therapy, meditation, music therapy,  and relaxation therapy, among others. Learn more about integrative medicine practices that help children in the Resources section of our childhood cancer guide for parents.
  • Stay calm but do not hide your feelings: Your child can feel your emotions. If you often feel sad or anxious, talk with your doctor and child's health care team so you can manage these emotions. Yet keep in mind that if you often hide your feelings, your child may also hide their feelings from you. 
  • Get help if you see emotional changes in your child: While it’s normal for your child to feel down or sad at times, if these feelings happen on most days over a long period of time, they may be signs that your child needs extra support. Meeting with your child's nurse, child-life specialist, and/or psychologist can help your child learn how to manage stress, and they can assess your child for mental health conditions such as an anxiety disorder and depression.

Helping Your Child Adjust to a New Normal

Your child may spend more time in the hospital and at home, during treatment. Here are ways to help your child cope with periods of isolation and time away from friends.

Hospital stays: Being in the hospital can especially difficult for children. It’s a different setting, with new people and routines, large machines, and sometimes painful procedures.

  • Bring in comfort items. Let your child choose favorite things from home, such as photos, games, and music. These items can comfort children and help them to relax.
  • Visit game rooms, playrooms, and teen rooms. Many hospitals have places where patients can play, relax, and spend time with other patients. These rooms often have toys, games, crafts, music, and computers. Encourage your child to take part in social events and activities that are offered at the hospital.

Isolation at home: While your child is receiving treatment, she may need to stay at home for extended periods of time, due to the side effects of cancer treatment such as fatigue, risk of infection, pain, and gastrointestinal complications, for example. 

  • Decorate your child’s room. Posters, pictures, and other decorations may brighten the room and help cheer up your child. Window markers are a fun way to decorate. Check to see if any items should be removed from your child’s room, since there are sometimes medical restrictions.
  • Explore new activities. If sports are off-limits, learn about other activities that can help your child stay active and have fun. Your child may also enjoy listening to music, reading, playing games, or writing. Some children with cancer discover new skills and interests they never knew they had.

Missing school: While some children with cancer are able to attend school, many need to take a leave of absence for short or long periods of time. Here are ways to get the academic support your child needs during this time:

  • Meet with your child's doctor to learn more about how treatment may affect your child's energy level and ability to keep up with schoolwork. Ask the doctor to write a letter to your child’s teachers that describes your child’s medical situation, limitations, and how much time your child is likely to miss.
  • Keep your child's teachers updated. Tell your child's teachers and principal about your child's medical situation. Share the letter from your child's doctor. Learn what schoolwork your child will miss and about ways for your child to keep up, as they are able.
  • Learn about assistance from the hospital and your child's school. Hospitals have education coordinators or nurses who can talk with you about academic resources and assistance for your child. You will also want to ask about an individualized education plan (IEP), also called a 504 plan, for your child.

Learn more about ways to help your child cope in the Support section of our childhood cancer guide for parents

Tips to Help Parents and Siblings When a Child Has Cancer

These suggestions can help you care for yourself, your children, and your family. Parents often say that their child’s diagnosis feels like a family diagnosis. Here is practical advice to help families cope and stay connected during this challenging time.

Support for Your Family When a Child Has Cancer

Everyone in the family needs support when a child has cancer. Get tips related to self-care, marriage, and support for siblings from oncology experts and parents. 

Access an audio described version of the video

Work to Keep Relationships Strong

Relationships and partnerships are strained and under pressure when a child has cancer. However, marriages can also grow stronger during this time. Here’s what parents said helped:

  • Keep lines of communication open: Talk about how you each deal best with stress. Make time to connect, even when time is limited. 
  • Remember that no two people cope the same way: Couples often have different coping strategies. If your spouse or partner does not seem as distraught as you, it does not mean he or she is suffering any less than you are. 
  • Make time: Even a quick call, text message, or handwritten note can go a long way in making your spouse’s or child’s day a better one.

