Parents' Feelings and Tips to Help Cope:
Shock, Disbelief, Fear and Anxiety, Guilt, Sadness, Anger

Patients and Siblings:
How They May Feel

How to help:		infants and children up to age 3
		toddlers and preschoolers (3-5)
		school-age children (6-12)
		adolescents (13-18+)

Regaining Hope
Recommended Books for Parents and Children
Organizations that Help Children With Cancer and Their Families

The diagnosis of cancer in a child or teenager is a devastating blow to the parents and other family members who love the child affected. Cancer creates an instant crisis in the lives of the family. Ordinary daily life is no more. Parents must be away from work so they can be with their child. This may mean that siblings may be cared for by relatives or neighbors. The ill child or “the patient” becomes the major focus of family time and attention and other concerns are put on hold. Parents are given detailed information about the diagnosis and about available treatment. They must understand enough about the process to feel comfortable enough to give permission for tests and procedures, sign consent forms for treatment, and make important decisions about their child’s care.

Generally, all of this happens in a very brief period of time. In the first days and weeks after the diagnosis, parents describe being on an emotional rollercoaster or simply feeling like they are in a bad dream.. The feelings they report seem universal to all parents going through such a difficult time. What they actually say or do to express these feelings differs. How they handle their emotions usually reflects unique life experiences, cultural differences, and their individual coping styles in response to major distress.

Shock

No one is ever prepared to hear that their child has a life-threatening illness. At first, depending on their knowledge or personal experience with cancer, they fear that their child is going to suffer, perhaps die. At the least their family will experience extended loss and upheaval. They often describe feeling numb or as if they have been hit over the head by a baseball bat or something like that. Parents also report feeling confused or being unable to hear, remember, or think clearly when they are given information about their child’s diagnosis or treatment plan. This numbness allows them a little time to tolerate the painful feelings that tear through them. It gives parents time to gradually absorb and face these difficult emotions.

What helps parents deal with shock?

• being aware that it is a normal reaction
• seeking comfort from one another or from other family members or friends
• talking with the team social worker or nurse about their feelings
• relying on a family member or friend to take notes during doctor visits
• tape-recording important meetings with doctors, then revewing it with others
• asking staff to repeat information
• remembering that feelings of shock will pass with time

Disbelief and Denial

When parents are first told their child has cancer, it just seems too horrible to believe. Their child may not seem sick enough, or look sick enough, to have such a terrible problem. They may question whether the lab could have made a mistake or if the test results are really those of another child. They may wish to check on the reputation of the staff or medical center. If a diagnosis is hard to make, they may wonder if the medical staff knows as much as they should. They may decide to seek a second opinion. Initial disbelief or denial, like shock, can buffer painful feelings. It is also a way for parents to gain time to adjust to the reality of their child’s diagnosis and to confirm that their child will receive necessary and appropriate treatment. Denial is not a problem unless it interferes with timely treatment.

What helps parents deal with disbelief?

• seeking answers to all questions or doubts
• calling the ACS or other information resources for more information about diagnosis and treatment
• checking on the reputation of the medical center and qualifications of the treatment team
• asking for help in getting a second opinion

Fear and Anxiety

Being anxious and fearful when events and their outcomes are unfamiliar and beyond our control is a normal human reaction. Fear of cancer is universal. A family’s only first-hand encounter with cancer may have been with an older family member (when it might have seemed more acceptable or understandable). There may be stories about the problems other family members or friends had with chemotherapy or radiation therapy, or beliefs that having cancer is a death sentence. If a child is diagnosed in a major medical center, parents may believe rumors they have heard that doctors in big hospitals "experiment" on patients.

Since doctors cannot guarantee exactly how each person will respond to cancer treatment, fear of the death of a child or teenager is real. Relying on the knowledge and skill of others to protect the life of a much-loved child is frightening. Usually this is what the parent does. Now a parent must trust others to take care of their children. That’s hard to do. Also, facing major changes in daily life is upsetting and parents worry that they may not be up to all the tasks that will be asked of them. They may also be worried about their child getting through the necessary treatment. They fret about the impact treatment will have on their child’s body and self-esteem. Fear of intensive treatment, of an uncertain future, and of the unknown are all understandable fears.

