Coping with the diagnosis

Learning that your child has cancer usually gives parents a feeling of their world being turned upside down. Everything in their life may suddenly feel out of control. This is because you did not choose for your child to have cancer. Your initial thoughts may be "How could this have happened to my child?" and "How will we get through this?"

A cancer diagnosis is shocking and overwhelming. However, prognosis of childhood cancer continues to improve, and the chance of being cured continues to increase.

What is grieving?

Grieving is a normal response to a loss. The loss can include the loss of your previously healthy child, the loss of your normal daily routine, the impact of the diagnosis on other family members and the financial impact of the diagnosis. The grieving process varies from person to person in terms of the order in which one experiences the stages of grief, as well as the time it takes to go through the stages of grief. The child with cancer, the parents, siblings and other family members, will all experience grief. Grief is usually divided into five stages:

• Denial - Denial is a stage where people try to believe that the cancer diagnosis is not happening to them, their child or their family. One may feel numb, or in a state of shock. Denial is a protective emotion when a life event is too overwhelming to deal with all at once.
• Anger - Anger is a stage in which you understand the cancer diagnosis and are very upset and angry that it has happened in your family. One of the best ways of dealing with bursts of anger is to exercise or participate in another type of physical activity. Talking with family and friends, other parents who have a child with cancer and the hospital staff, may also be helpful. The child also needs to be able to express their anger by therapeutic play, talking to other children, drawing pictures of how they feel or writing in a journal.
• Bargaining - Questioning God, asking "Why my child?" and "What did we do to deserve this?" are common questions in this stage. It is normal for parents to make bargains with themselves or God, in hopes that this will make the cancer diagnosis go away. Guilt is a primary emotion during this stage. Searching for something that you personally did, which could have contributed to the cancer in your child, is all part of bargaining. Parents tell themselves or God that they promise not to do something they previously did (such as arguing with family members), or to start doing something they have not done (such as going to church regularly), in exchange for their child's cancer recovery. It is important to remember that there is nothing that you or your child did which contributed to the cancer. It is no one's fault.
• Depression or sadness - This is a stage in which the diagnosis of cancer can no longer be denied and parents and children may feel a profound sense of sadness. This is normal. It can be accompanied by physical changes such as trouble sleeping, or excessive sleeping, changes in appetite, difficulty with concentrating on simple daily activities or feeling a constant fear that someone else in the family will be diagnosed with cancer. It is important to talk about depression with a healthcare professional such as a social worker, or counselor, or meet with a support group to help you cope with these feelings.
• Acceptance - Acceptance is a stage in which you have accepted the cancer diagnosis and are at a point where cancer has been incorporated as part of your life. You have made an adjustment to your child's illness. This does not mean that you will never feel other emotions, but usually families find that they are better able to manage their lives overall upon reaching this stage.

Going through the grieving process is the best way to cope with a cancer diagnosis. By giving yourself, your child and your family permission to grieve, you will be able to cope.

Coping with the diagnosis

Some practical things that you can do to help during this time include the following:

• Learn as much as possible about your child's disease. At times, ignorance or a lack of understanding is your worst enemy. Arm yourself with information in order to lessen frustration. Do not hesitate to ask questions about your child's disease. You may wish to keep a notebook with all of the medical records and information about your child's diagnosis. Sometimes, a parent can be too numb or too upset when at the hospital with their child and realize later that they forgot everything the physician had said.
• Keep a journal of your feelings about your child's disease and the impact on your life. As time goes on, you will be able to look back and see that things are improving and that you are moving forward, even though at times it may not seem so.
• Learn about your health benefits so that you understand what expenses will be covered by insurance.
• Continue doing your usual, daily activities. You will still have grocery shopping, laundry and going through the mail to do on a daily or weekly basis. Having some of these "regular" activities will help you cope and feel more in control. Using a cell phone or beeper to communicate with the hospital is one way to accomplish these activities and still be in touch with what is happening with your child.
• Take care of your family relationships. Although your primary focus is on your child with cancer, it is important to also spend time as you normally would with your other children and your spouse. It is healthy to have fun together, even when a child in the family has cancer. Relieving stress and strengthening family relationships will allow you to cope better with your child's disease.
• Utilize the support groups in the area, as well as national support groups and their resources. Find out about supportive services available at the hospital to help you cope, such as the availability of social workers and meeting with other families. Do not be afraid to ask for help. Each family's need for support is unique. Friends and family members will often ask "Is there anything I can do to help?" Consider saying "yes" to this question and ask them to pick up your groceries, help with the laundry or housecleaning, pick up your other children from their extracurricular activities or make dinner. "Assigning" a friend or family member something to do to help you will also help them feel like they are contributing.
• Avoid emotionally draining situations. Sometimes, well-meaning friends and family members will say the worst possible thing at the time of a cancer diagnosis. They truly want to help or be supportive, but sometimes do not know how to respond. Their words may hurt you or disappoint you, even though that was not their intention. You must realize that people will not know what your needs are unless you tell them. Sometimes, it is simply easier to be forthright and tell someone "I would just like you to sit quietly with me and keep me company" or "I need to spend some time alone right now." Do not be afraid to express your needs during this time.

