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Young People with Cancer: A Handbook for Parents

  • Posted: 07/31/2003

Moving on With Life

Life Goes On
Financial and Insurance Issues

One of the challenges facing the family of a child who has cancer is going on with everyday life. Moving forward is not an easy task. It may be hardest during times of stress: when you find out your child has cancer, when your child is in the hospital, or when your child is suffering from the side effects of treatment.

Even when the treatments are going well, the cancer still affects each member of your family. When your child enters the hospital or goes for treatments, each member has to adjust in some way. Family members may be apart. Days of work may be missed. Brothers and sisters may feel left out. Everyone may be worried and tense.

Despite all this, family life goes on. Brothers and sisters have school and activities. Parents have jobs. It is hard to keep up with everyday activities and responsibilities while being with and caring for your child with cancer.

As the mother or father of a child who has cancer, remember that you are not alone. You can get help from many sources, such as the treatment team, which includes a social worker who can help you in dealing with your child's illness; other parents of children with cancer; support groups; or others. (You can find more information in resources) The information below may also be helpful for you, your child, the other children in your family, your extended family, and friends.

 

Life Goes On

Your Child

Even with a diagnosis of cancer, your child still has the same needs as other young people - going to school, having friends, and enjoying things that were a part of life before cancer. You can help meet these needs by letting your child live as normal a life as possible. Some activities, however, may need to be changed at different times during treatment. After chemotherapy or radiation therapy, your child may be very tired and, therefore, need more rest. This tiredness is to be expected. Help your child find other things to do, such as new hobbies, or ask friends to come over to draw or paint.

School and Friends

Encourage your child to stay in touch with friends. Keeping contact is easier if your child can continue to go to school while being diagnosed and treated, but staying in school is not always possible. If time off from school is needed, it is best for your child to return to school as soon as possible. Children who have cancer need and like to be with others their age, and keeping up with schoolwork makes them feel good about themselves. Some cancer centers offer back-to-school programs, which may help children and classmates understand the diagnosis and know what to expect. You may ask your doctor, nurse, or child-life specialist to visit your child's classroom.

Children often worry about how their friends and classmates will act toward them, especially if they have missed a lot of school or return with obvious physical changes, such as hair loss or a missing limb. Other students are usually accepting, but they may have questions. Help your child to think of ways to answer their questions and to tell friends and classmates that they cannot "catch" the disease. Your treatment team has had experience helping families with school. Ask them to help your child. Ask your nurse if the team or hospital has a school reentry program. Such programs send nurses to the child's classroom to talk about the child's cancer and treatment with classmates and teachers.

Your child needs to know that many people, including children, are uneasy about a serious illness. These people may act differently or say hurtful or wrong things to someone who has cancer.

You may want to talk with your child's teachers and school nurse about the disease, treatment, days missed, and any needed changes in activity. You and your family, the doctor, or members of the treatment team can explain your child's medical condition and answer questions. Teachers and other school staff may want to use this information to talk with the other students about what to expect when your child returns to school.

If your child cannot return to school right away, a home tutor may be available through the school system to help your child keep up with studies, making it easier to return to school.

To help your child and his or her siblings deal with fears and feelings, you may want to:

  • Say "I love you" often.
  • Assure your children that the cancer and its treatment are not punishments.
  • Encourage your child or children to talk about the cancer and cancer treatment. Ask your children questions to get the conversation started. Family talks can help everyone feel less worried. Talking helps the whole family cope with the illness together.
  • Tell your children that is it okay to feel sad and cry.
  • Encourage activities to help your child feel more relaxed. Drawing, playing with harmless medical supplies or puppets, and role-playing may help your child feel better.

In addition, setting limits for behavior and activities is still important and even comforting to your child. But it is helpful to remember that children, like adults, have good days and bad days. Help your child feel part of normal life.

  • Allow your child to make choices as long as they do not cause problems with treatment.
  • Use the same rules and level of discipline as before the cancer diagnosis and treatment.
  • Ask your child to continue doing regular chores around the house, when able.

Supporting Your Child

Like you, your child is likely to feel uncertain, worried, and afraid at times, but he or she may find it hard to talk about these fears and may behave differently than usual. For example, your child may become loud or bossy, be quieter than usual, have nightmares, have changes in eating habits, not do as well in school, or go back to earlier behaviors such as bedwetting or thumb-sucking.

These common behavior changes are just a few of the ones you may see. You may want to talk about such changes with the doctor, nurse, social worker, teachers, and school counselor, who have had experiences like yours.

Teenagers who have cancer have special concerns. They frequently complain that their parents try to protect them too much. Teenagers are at a stage in their lives when they are naturally trying to be their own bosses and do things for themselves, but having cancer forces them to depend on you. Giving teenagers a chance to make their own decisions and choices, when possible, will help.

