Young People with Cancer
A Handbook for Parents

National Cancer Institute
National Institutes of Health

Coping With Cancer

Dealing With the Diagnosis

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. Many materials are available from the National Cancer Institute (see Sources of Information).

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. Such materials may be obtained from the organizations listed in the section Sources of Information.

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.

Continuing Life

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. One national group, the Candlelighters Childhood Cancer Foundation (see "Sources of Information" for a full description), has local chapters. Treatment center staff may be able to help you locate such a group.

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. Current records of bills and payments can be kept by listing them on a single sheet using the following format suggested in Nina Cottrell's Coping at Home with Cancer:

 

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 (described in "Sources of Information, Support, and Assistance") 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.

Sources of Information, Support, and Assistance

Candlelighters Childhood Cancer Foundation

Candlelighters Childhood Cancer Foundation is an international organization of parents whose children have or have had cancer. The name is taken from the saying that "It is better to light one candle than to curse the darkness."

Not all groups are called Candlelighters; the Wisconsin organization, for example, is LODAT (Living One Day At a Time).

Candlelighters was created in 1976. Headquartered in Washington, D.C., it maintains communications between parents and professionals through quarterly newsletters and between groups through bimonthly newsletters. It publishes a youth newsletter and a bibliography for parents, operates a parent information service, offers information and assistance in forming new groups, and makes available a variety of handbooks to such groups.

Family support groups under the aegis of Candlelighters have many functions, including:

• Exchanging practical information and ways of dealing with common problems;
• Providing an outlet for the frustrations of those under stress through self-help sessions;
• Offering a social outlet for parents and siblings, reducing the sense of isolation often imposed by cancer;
• Disseminating information through meetings featuring medical speakers, psychologists, or insurers; and
• Directing families to professional counseling.

Some of the local chapters have such services as a toll-free hotline and a program that provides visits to the oncology areas of hospitals for the parents of newly diagnosed patients.

For more information on Candlelighters chapters and programs, contact:

Candlelighters Childhood Cancer Foundation

7910 Woodmont Avenue

Suite 460

Bethesda, MD 20814

(301) 657-8401 or 800-366-CCCF

American Cancer Society

The American Cancer Society (ACS) is a national voluntary organization offering programs of cancer research, education, and patient service and rehabilitation.

Local ACS units conduct service programs for cancer patients and their families, including:

• Information, counseling, and guidance concerning ACS services, community health services, and other resources;
• Equipment loans for care of the homebound patient;
• Surgical dressings; and
• Transportation to and from treatment.

Depending on the facilities and resources of the units, these programs may be expanded to include home health care, blood programs, social work assistance, medications, and a complete rehabilitation program.

For further information, consult local telephone directories for the closest ACS office or contact:

American Cancer Society

National Headquarters

1599 Clifton Road, N.E.

Atlanta, GA 30329

1-800-ACS-2345

Leukemia Society of America, Inc.

Financial assistance and consultation services for referrals to other means of local support are offered by chapters of the Leukemia Society of America to cancer patients with leukemia and allied disorders. Financial coverage is reserved for outpatients and pays up to $750 per patient per year of costs not covered by other sources. The program includes payment for drugs used in the care, treatment, and/or control of leukemia and allied diseases; laboratory costs associated with blood transfusion; transportation; and up to $300 of costs for X-ray therapy for early Hodgkin's disease and up to $300 of costs for cranial radiation for children with acute lymphocytic leukemia.

For more information about the program and its local chapters, contact:

Leukemia Society of America, Inc.
600 Third Avenue
New York, NY 10016
1-800-955-4572

Cancer Information Service

The NCI-supported Cancer Information Service is a toll-free telephone inquiry system that supplies information about cancer and cancer-related resources to the general public, cancer patients and their families, and health professionals. CIS offices do not diagnose cancer or recommend treatment for individual cases. They do provide support, understanding, and rapid access to the latest information on cancer and local resources. Telephone information may be supplemented by booklets and other printed materials. All calls are kept confidential, and you do not need to give your name.

For additional information and publications on cancer, write to the

Office of Cancer Communications
National Cancer Institute
31 Center Drive MSC 2580
Building 31 Room 10A16
Bethesda, MD 20892-2580

or call the toll-free telephone number of the Cancer Information Service at
1-800-4-CANCER. Spanish-speaking staff members are also available.

PDQ Database

The National Cancer Institute has developed PDQ, a computerized database designed to give doctors quick and easy access to:

• The latest treatment information for most types of cancer;
• Descriptions of clinical trials that are open for patient entry; and
• Names of organizations and physicians involved in cancer care.

To get access to PDQ, a doctor can use an office computer with a telephone hookup and a PDQ access code or the services of a medical library with online searching capability. Cancer Information Service offices (1-800-4-CANCER) provide physicians with PDQ searches and can tell doctors how to get regular access to the database. Patients may ask their doctor to use PDQ or may call 1-800-4-CANCER themselves. Information specialists at this toll-free number use a variety of sources, including PDQ, to answer questions about cancer detection, prevention, diagnosis, treatment, and rehabilitation.

Ronald McDonald Houses

The first Ronald McDonald House opened in 1974 as a place where out-of-town families can stay while their children are being treated at the Children's Hospital of Philadelphia. Since that time, other houses have opened in other major cities. In general, a Ronald McDonald House is available for families of seriously ill children and provides lodging at economical rates. There are more than 150 Ronald McDonald Houses worldwide. A child life worker or social worker may be able to help you locate one in your area. For further information about the Ronald McDonald House program, contact:

 

Ronald McDonald House Coordinator
c/o McDonalds Corporation
1 Kroc Drive
Oak Brook, IL 60521
(312) 836-7100

Home Care for the Dying Child

Although treatment efforts are successful for many children with cancer, this is not always the case. When treatment is not successful and the child's disease becomes terminal, some parents may wish to have their child die at home rather than in the hospital. The patient may also prefer it. Parents who have taken their child home have shown that it is possible to provide quality care for their dying child when assisted by nurses, doctors, and other health professionals.

A home care program for children may exist in your area, but if one doesn't, you and the treatment center or a home health agency may have to work out the arrangements necessary for you to care for your child successfully. Coordination between parents and health care personnel is essential to success in caring for dying children. A home care nurse can help parents care for their child, help acquire any necessary equipment such as hospital beds or wheelchairs, and provide emotional support for parents.

Information on home care is available from Children's Hospice International. This organization can provide referrals for home care and hospice care in your area. Informational materials also are available. Contact:

Children's Hospice International
901 North Washington Street, Suite 700
Alexandria, VA 22314
1-800-242-4453

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