Coping with Childhood Cancer

Even though many parents suspect what the outcome of their child's diagnostic tests will be, the diagnosis confirming these fears comes as a shock. Initial explanations of the disease and treatment may be lost as parents try to come to grips with the reality that their child has cancer. This initial confusion is common, and repeated explanations of the diagnosis, treatment, and possible outcome of the disease may be necessary. Because this is a time when many important decisions must be made, as a parent, you should not be hesitant or embarrassed about asking and reasking questions about your child's disease and its treatment. Treatment centers often provide printed materials that give further explanations about cancer and its treatment and allow parents to absorb details at their own pace.

Parents' Initial Reactions

Parents may experience many feelings upon hearing that their child has cancer. Common reactions are denial, anger, guilt, grief, fear, and confusion. These reactions are natural and may be a way of helping you cope with the necessity of accepting a situation that you want to change but cannot. It is important to remember, however, that this is a time when your child needs your support and is particularly sensitive to your moods and feelings. Expressing these feelings too strongly may create problems for the child. A child, particularly an older child, who senses that parents do not want to acknowledge the disease, may try to protect them by not discussing his or her own feelings and fears. This feeling isolates the child from an important source of support and may only increase concerns, because the child may imagine the situation to be far worse than it actually is.

Although the diagnosis is usually definite once the test results have been examined, parents often ask for a second opinion from another physician. Your physician or treatment center can recommend someone to you, or you may wish to get a recommendation from another source. Second opinions are useful for confirming the diagnosis and reassuring parents about its accuracy and for confirming recommended treatment or exploration of another approach to treatment. However, once the diagnosis and treatment have been agreed upon by two physicians, seeking a third opinion may in fact reflect a parent's need to find another, more acceptable diagnosis. This puts an unfair burden on the sick child and delays treatment.

Accepting the Diagnosis

Gradually, parents realize that their child has cancer and nothing can change it. At this point they begin to cope with the diagnosis and their feelings about it. Some parents become angry. Targets for this anger may vary and can include God, themselves, the physician, or even the sick child for becoming ill. Because it is difficult to express anger toward the sick child, spouses and healthy children can become the scapegoats for unresolved feelings. Parents sometimes lose their tempers. Letting the anger out may occasionally be helpful. It is important to remember, however, that other members of the family experience similar feelings. Realizing that some reactions stem from this anger and talking things through with family members, treatment staff, or others who can give support may help in dealing with these feelings.

Feelings of guilt may stem from thinking that the child's illness is retribution for the parents' past mistakes. Parents may worry about how they treated the child or whether the child should or should not have received a certain vaccine. It may be difficult to accept that, despite all their efforts to understand the cause of their child's cancer, it will largely remain unexplained. One thing parents should remember is that, as far as scientists can determine, nothing they did or didn't do caused their child s illness.

Parents frequently blame themselves and their physicians for delays in diagnosis. All parents want to know when the cancer began, but there is no definite answer. The onset can be rapid or gradual. Because the early symptoms of cancer are often the same as those for common childhood illnesses, early diagnosis is sometimes very difficult-even for physicians. Furthermore, medical evidence suggests that in most cases of childhood cancer, the success of therapy depends more on the type of tumor and appropriate treatment than the time of diagnosis.

Telling Your Child

One of the most difficult decisions facing parents after diagnosis is what to tell their child. In the past, there were strong cultural tendencies to shelter children from painful realities. Today, there is general agreement that the patient should be told as much about the illness as the child's age allows him or her to understand. In fact, recent studies have shown that, even when children are not told about their disease, they learn its name and its implications within the first few months of treatment. It is virtually impossible to keep from children the knowledge that they are seriously ill, because their environment has already told them they are: they take special medicines, and their parents are likely to show extra concern about their health. At home and at school, they have opportunities to overhear discussions about their condition. In the hospital, they may see and talk to other children with the same disease.

The question, then, is not whether to talk about the diagnosis, but rather how to let your child know that concerns are shared and understood, and that you are willing to talk about these things with your child. The single most important and basic approach is gentle, honest communication. Failure to answer a child's question in an honest fashion undermines the parent child relationship at a time when the child desperately needs to communicate with the parents.

As a parent, you are the best judge of your child's moods. But you may want to keep in mind that, just because your child does not talk about the illness and the fears related to it (including death), you cannot assume he or she does not have these fears. The child who knows the illness is more serious than the usual childhood illness is undoubtedly afraid, and secrecy tends to isolate and increase fears.