You

Your child's illness will bring many changes to your life. To help you cope with these changes, you may want to consider the following suggestions:

  • Make time for yourself. Try to do some of the things you did before your child got sick. Do not feel guilty that you need some time for yourself. Also, make a special effort to find private times to talk with your partner or those who are close to you. Do not let all your talk be about your child with cancer.
  • Prepare yourself for a lot of waiting. Find ways to make waiting during clinic visits or while in the hospital less frustrating. Take something to read or do while your child is asleep or does not need your attention.
  • Turn to treatment staff or other resources for support. Treatment centers have trained staff who can talk with you about your concerns. Make use of these people for support.
  • Contact support groups. Your treatment center can provide names of support groups at which you can meet with other parents of children who have cancer. Community resources can provide support and information. They can tell you how other parents have dealt, or are dealing, with the same types of situations you are facing.
  • Share the care of your child with your partner or others close to the family. For example, if your child is in the hospital for a long stay, you and your partner, or friends or relatives, may want to take turns staying with your child. Letting them help will not only give each of you a break from the hospital, but it will help keep you from growing apart when one becomes more involved than the other in your child's treatment.

Brothers and Sisters

The lives of children who have a brother or sister who has cancer change a great deal. Siblings may have many different feelings about the brother or sister who has cancer and the extra attention the child receives. They may feel sorry for their sibling who is ill. Younger children may feel that they caused the cancer. Or they may believe that their own needs are being ignored.

When a child is in the hospital and is very ill, the focus is on that child. As a parent, you may not be able to pay as much attention to your other children as you did before. You may have to miss many of their special school or sports events. You may also use up all your energy and patience caring for your child who has cancer and not have enough energy or time to talk with your other children, play with them, or help them with their homework. It is natural, then, for siblings to be annoyed at the attention your child who has cancer is receiving.

As a result, siblings' behavior may change. They may become depressed, have headaches, or begin to have problems in school. School counselors and support groups may be able to offer you helpful advice for dealing with these issues. In addition, here are some things you can do to help your other children:

  • Talk with them about their feelings. Talk with them about the special attention your child who has cancer is getting. Let them know that feeling mad is natural. Try to explain what is happening and why you may not be around as much as you were before.
  • Talk with them about the cancer, the treatment, and care. Younger children's fears can be helped by knowing they couldn't have caused the illness by wishing or by spreading germs from a cold. Treatment and procedures should be explained as being helpful things and not punishments.
  • Spend time with your other children. Try to spend some time with them doing the things they like.
  • Encourage them to take part in outside activities. Make a point of noticing and praising what they do in these activities.
  • Involve them in their brother's or sister's treatment. Let them come along with you to the clinic or hospital. Having them along will allow them to see for themselves what the hospital, clinic, and treatment are like.
  • Talk with them about questions their schoolmates and friends may ask. Help them think of possible questions and answers so that they will feel comfortable talking about their brother's or sister's illness.
  • Ask other family members and friends to spend time with the other children in the family. For example, an aunt or uncle might go to school events or attend important games or performances. A neighbor might help them with homework or take them on outings.

Family and Friends

A diagnosis of cancer affects not only the child, parents, and siblings, but also grandparents, other relatives, and friends. These people can support and assist you during this time.

Your employers also may need to be told about your child's illness, so they will know why you are asking for extra time off from work. If needed, your child's doctor can write your employer to explain the situation.

You may need to tell people how to help you. Here are some ideas on how to tell them:

  • Be open and honest.
  • Take the lead to show others how you and your child want to be treated.
  • If they are giving you too much attention, point it out.
  • You may find it tiring to have to repeat details about your child's illness to many family members and friends. Ask one person to handle calls and questions. Or, you can leave short messages on a home answering machine.
  • It can be helpful to ask one friend or family member to be the "point person" to share with people your needs - for example, getting the wash done or shopping for groceries.

 

Financial and Insurance Issues

If you are like most parents of children who have cancer, you will be worried about the costs of treatment and continuing care. You want the best care but are afraid of the costs and how they will be met. You may not have health insurance. Or insurance may not cover all costs. Some insurers will not cover certain costs when a new treatment is under study.

You will need to understand the coverage that your policies offer. Here are some tips for making the most of your insurance:

  • Get copies of your insurance policies and find out exactly what is covered.
  • Get help if you need it to understand the policy or how to file claims if you need to. Do not be afraid to ask friends, family members, or a social worker for help. Private companies and some community organizations also offer help to deal with insurance.
  • Keep careful records of all expenses and claims. Store bills and insurance forms together to make it easier at tax time.
  • File claims for all covered costs. Sometimes, people do not take full advantage of their insurance, either because they do not know about a benefit or are put off by the paperwork.
  • If your claim is turned down, file again. Ask your doctor to explain to the company why the services should be covered under your policy. If you are turned down again, find out if the company has an appeals process.