Get Support from Family, Friends, and People in Your Community

Research shows what you most likely already know—that help from others strengthens and encourages your child and family. Family and friends may want to assist but might not know what you need. It may help to:

  • Find an easy way to update family and friends: Consider posting updates and getting practical support through sites such as Caring Bridge, My Cancer Circle, MyLifeLine, or  Lotsa Helping Hands. Share only what you feel comfortable sharing. 
  • Be specific about how people can support your family: Keep a list handy of things that others can do for your family. For example, people can cook, clean, grocery shop, or drive siblings to their activities.
  • Join a support group: Some groups meet in person, whereas others meet online. Many parents benefit from the experiences and information shared by other parents.
  • Seek professional help: If you are not sleeping well or are depressed, talk with your primary care doctor or people on your child’s health care team. Ask them to recommend a mental health specialist such as a psychiatrist, psychologist, counselor, or social worker.

Make Time to Renew Your Mind and Body

It can be tempting to put your own needs on hold and focus solely on your sick child. However, it’s essential that you make time for yourself. Doing so can also give you energy to care for your child. Here are some tips to help get you started:

  • Find ways to relax and lower stress: Some parents try something new, such as a yoga or deep-breathing class at the hospital. Others are refreshed by being outdoors, even for short periods. Whatever the method or place, find one that feels peaceful to you. Here are techniques you can use to relax, from a page that’s helpful for both patients and parents alike.
  • Fill waiting time: Pick a few activities that you enjoy and can do at the hospital, such as playing a game, reading, writing, or listening to music.
  • Stay physically active: Plan to walk, jog, go to the gym, or follow a workout app. Exercising with a friend or family member can make it easier to keep up the routine. If it’s hard to stay physically active at the hospital, try walking up and down the stairs or around the hospital or unit. Physical activity helps to lower stress and can also help you to sleep better at night.

Learn more about ways to cope and stay strong in the Support section of our childhood cancer guide for parents and in Support for Caregivers of Cancer Patients.

Support Siblings When a Brother or Sister has Cancer 

As a parent, you want to be there for all your children, yet this can be challenging when a child is being treated for cancer. You may notice that siblings are having a difficult time yet struggle to address their needs. Insights and suggestions on strategies to help siblings are shared in the video above.

Here are some more ways you can help siblings during this difficult time:

  • Listen to and connect with siblings: Set aside some time every day, even if it’s just a few minutes, to spend with your other children. Check in and ask how they are doing, even if you do not have an easy solution to every challenge they may be facing. It’s important to connect with and listen to them.
  • Keep siblings informed and involved: Talk with your children about their sibling’s cancer and tell them what to expect during treatment. If possible, find ways to include them in hospital visits. If you are far from home, find ways to connect through video chat, text messages, and phone calls, for example. 
  • Keep things as normal as you can: Arrange to keep siblings involved in school-related events and activities that are important to them. Ask friends and neighbors for support. Most people want to help and will appreciate being asked.

This booklet When Your Brother or Sister Has Cancer has quotes from siblings  about their experiences, checklists to help siblings get support, and a section of related organizations and resources. It can be printed or viewed as a booklet, an ePub, or a Kindle book. A hard copy of the booklet can also be ordered, for no charge.

Working with Your Child's Health Care Team

These suggestions can help you and your child to establish strong and effective relationships with your child’s health care team.

  • Build strong partnerships
    Give and expect to receive respect from the people on your child’s health care team. Open and honest communication will also make it easier for you to ask questions, discuss options, and feel confident that your child is in good hands.
  • Take advantage of the many specialists who can help your child
    Work with them to help your child learn about cancer, how it will be treated, prepare for tests, manage side effects, and cope.
  • If you get information online, make sure the source is credible
    It’s important to get accurate information that you understand and can use to make decisions. Share what you find with the health care team to confirm that it applies to your child.
  • Make sure you understand what your child’s health care team tells you
    Speak up when something is confusing or unclear, especially when decisions need to be made. Ask to see pictures or videos to help understand new medical information.
  • Keep your child’s pediatrician updated
    Ask for updates to be sent to your child’s regular pediatrician.

Managing Cancer Information During Your Child’s Treatment

Parents and pediatric oncology experts discuss how to find credible information and work together as active partners on a child’s treatment team.

Access an audio described version of the video 

You may also want to watch this video: Treatment Considerations for Children with Cancer  in which parents and pediatric oncology experts discuss childhood cancer treatment-related decisions, side effects, clinical trials, and strategies to care for children.

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