Exactly when and what to tell will depend on your child's age and maturity and your attitudes. You may prefer to tell the child yourself, with or without the physician present, or you may want the doctor to do it. Use the method that makes you feel most comfortable.

Age-Related Concerns of Children

Your physician or other members of the treatment team may be able to help you determine what and how to tell the child. Some of this will depend on the child's age. In general, toddlers need only be told that they are sick, that they have to take medicine to get better, and that needles hurt, but only for a minute. Separation, abandonment, and loneliness are especially frightening to children under age 5. They need to be reassured that, even if you have to leave for a while, you will be back. Children between the ages of 6 and 10 and perhaps as young as age 5 have fears relating to physical injury and bodily harm. They understand that theirs is no ordinary illness; it is very serious and very threatening. Thus, they need to know that they have cancer, a serious but treatable disease. They may also be told that the cause of cancer is unknown, that they will require a lot of medicine, and that it may take some time before they really feel well again. Much can be said with honesty and hope.

Older children and adolescents are old enough to understand their diagnosis and treatment and also its implications. They may equate cancer with dying, and they need to know not only about their diagnosis and treatment, but also that cancer can often be successfully treated and about treatment advances and increased survival rates. To these young people, the impact that cancer and its treatment will have on their normal activities, appearance, and relationships with peers may be especially important.

Reassuring Your Child

Whatever you tell your child about the illness, he or she may bring up the issue of death and the fears it creates. Be prepared to cope with questions about death, even if they are painful. Refusing to discuss death may deny your child an outlet for some strong and possibly frightening feelings, and it will deny you the opportunity to offer comfort or reassurance. In addition to discussing the child's feelings and fears, it is important to stress to all young people with cancer the fact that cancer can be treated, that research for better methods is ongoing, and that treatments are improving all the time.

Finally, young people of all ages tend to feel guilt and anger at the time of a severe illness. Guilt feelings may stem from the often subconscious feeling that disease is a punishment for being bad. Your child, therefore, needs frequent reassurances that he or she has done nothing wrong and is loved. The child may direct anger inward or at you for letting the illness happen. It is important for you to remember that even when your child is angry with you, your child loves you.

Many parents fear they will say something wrong that will upset their child or cause undue distress. In honest discussions this rarely happens. Even if initially upset or angry, the child will eventually benefit from the sharing of concerns with loved ones.

By handling the situation as openly as possible, the parent and child are free to resume as normal a life as possible. Shared awareness among the young person, parents, and medical personnel frequently has a soothing effect. The child seems happier knowing about the disease than fearing the unknown. Medical care is more successful because the child can actively participate. Parents do not carry the extra burden of concealing the truth. Despite the uncertainties and the heartaches, everyone becomes more comfortable with the disease and with the future.

In addition to talking with their parents and caregivers, young people with cancer may want to read about cancer and hospitalization.

Telling the Brothers and Sisters

The diagnosis of cancer affects the entire family. For the siblings, the initial period can be a time of confusion and fear. Children, even young ones, are sensitive to what is happening. They are aware of a brother's or sister's hospitalization and of trips to the doctor and clinic. They notice their parents crying and trying to comfort one another. They may overhear parts of conversations that are difficult to understand. Children often conspire to figure out what is going on. Pieces of information are gathered, pooled, and analyzed. Because of this, it is important to take time early in the diagnosis and treatment process to have an honest discussion of the situation with the siblings. Encourage them to ask questions and answer these as honestly as possible. Explain the facts about cancer, keeping in mind the age and maturity of each child, and update the information periodically as the siblings and patient get older and are able to understand more. If the siblings are very young, it may be enough to say that their brother or sister is sick, will have to stay in the hospital for a while, and will need to take medicine for a long time. Older children will require more detailed information about cancer and its implications. Siblings should be prepared for physical changes in the patient, such as hair loss or amputation. If you wish, the doctors or nurses who care for the patient may be called upon to explain the diagnosis, prognosis, and treatment to the siblings or to discuss it with the entire family.

All of the children need to know that cancer is not contagious and that they will not become sick from contact with the patient. They need to be reassured that they are healthy themselves and that the possibility of cancer running in the family is highly unlikely.

Siblings also need to be told emphatically that they are in no way responsible for the illness. Angry outbursts, such as "Drop dead! " or "I hate you," which are said by all normal children at one time or another, frequently haunt a child after learning about a sibling's illness. Feelings of guilt or wrongdoing need to be dealt with immediately. Failure to do so may result in problems later on.

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.