Maintaining a Normal Life with Childhood Cancer

One of the challenges facing the family of a child with cancer is maintaining a normal life.

This is not always an easy task, particularly during moments of high stress such as at the time of diagnosis and during the hospitalizations and relapses. Even when treatment is going successfully, the lives of the patient and family members are influenced by the disease and its treatment and side effects. Schedules are rearranged to accommodate hospitalization or clinic visits, family members may be separated, siblings may feel neglected. Everyone may be worried or tense.

Despite all this, the continued development of family members demands that life continue as normally as possible under the circumstances. To see that this happens, the sick child should be treated as normally as possible, the needs and feelings of the patient's siblings attended to, and prediagnosis sources of support kept open for both the parents and the child. In addition, new sources of support such as other parents of children with cancer and treatment team members, can help parents cope.

The Parents

To cope with the child's illness and the changes this brings in your own life, you may want to consider the following suggestions:

• Make a special effort to find private times to communicate with your spouse, or if you are a single parent, with others close to you. Don't allow all your discussions to revolve around the sick child. Make time to do things you enjoyed doing together before your child became sick.

• Find ways to reduce the frustration you may feel when clinic visits require waiting for procedures, test results, or consultations with physicians. When your child is hospitalized, try to make it as easy on yourself as possible. Bring something to read or do while the child is sleeping or doesn't need your individual attention.

• If work schedules permit and the distance between hospital and home is close enough, you and your spouse may alternate staying with the hospitalized child. Weekends may be a good time for a switch: the parent who has been at home or work can stay at the hospital, and the other parent can spend time at home with the other children and rest. This also allows both parents to become familiar with the child's life in the hospital and various aspects of treatment. It reduces the gap that may grow between parents when one becomes much more actively involved in the treatment than the other. If you are a single parent, other family members or friends who are close to the child may be able to stay at the hospital occasionally so you can rest.

• Don't hesitate to turn to treatment staff for support. Most treatment centers have psychologists, social workers, nurse clinicians, or chaplains available to talk about special concerns.

• You may want to look for other sources of support Talk to other parents of children with cancer informally in the hospital or clinic. Your treatment center may have a parents' group supervised by a staff member for more formal discussions. In addition, organizations outside the center may also exist. Such groups may provide support and information on how others have dealt or are dealing with situations you are facing.

When your child is in remission, it may be tempting to put all thoughts of the cancer out of your mind. And, indeed, this is a good time to get a rest from it and focus your attention on other segments of your life. However, this is also a good time to clear up any misconceptions about the cancer that the patient, siblings, or other family members and friends may have.

This is particularly true for the patient and siblings when treatment has been a lengthy process. You may need to initiate discussions to update information if you feel that this has not happened naturally during the course of treatment and that the child is concerned but reluctant to raise questions.

The Patient

Although the diagnosis of cancer will change your child's life for a time, the child still has the same needs as other young people-for friends, school, and the activities enjoyed before the illness. You can help by encouraging your child to continue a "normal" life as much as possible.

Friendships may be maintained during hospitalization or when your child is sick at home through visits, letters, or telephone calls.

• School -- For the school-aged child, continuing with school is vital. School is the major activity of children the same age, and continuing to attend school will reinforce the child's sense of well-being. Furthermore, it prevents the child from falling behind others the same age in learning and in the emotional development that comes from participating in school and school activities. When your child is hospitalized, a special hospital school program may be available. If your child is receiving frequent treatments or is too ill to attend school while at home, a home tutor may be available through the school system (the treatment center may be able to help you arrange for this). But home tutoring should be undertaken with the understanding that it is directed toward easing the eventual return to school.

  When the young person returns to school, the teachers, counselor, school nurse, and principal may need information about the cancer and its treatment, any absences necessary for treatment, and any restrictions on activity. Teachers should be encouraged to give normal, equal attention instead of granting special favors that the child's condition does not warrant.

  Both you and your child may be anxious about the return to school. Your child may be uneasy about how classmates will react to any change in appearance such as hair or weight loss, weight gain, or loss of a limb through amputation. You may find yourself reluctant to allow the return because you are afraid your child will become ill or you find separation difficult. Both reactions are common, but your child should return to school. Accept the child's fear of rejection and try to help deal with it. Most young people and parents find that their fears are unwarranted. Usually, classmates accept the patient and condition, and the child gains a sense of self-confidence by resuming the former role as a student. Because classmates may have questions about the child's cancer and any changes in appearance, you may want to help your child anticipate these questions and answers to them.