What helps parents deal with fear?

• seeking accurate information and knowledge
• developing trust in treatment team members
• openly discussing fear and anxiety and seeking reassurance from team members
• using or learning strategies to reduce anxiety or tension
• hearing how other patients and parents have coped
• taking as much control as possible of everyday events and decisions
• accepting that some things cannot be controlled

Guilt

Questions of guilt come up soon after parents accept that their child really does have cancer. Parents have the major task of protecting their child from danger. They may question what behavior or action of theirs may have contributed to their child having this life-threatening disease. Could this be "payback" for past sins or the result of drug or alcohol abuse? Has their smoking caused the cancer? Mothers sometimes wonder if something they did or failed to do during pregnancy may have made a difference. A family history of cancer may lead to feelings that one parent or the other has "bad" genes. They may question the safety of where they live, the water supply they use, or wonder about toxins in the environment or in their home. They are concerned about whether something related to their occupation might be responsible for causing the cancer.

Parents also voice guilt about not paying enough attention to their child’s symptoms. They worry that they did not seek prompt medical attention or that they did not demand a specialist see their child when symptoms persisted. While it is normal to try to understand the causes of a problem, the fact is we do not currently know what causes most cancers. Parents are not at fault for their child’s cancer. Most children are diagnosed and begin treatment quickly. If you have feelings of guilt ask the medical team about your concerns.It is important not to let guilty feelings distract you from the many tasks you face when your child has cancer.

What helps parents deal with guilt?

• talking to the medical team about feelings of guilt
• seeking answers to all questions about the causes of cancer
• making changes to create a healthier home environment if this is a concern
• talking with other parents whose children have similar diagnoses, yet different backgrounds and experiences
• accepting that there may never be an answer to the question of what caused a child’s cancer
• realize that finding a reason for something isn’t going to change the fact that it has happened

Sadness/Feelings of Depression

Of course you will feel sad when your child is diagnosed with cancer. Every parent hopes and dreams that their children’s lives will be healthy, happy, and carefree. Cancer and its treatment change that dream. Parents will grieve for the loss of parts of those hopes. In grieving, they may have feelings of hopelessness about their child’s recovery. They are also sad when they think about the difficult days of treatment that lie ahead. The intensity of their feelings generally matches their child’s outlook for recovery, but also reflects their own temperament and personality. One parent may be more naturally optimistic, while another may react more negatively to any life problem.

Parents may find it hard to eat or sleep. They may not have the energy they need for routine daily tasks or for facing all they need to do now that their child has cancer. Parents often report feeling overwhelmed by their child’s diagnosis. Unfortunately, parents cannot be spared these painful and unpleasant feelings and will experience them throughout their child’s illness.

What helps parents deal with sadness and depression?

• finding ways to express what you feel such as crying and talking
• asking for support from each other, family, or friends
• using available support from social workers, counselors, nurses, psychologists, doctors
• seeking spiritual support through prayer, or guidance from pastors, rabbis, or others
• taking care of yourself: by eating right, getting rest, and caring for how you look
• attending to any individual needs for medication or mental health help

Anger

The fact that cancer threatens the life of an innocent child makes parents angry at the cruel and random injustice of life. When someone we love is attacked, even by illness, it is easy to want to blame someone or ask why me or why us? This anger is sometimes directed at the doctors who made the diagnosis and outlined the difficult treatment. In other cases, God is the object of rage as parents question a world in which children become ill and suffer and die. Parents also feel upset at the experiences they know their child will face, including the diagnostic tests and invasive procedures.

The daily frustrations of dealing with a large and complex health care system, strange surroundings, and numerous care providers are also sources of discomfort. Parents may feel resentful with one another over past or current issues that now affect their child’s treatment. Anger also may be directed at family or friends who make thoughtless remarks or who are too busy to provide support.