Other parents or acquaintances may want to talk to you about their experiences with cancer. They may believe that they are being helpful to you, but instead may be making your situation feel even more overwhelming. It is important for you to avoid these discussions if they are not helping you. It is healthy to be "selfish" and ask for what you need, as well as what you do not need during this time.

• Share what you have learned. You will have important knowledge and skills that you learn as you experience your child's illness. You could help other parents and their families by sharing your experiences in a support group or other setting.

The following is a list of suggestions for patients, parents and siblings that may help each individual cope with their emotions, depending upon the age of the child with cancer and the age of the siblings:

Infants and very young children (birth to 3 years of age)

• For patients:

  • Holding.

  • Touching.

  • Rocking.

  • Soft music.

  • Hugging.

  • Cuddling.

  • Distracting with toys or colorful objects.

  • Creating a cheerful, comfortable hospital room.

  • Having siblings visit.

  • Keeping their regular schedule for sleeping and feeding.

• For siblings:

  • Providing cuddling.

  • Hugging frequently.

  • Arranging visits to ill brother or sister.

  • Keeping them near parents, if possible.

  • Using relatives, friends or a daycare center to maintain their usual daily routine.

  • Having one parent spend time with them daily.

  • Recording lullabies, stories, messages when parent cannot be at home.

  • Offering frequent reassurance to toddlers that mommy or daddy will soon be back.

Toddlers, pre-school (3 to 5 years of age)

• For patients:

  • Giving very simple and repeated explanations for what is happening.

  • Providing comfort when child is upset or fearful.

  • Checking on child's understanding of what is happening.

  • Offering choices when possible.

  • Teaching acceptable expression of angry feelings.

  • Maintaining a normal daily schedule for feeding and sleeping.

  • Giving simple explanation for parent's distress, sadness or crying.

• For siblings:

  • Giving a simple explanation that brother or sister is sick and that people are helping.

  • Offering comfort and reassurance about parent's absence.

  • Arranging for reliable daily care and maintenance of usual routines.

  • Having one parent see child daily, if possible.

  • Remaining alert to changes in behavior.

  • Reassuring child about parent's distress or sadness.

School-age children (6 to 12 years of age)

• For patients:

  • Offering repeated reassurance to your child they are not responsible for the cancer.

  • Teaching that sadness, anger and guilt are normal feelings.

  • Allowing your child to keep feelings private, if that is preferred.

  • Suggesting personal recording of thoughts, feelings through writing, drawing.

  • Arranging for physical activity, when possible.

  • Providing explanations your child can understand about diagnosis and treatment plan; including your child, when appropriate, in discussions about diagnosis and treatment.

  • Answering all questions honestly and in understandable language, including, "Am I going to die?" (talk with cancer care team about how to answer).

  • Listening for unasked questions.

  • Facilitating communication with siblings, friends and classmates, if desired.

  • Arranging contact with other patients to see how they have dealt with diagnosis.

• For siblings:

  • Teaching about normal feelings of fear, anxiety, sadness or anger.

  • Encouraging sibling to communicate feelings; suggesting sibling write, telephone, send drawings or taped message to patient.

  • Providing understandable information about diagnosis and treatment.

  • Answering all questions honestly, including, "Will I die?".

  • Listening for unasked questions, especially about personal health.

  • Offering repeated reassurance that sibling is not responsible for causing the cancer.

  • Informing teachers and coaches of family situation.

  • Arranging for school and other activities to continue on schedule.

  • Supporting sibling's having fun, despite brother or sister's illness.

  • Planning for daily availability of one parent.

  • Explaining that parents' distress, sadness or crying is okay.

Adolescents (13 to 18 years of age and older)

• For patients:

  • Giving information on normal emotional reactions to a cancer diagnosis.

  • Encouraging expression of feelings to someone: parents, family or staff.

  • Tolerating any reluctance to communicate thoughts and feelings.

  • Encouraging journal keeping.

  • Providing repeated reassurance that they are not responsible for causing the cancer.

  • Being included in all discussions with parents about diagnosis and treatment planning.

  • Being encouraged to ask questions (parents should listen for unasked questions).

  • Addressing spiritual concerns about "Why me?".

  • Permitting private time for interaction with team professionals.

  • Offering assurance that parents and family members will be able to manage crisis.

  • Encouraging sharing news of diagnosis with peers and classmates.

  • Arranging for visits of siblings and friends.

  • Facilitating contact with other adolescent patients, if desired.

• For siblings:

  • Involving adolescent in events around diagnosis.

  • Reassuring that cancer is not contagious.

  • Offering assurance that nothing they did or said caused the cancer.

  • Providing detailed information on diagnosis and treatment plan.

  • Answering all questions honestly.

  • Arranging access to treatment team, if desired.

  • Discussing spiritual issues related to diagnosis.

  • Encouraging expression of feelings.

  • Arranging for management of daily life at home.

  • Providing assurance that family will be able to handle crisis.

  • Informing teachers and coaches of family situation.

  • Encouraging usual involvement in school and other activities.

  • Asking relative or friend to take a special interest in each adolescent sibling.

The various members of the cancer team can assist your family, as needed. The seriousness of a cancer diagnosis and the difficulties of treatment cannot be forgotten. There is good news. In looking at groups of patients, more than 70 percent of children and adolescents are cured of cancer. The statistics are even better for some specific types of cancers.