• Discipline -- Discipline is important to the normal development of all children. This is no less true when they have cancer. However, the special circumstances of these children's lives may make maintaining discipline more difficult. Having seen their child ill and in pain, parents may attempt to make up for this by giving extra presents or allowing behavior they would not tolerate in another child. They may find it difficult to discipline the child with cancer because of the uncertainty of the future. Although it is true that for many of these young people the future is uncertain, and some will die, discipline is an important part of seeing that the quality of life is maintained.

  It may also be tempting to overprotect your child, to keep the child with you and away from situations you cannot control. This may deny your child the opportunity to participate in normal activities necessary for growth and development.

  Some parents say that discipline and the setting of boundaries for behavior and activity are all the more difficult because they do not know what they can reasonably expect of their child. Ask your physician or other members of the treatment staff whether therapy may be making your child behave differently and whether any limits should be set on activities. If "contact" sports should be avoided because the child's platelet count is low, you will want to see that he avoids them. But if there is no reason not to go skateboarding or participate in sports, denying this may be overprotection on your part at a time when your child should be enjoying normal activities. Some medications may cause tiredness. In these cases, the child may not have the energy to participate in some functions. Some children, however, may occasionally complain of being tired to avoid chores they do not enjoy or activities they are reluctant to try. When you know what to expect, you will be able to treat your sick child as you would any other child.

• Adolescents -- Many teenage patients complain that their parents are overprotective. Although this is a common cry of adolescents, it may be especially true with teenage cancer patients who are at a stage in their lives when they are naturally striving for independence but have a disease that forces them to be dependent on you and caregivers. Adolescents' attempts to achieve independence and make some of their own decisions should be encouraged within the limits set out by medical personnel.

  With adolescents, special questions may arise. Those with driver's permits may want to go to the clinic alone or with a friend. Frustration over the disease-related dependence may increase their need to rebel against authority figures, which in this case could include physicians and other hospital personnel as well as you and other family members.

  As with many teenagers, the questions of sexuality and drug use (including alcohol) may arise. In general, these are neither more nor less complex than when these issues are faced by adolescents who do not have cancer. In terms of drug use, however, the issue of marijuana may take on extra importance if the patient is on chemotherapy and has heard that marijuana helps prevent vomiting after chemotherapy. There is some evidence that THC, the active ingredient in marijuana, may be effective in controlling chemotherapy-induced nausea and vomiting. How ever, NCI scientists believe that synthetic THC can be useful only for a very few patients who have nausea and vomiting that cannot be controlled by other medications.

Siblings

Siblings of cancer patients may have many different feelings about the patient, the illness, and the attention the patient receives. While sympathizing with their brother or sister who is ill, they may still feel some resentment and believe that they are being neglected. In many cases, this is true. During times of hospitalization or when the patient is not feeling well, attention may focus on the sick child. As parents, you may not be able to pay as much attention to the siblings as you did before. You may have to miss school functions or ball games in which the siblings are participating. You may have little emotional reserve left after dealing with your sick child to talk with siblings about their concerns, to play with them, or help with their homework.

When you do have the energy, try to make special time for the siblings. Encourage them to become involved in outside activities and make a point of recognizing their achievements. When you can, make plans to spend time alone with them and do things that interest them.

Others may focus special attention on the sick child. It is not unnatural, then, for siblings to resent the "privileged status" of the sick child in the family, neighborhood, and school and the lack of attention to their own needs. Talking with siblings about the special attention paid to the sick child, letting them know that feelings of resentment are natural, and enabling them to share in the family crisis will encourage healthy growth and maturity. Efforts should be made to give equal attention or explanations when this is not possible.

One way to help them to understand their brother's or sister's illness is by involving them in the treatment. Older children in particular welcome the opportunity to be taken into their parents' confidence and will often respond in helpful ways. Finding things for them to do for their sick brother or sister, or their worried parents, gives many young people a sense of belonging and usefulness that might otherwise be lacking in the family's focus on cancer.