Parents are sometimes surprised and guilt-ridden to discover that they are even angry with the child whose illness is causing so many problems for the entire family or who is not cooperating with the doctors and nurses. Some parents hide their anger or even deny that they feel that way since they believe that such feelings are "not nice". Others express their anger in explosive and hostile ways, targeting particular individuals for blame. Sometimes other children in the family become a convenient target for that anger. Since parents and the care providers must work together to help the child or adolescent deal with the cancer and its treatment, it is important to find healthy ways to express anger and resolve valid complaints.

What helps parents deal with anger?

• accepting that anger is a normal part of this process
• understanding the cause of anger in a specific situation
• expressing anger effectively
• finding solutions when anger is justified
• using psychosocial support staff to discuss angry feelings
• seeking physical release of tension (walking, exercising, or sports)
• finding private space to vent feelings such as shouting or crying
• expressing feelings by writing a letter that you do not send or keeping a journal
• talking with other parents who have dealt with similar feelings
• letting anger go and accepting that there may be no one to blame, and try to use the energy in positive ways

Most parents worry, privately or out loud, about their ability to “handle” the painful feelings that come with a child having a cancer diagnosis. However, most parents have great strengths when it comes to protecting and caring for their children that will overcome any personal pain. Developing trust in and using the available team of experts can be very helpful. Social workers, nurses, doctors, and others who are part of the health care team can help parents understand the variety of emotions and that what they are feeling is normal. Experts can also help teach new skills, such as relaxation and stress management. Parents also can learn to handle feelings if they take care of their personal needs regarding eating, sleeping, health problems, exercise, and taking breaks from caring for their child. They also may need to see their family doctor for any new personal health concerns.

Grandparents, aunts, uncles, or other close family relatives often have feelings similar to those of parents and may struggle to manage many of the same emotions. They usually will benefit from accurate information and being asked to provide practical help. Team members can also help them discuss and handle their feelings. Occasionally, parents wish to shield particular family members from the news of the diagnosis because of concern about its emotional impact. The health care team can offer help for parents who must address these sensitive issues. In general, secrets in a family tend to close communication down rather than open it up and that tends to make communication not as healthy as it could be.

Feelings often just appear whether we like it or not. How we choose to express them, however, generally is under our control. Reactions to a major life crisis such as the diagnosis of cancer in a child or teenager are upsetting and painful, but natural. Most patients and family members express their feelings and manage them the best they can. Parents can help their child by showing that they are not ashamed or afraid to show what they feel, but also by remaining in some control of their emotions and focusing on moving forward.

How Can Parents Be Sure Their Child Will Receive the Best Available Treatment?

"Where can my child receive the best available treatment?" is one of the first questions parents ask. Childhood cancer is still quite rare and most pediatricians and family doctors will see only a handful of cases in all their years of practice. These doctors are generally the first to suspect cancer based on the child’s symptoms. They usually will refer their patient to the nearest major medical center staffed with experts trained to diagnose and treat childhood cancers. Studies show that children in the care of such specialists have a better chance of surviving their disease.

Both the National Cancer Institute and the American Cancer Society recommend that children with cancer receive care at such sites. These treatment centers use a comprehensive approach to care. Teams include doctors, nurses, social workers, psychologists, recreation therapists or child life workers, teachers, and chaplains. All are experienced in caring for young people with cancer. Medical center teams work closely with doctors and others in the community during treatment to offer children the best quality of care.

Most major centers across the United States that treat childhood cancer patients are members of COG or Children’s Oncology Group. This is a National Cancer Institute- supported clinical trials group devoted only to childhood and adolescent cancer research. Pediatric hematologists/oncologists in this group collaborate on the design of unbiased scientific studies called clinical trials that allow them to study which treatments work best for specific cancers. "State-of-the-art" treatment is then carried out according to a detailed plan (protocol). A few institutions design their own research trials for treatment. All major centers also offer standard treatment, which is a plan based on the best known treatment available.