Siblings may accompany you to the clinic when the patient gets treatment or, if possible, visit when the patient is hospitalized. This will allow them to see for themselves what the hospital, clinic, and treatment are like. If this is not possible because of distance, try to describe the setting and situation. Photographs may also be helpful. Siblings may need such concrete experiences or explanations to prevent the construction of fantasies about the hospital and the hospital experience. Fantasies may range from fearing that the patient is being tortured to believing that the patient is having a good time; siblings may be terrified or jealous.

Remember, the patient's brothers and sisters may be asked questions about the illness by schoolmates or others in the community. They should have enough information to answer these questions. In fact, you might want to help them anticipate questions or comments and discuss possible answers.

Behavior Changes in Siblings

Behavior changes among siblings of young people with cancer are common and can indicate that they are having trouble dealing with the situation. They may become depressed, have headaches, or begin to have problems in school. If necessary, counseling can help them cope with their feelings, and treatment center staff can help with this. If their teachers are aware that a brother or sister has cancer and that this might affect the student, teachers can alert you if problems arise at school.

Remember that siblings, like all children, don't care about tomorrow and want equal treatment and attention today. It helps to appreciate them as individuals and to make a special effort to keep in touch with their needs.

Family and Friends

A diagnosis of cancer affects not only the patient's parents and siblings but also the grandparents, other relatives, and family friends. Ideally, these people can provide support and assistance. They can babysit and spend time with the siblings, stay with the sick child to relieve you, or assist in the many practical problems that arise when a household must continue to function under stress.

Unfortunately, they are not always able to do this. Grandparents may feel particularly lost and helpless, because they are concerned about their grandchild and at the same time cannot stop the suffering of their own child. If grandparents do not understand and accept the situation, you may find yourself in the difficult position of dealing with your own emotional difficulties while attempting to support the grand parents. Treatment team members may be helpful; they can explain the child's condition to the grand parents. Being allowed to participate in meetings of parents' groups may also help grandparents deal with their feelings about the child's illness.

Each family has its own way of relating to relatives, friends, and neighbors. Above all, initial honesty is of real value in the long-term handling of any problems. People want and need to help, but they may need assistance from you to do so. They will need information about the disease and its treatment. Some may have to be told such basics as the fact that cancer is not contagious.

In general, you and your sick child must take the lead in showing others how you want to be treated.

You may need to point out to family and friends that too much attention or indulgence does not help the patient. For yourself, you may need to show others that you want to be treated as you were before, and although your time may be limited, you would like to be included in activities you previously enjoyed together.

Your employers may also need to be told about your child's sickness so they can understand the reason for requests for time off from work. If you feel it is necessary, the child's doctor may write your employer and explain the situation.

Finally, in their efforts to help, people will give all sorts of advice. If their comments are confusing or upsetting, make a point of discussing them with medical personnel.

Finances

The cost of your child's treatment may cause additional pressure in an already tense situation. The desire to have the best in care may be offset by fear about the costs and how they will be met. As soon as financial questions arise, ask your doctor or the social worker for help.

Because health and life insurance questions can influence major health decisions, you'll need a clear understanding of the coverage your policies offer. Caregivers, particularly medical social workers, can clarify individual policies and help you fill out forms.

You should also keep complete records; store your bills and insurance forms together for easy reference at tax time. Keeping track of bills, your payments, and insurance payments by date and type of charge will simplify this further.

Treatment center staff may also be able to help you with other costs associated with cancer treatment. Check with them to see if you are eligible for special rates for parking or food at the hospital. If your child is hospitalized or needs daily treatment away from home, lodging costs for parents may be substantially reduced if a Ronald McDonald House is available or other special arrangements have been made. Medical social workers may be familiar with other programs such as those of voluntary cancer related organizations or state or local programs, that may be able to assist you.

Each year, Medical College of Wisconsin physicians care for more than 180,000 patients, representing nearly 500,000 patient visits. Medical College physicians practice at Children's Hospital of Wisconsin, Froedtert Memorial Lutheran Hospital, the Milwaukee VA Medical Center, and many other hospitals and clinics in Milwaukee and southeastern Wisconsin.