Local pediatricians and family doctors usually discuss with parents the possibilities for diagnosis and treatment in their part of the country. They will then make a referral based on family preferences or on the options offered by insurers or managed care organizations. It may be necessary for families to travel outside their community to get the care that is needed for their child.

Sometimes older teenagers are referred to oncologists in their community who primarily treat adult patients, rather than to major medical centers. These patients may be eligible for clinical trials used by pediatric hematologists/oncologists. They also may benefit from the comprehensive approach to care used in the centers. Parents in these situations can ask what treatment is available at the nearest large hospital. Often there can be collaboration in treating a youngster in his home community according to a plan designed at a major center.

What Can Parents Do When They Want A Second Opinion?

Cancer in a child usually requires prompt attention. Once a diagnosis is made and all necessary tests are complete, treatment is started quickly. There are some cases in which arriving at a precise diagnosis is difficult and treatment planning must be delayed. Pediatric hematologists/oncologists often consult with their colleagues around the country to determine a diagnosis as quickly as possible.

If parents have doubts about the diagnosis they are given or about the treatment plan outlined for them, they have the right to seek a second opinion. Doctors generally understand and are comfortable with such requests and will help parents confer with specialists at another center. They can provide tissue from biopsies or other test results that will assist the doctors being consulted. Parents should check with their insurer or managed care provider to see if additional testing and consultation will be covered under their plan.

Occasionally, parents have such trouble believing their child’s diagnosis that they are not satisfied even with a second opinion. It is important for them to remember that any prolonged delay may harm their child’s chances for a good response to treatment. Once a diagnosis is confirmed, treatment should be started.

How Do Children with Cancer and Their Siblings React to the Diagnosis of Cancer?

Children and teenagers generally respond to news of a cancer diagnosis with a range of emotions which reflect those of their parents. Their feelings vary with what each child goes through as a result of the diagnosis. Patients may be become ill very quickly, have a lot of pain or have to undergo many diagnostic tests. Or they may not feel sick at all. Some may need to travel far from home to see the doctors. Others may wait days or weeks to learn what is actually wrong with them. Some may miss school for an extended period, or have to give up sports or other activities. Brothers and sisters may face abrupt and lengthy separation from parents and each other. The family’s usual life and daily routines are changed.

Fear and anxiety

Patients are often as stunned as parents by the sudden move from health to illness and the unwelcome tests and procedures necessary to arrive at a diagnosis. If the child needs to go into the hospital, it may be new experience. It could be scary and overwhelming. Fear and anxiety are the main emotions young people, both patients and siblings, face after diagnosis. It is very frightening to be told your body isn’t working right, and that you have cancer. It is normal for the child or teenager to be afraid of new and often painful experiences. It is hard to face blood drawing, biopsies, bone marrow aspirations, lumbar punctures, scans, or other tests. Some fear they will not be able to handle the treatment. It is upsetting, also, to see your parents and relatives worried by all that is happening. It is disturbing to have to deal with a strange place and many new people. It is worrisome to consider what the treatment will do to your body, how you will look and feel, and how your friends will react. It is often terrifying to think that you might die.

Brothers and sisters have their own fears. Sometimes they are afraid that they also might get cancer. They are not sure what cancer is but they know it is bad news. They may be afraid to visit the hospital or see their brother or sister sick or in pain. They worry that they do not have the whole the truth about what is happening. They are concerned when they see their parents distressed and fearful. They are upset at being separated from one or both parents and being in the care of relatives or friends. They worry about going to school and perhaps facing questions they cannot answer about their ill brother or sister. They are afraid their sibling will die.

Anger and guilt

Anger and guilt are also normal reactions of both the patient and his or her siblings. Patients question why this has happened to them. It is not fair! They are angry at all the things they have to do – be poked and prodded, swallow nasty-tasting liquids, take big pills, talk to dozens of people, lie in scary-looking machines, have their privacy invaded, be kept in a hospital. Feelings of guilt are also common. Patients worry that maybe they have cancer because they were bad in some way or had bad thoughts. Maybe something they did caused the cancer - telling lies, smoking, trying drugs, or having sex. They also may feel guilty that they are responsible for this family crisis and are concerned about their parents. They feel guilty that they are causing all this worry and trouble. This may be especially tough when parents are in conflict, divorced, or have other serious problems or stresses.

Siblings may also be angry that this has happened to their brother or sister. They are angry that life for them is disrupted and that things are never going to be the same. They are angry that their parents may not seem to have time for them, or care about how unhappy they are. They may be angry at all the attention their brother or sister is getting. They may feel angry with their sibling for being ill and causing all this worry for everyone in the family. They often feel guilty about their anger when their sibling is going through so much and their parents are so distressed. They may also worry that something they thought or did might have caused the cancer.

Sadness and feelings of depression: These feelings are also common for both patients and siblings. Patients may realize that they will not be able to do some things that are important to them, such as dancing or sports for a long time, if ever. They feel sad when they realize they are now different from their peers. They may feel depressed when they think about the months of treatment facing them and how it might interfere with their life. They think about the changes their body will undergo and are depressed about how they will look and how their friends may view them. They may feel a sense of hopelessness, fearing that the treatment will not work.

Siblings are sad also as they begin to realize that their brother or sister is really very sick and will need strenuous treatment. They also feel sad as they witness their parents’ distress.Younger children miss the parent who usually provides most day-to-day care when he or she is unable to return home for days or weeks after the diagnosis. Adolescents understand the risk to their sibling’s life and are depressed by a new awareness that life and health can be fragile. All young people are saddened by the necessary changes in family life that often occur.

Both patients and siblings express these normal feelings based on age, their nature, level of intelligence, maturity, and coping style. Most young people are still learning to identify what they feel and to communicate their feelings to others. They are alert to the moods and expression of feelings of those around them, particularly parents. They are not always able or willing to talk about their fear, anxiety, guilt, or sadness, but often convey their emotions through body language or behavior. They may look to parents and other key family members, however, for cues about how to deal with their troubled feelings.

If a child in the family seems to be unable to handle his feelings of sadness, feels sad all the time, is unable to be comforted and admits to feelings of suicide, those are all signs of depression that may indicate a more serious problem than a normal, sad response to cancer. Feeling extra irritable, becoming very angry very quickly, changing grades, isolating one’s self and acting very differently are all signs that should be discussed with the youngster’s doctor. Find a mental health counselor who can evaluate the child and make sure that you are doing everything possible for him or her. Your child may need to see a psychiatrist for medication or more intensive counseling.

What Helps Kids with Cancer and their Brothers and Sisters?

Here are some suggestions for helping infants and very young children with cancer.

Infants and Very Young Children (birth-3)

Patients

• soothe and comfort through being present, hold, touch, rock, music
• cuddle and hug toddlers frequently
• be with baby or child during tests and procedures
• distract with toys and colorful objects
• provide special objects (blankets, favorite stuffed animal)
• use a stuffed animal to cue baby to "safe" staff member or visitor entering room
• try to establish their crib as a "safe," treatment-free area
• keep down the number of visitors
• have siblings visit as often as feels comfortable for the situation (based on the health and the need of each to socialize)
• create a cheerful hospital room with good lighting, art, and bright colors
• maintain as much of a schedule as possible, including nap times and meals
• arrange time for play
• seek advice from recreation therapist or child life worker on strategies to use
• talk with other parents to see what works for them
• record lullabies, stories, or messages when parents cannot be with baby or child
• talk with team social worker or nurse about your own emotions in dealing with baby’s distress

Siblings

• keep the baby or child near the parents, if possible
• use relatives, nanny, or day care providers to maintain baby’s or child’s routine
• have one parent see baby or child daily
• record lullabies, stories, messages when parent cannot be at home
• offer frequent reassurance to toddlers that mommy or daddy will soon be back
• provide cuddling, hugging frequently
• arrange visits to ill brother or sister

Here are some suggestions for toddlers up to age five in dealing with the cancer experience.

Toddlers, Pre-School (3-5)

Patients

• give very simple explanations of what is happening and repeat them frequently
• provide comfort when your child is upset or fearful
• check on your child’s understanding of what is happening
• avoid trying to persuade through reasoning
• offer choices when possible
• refuse to tolerate biting, hitting, kicking, or other aggressive behavior
• teach acceptable expression of angry feelings such as talking, drawing, pillow pounding
• encourage doll play and other play to rehearse or repeat worrisome or painful experiences
• discourage whining and tantrums
• create opportunities for physical activities
• maintain a schedule for meals, naps, and play
• teach staff about what works to get child’s cooperation
• reward good behavior for cooperating with tests and procedures
• make use of team professionals to intervene with your child or teach useful strategies
• give simple explanations for a parent’s crying and sadness. For example, “I just feel a little sad and a little tired today. It makes me feel better to cry and get it all out of my system. Now I feel better.”
• don’t forget humor-laugh together when possible

Siblings

• give a simple explanation that brother or sister is sick and that the doctors are helping
• offer comfort and reassurance about the parent’s absence
• arrange for reliable daily care and maintenance of usual routines
• keep caregivers informed about family situation
• have one parent see child daily, if possible
• have child nearby (for example, use of Ronald McDonald House during hospitalization/treatment)
• remain alert to changes in behavior
• reassure child about parent’s distress and sadness
• consult with team professionals about specific concerns
• provide positive reinforcement for newfound independence and supportive role in the family

School-age children are especially sensitive to parental feedback during the time of illness.

School-Age Children (6-12)

Patients

• give explanations the child can understand about diagnosis and treatment plan
• include the child as much as possible in discussions about diagnosis and treatment
• answer all questions honestly and in understandable language, including,"Am I going to die?" (talk with cancer care team about how to answer )
• listen for unasked questions
• offer repeated reassurance that the child is not responsible for his or her cancer
• encourage youngsters to identify feelings
• teach that sadness, anger, and guilt are normal feelings and to talk about them
• teach about feeling and managing anxiety
• relieve anxiety about missing school (support any connection to the child’s teacher and classmates that is possible)
• console over missed sports and other activities
• encourage expressing feelings, especially anger, and ways how to do that
• use team professionals to intervene or provide strategies for parents to use
• allowing child to keep feelings private, if that is preferred
• suggest personal recording of thoughts, feelings through writing or drawing
• make sure there is fun and pleasure in each day
• arranging for daily physical activity, if possible
• helping the child communicate with siblings, friends, and classmates, if desired
• planning with team members for return to school
• using humor to distract
• arranging contact with other patients to see how they have dealt with diagnosis

Siblings

• provide understandable information about diagnosis and treatment
• answer all questions honestly, including, "Will he (or she) die?"
• listen for unasked questions, especially about personal health
• offer repeated reassurance that sibling is not responsible for causing the cancer
• inform teachers or coaches of family situation
• arrange for school and other activities to continue as much as possible on schedule
• support the sibling’s having fun, despite brother or sister’s illness—make sure they don’t feel guilty about it
• arrange for good child care
• plan for the daily availability of one parent
• teach about normal feelings, such as fear, anxiety, sadness, and anger
• encourage the sibling to communicate feelings
• suggest siblings write, telephone, send drawings or taped messages to patient
• accept the sibling’s unwillingness to voice feelings
• offer reassurance that the family will be fine
• explain that the parents’ distress, sadness, or crying is okay
• arrange for one family member or friend to take a special interest in each sibling

The teenage years are challenging as the teenager learns to separate from their parents. Illness forces some of that separation to be put on hold.

Adolescents (13-18+)

Patients

• offer comfort and empathy
• include the patient in all discussions with the parents and medical care team about diagnosis and treatment planning
• encourage the patient to ask questions (parents should listen for unasked questions)
• give information on normal emotional reactions to a cancer diagnosis
• provide repeated reassurance that they are not responsible for causing the cancer
• address spiritual concerns or questions such as "Why me?" (or encourage these concerns by addressed by others)
• encourage expression of feelings to someone: parents, family, or staff
• be willing to tolerate some reluctance to communicate thoughts and feelings
• encourage journal keeping
• permit private time for interaction with team professionals
• offer assurance that the patient, parents and family members will be able to manage the crisis
• address feelings of anger and frustration (even if they are not verbalized)
• use team professionals to teach new coping strategies
• encourage sharing news of diagnosis with friends and classmates
• arrange for visits of siblings and friends
• plan with team members for return to school and any restrictions that might apply
• make sure there is some fun and pleasure in each day
• use humor to deal with frustration
• facilitate contact with other adolescent patients, if desired

Siblings

• provide detailed information on the diagnosis and treatment plan
• answer all questions honestly
• arrange access to the treatment team, if desired
• involve adolescents in events around the diagnosis
• reassure all that cancer is not contagious
• offer assurance that nothing they did or said caused the cancer
• discuss spiritual concerns related to diagnosis
• encourage the expression of feelings and talk about what is normal
• arrange for the management of daily life at home
• provide assurance that the family will be able to handle the crisis
• inform teachers and coaches of the family situation
• encourage the usual involvement in school and other activities
• ask a relative or friend to take a special interest in each adolescent sibling

Like parents, patients and their siblings will find that with the help and support of those who love them they will able to handle this cancer crisis. Care teams can provide the skilled experts to assist them as needed, offering teaching, counseling, support, information, and resource materials to make the task easier.

Will Patients and Families Return to Normal After a Cancer Diagnosis?

The hope that things will get better and that tomorrow will be brighter is alive in all human beings, no matter how difficult the struggles they face. Emily Dickinson wrote:

Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.

That seems to capture how tightly we cling to hope. Young people and their families begin feeling hopeful about the future when they hear about the treatment that is available and about the remarkable progress that has been made against childhood cancers. The seriousness of the diagnosis and the issues with treatment cannot be ignored, but there is definite reason for optimism. More than 65% of children and teenagers are cured of cancer. For some types of cancer, the statistics are even better. The numbers only apply to groups of patients. When the cancer is found, each person has reason to believe that he or she will respond well to treatment and be cured. Most people believe that tomorrow will bring better times.

Hope, for some, is bolstered by faith that there is a reason for what has happened to their child and family, even if they don’t understand what it is. And, in the end, they believe that they will be given the strength they need to manage.

Here are some suggestions for strengthening hope for patients and their family members

• seek facts about the diagnosis and treatment plan
• learn about progress in treatment methods
• give each family member a role in dealing with the illness
• maintain a healthy balance between optimism and reality
• find support in prayer and/or religious faith or philosophy of life
• have confidence in one’s ability to manage whatever must be faced
• share a sense of hope with one another
• develop trust in the skills of doctors and other team members
• learn from the stories of others who have sustained hope in dealing with cancer
• find creative ways to bring pleasure to each day
• learn to tolerate the ebb and flow of hope
• appreciate the beauty and wonder present in life each day
• accept that we only have the present moment in which to live.

Additional Resources

More Information From Your American Cancer Society

We have selected some related information that may also be helpful to you. These materials may be ordered from our toll-free number (1-800-ACS-2345)

• After Diagnosis: A Guide for Patients and Families (available in Spanish)

• Because Someone I Love Has Cancer

• What Happened To You, Happened To Me

• When Your Brother or Sister Has Cancer

The following books are available from the American Cancer Society. Call us at 1-800-ACS-2345 to ask about costs or to place your order.

• Angels and Monsters: A Child's Eye View of Cancer

• Informed Decisions: The Complete Book of Cancer Diagnosis, Treatment and Recovery. Second Edition

National Organizations and Web Sites

In addition to the American Cancer Society, other sources of patient information and support include*:

American Brain Tumor Association (ABTA)
Telephone: 1-800-886-2282
Internet Address: www.abta.org

Candlelighters Childhood Cancer Foundation (CCCF)
Telephone: 1-800-366-2223
Internet Address: www.candlelighters.org

National Brain Tumor Foundation
Telephone: 1-800-934-2873 or 1-800-934-CURE
Internet Address: www.braintumor.org

National Coalition for Cancer Survivorship (NCCS)
Telephone: 1-877-622-7937 or 1-NCCS-YES
Internet Address: www.canceradvocacy.org

National Cancer Institute (NCI)
Telephone: 1-800-422-6237 or 1-800-4-CANCER
Internet Address: www.nci.nih.gov

CureSearch National Childhood Cancer Foundation (NCCF)
Telephone: 1-800-458-6223
Internet Address: www.curesearch.org

The Leukemia & Lymphoma Society
Telephone: 1-800-955-4572
Internet Address: www.leukemia-lymphoma.org

Other Publications*

For Adults

Cancer & Self-Help: Bridging the Troubled Waters of Childhood Illness, by Mark A. Chester, and Barbara K. Chesney. Published by University of Wisconsin Press, 1995.

Childhood Cancer and the Family: Meeting the Challenge of Stress and Support. By Mark A. Chesler and Oscar A. Barbarin. Publishe by Brunner/Routledge, 1987.

Childhood Cancer: Understanding and Coping by Henry Ekert… Published by Dunitz Martin, Ltd. 1989.

Childhood Leukemia: A Guide for Families, Friends & Caregivers. Third Edition by Nancy Keene. Publishe by O’Reilly, 2002.

Children with Cancer: A Comprehensive Reference Guide for Parents, by Jeanne Munn Bracken. Published by Oxford University Press, 2001.

Surviving Childhood Cancer; A Guide for Families, by Margot Joan Fromer. Published by New Harbinger Publications, 1998.

When Bad Things Happen to Good People by Harold Kushner. Published by G.K. Hall, 1982.

Your Child in the Hospital: A Practical Guide for Parents. Second Edition, by Nancy Keene. Published by O’Reilly & Associates. 1999. (Also available in Spanish)

Young People

Chemo, Craziness and Comfort, My Book about Childhood Cancer. Candlelighters Childhood Cancer Foundation. http://www.candlelighters.org.

Going to the Hospital, by Fred Rogers. Published by G.P. Putnam and Sons, 1988.

Life Isn't Always A Day at the Beach: A Book for All Children Whose Lives Are Affected by Cancer by Pam Ganz. Published by High-Five Publishing, 1996.

*Inclusion on this list does not imply endorsement by the American Cancer Society.

The American Cancer Society is happy to address almost any cancer-related topic. If you have any more questions, please call us at 1-800-ACS-2345 at any time, 24 hours a day.

References

Bleyer WA. The impact of childhood cancer in the United States and the world. CA-Cancer Journal for Clinicians. 1990; 40: 355-367.

Chesler MA, Allswede J, Barbarin OA. Voices from the margin of the family: siblings of children with cancer. Journal of Psychosocial Oncology. 1991; 9(4): 19-42.

Christ GH. A psychosocial assessment framework for cancer patients and their families. Health and Social Work. 1983, 7(1): 57-64.

Ettinger RS, Heiney SP. Cancer in adolescents and young adults. Cancer. 1993; 71(10): 3276-3280.

Lauria MM, Hockenberry-Eaton M, Pawletko TM, Mauer A. Psychosocial protocol for childhood cancer: A conceptual model. Cancer. 1996; 78(6): 1345-1356.

Overholser JC, Fritz GK. The impact of childhood cancer on the family. Journal of Psychosocial Oncology. 1990; 8(4): 71-85.

Ross JW Understanding the family experience with cancer. in Stearns NM, Lauria MM, Hermann JF, Fogelberg PR, eds., Oncology Social Work: A Clinician’s Guide. Atlanta, GA, 1993: 199-236.

Revised: 10/18/2005