When a Child is Diagnosed with Cancer: How Life Changes Page 3

Life does not prepare parents for a diagnosis of cancer in children. Emotionally, the leap from being a parent of a healthy child to having a child with cancer may simply seem unfathomable. The diagnosis may come as a complete shock or it actually may be somewhat of a relief, depending on how difficult the disease was to diagnose and the child’s symptoms prior to diagnosis. Initially the whole family may feel devastated, as if the worst thing that could have happened, has happened. After learning the diagnosis, some parents may feel they are no longer in control of their lives. A new rhythm will emerge in the family, which will take time to establish.

Family life can change quickly after a child is diagnosed with cancer. There is little time for parents to sit back and think about how they will cope, as the child may need to begin medical treatment immediately. But it is not uncommon for parents to wonder "Why is this happening?" to their family.

Some parents tend to blame themselves for their child’s cancer. It is not uncommon for a parent to feel that there was something he or she did or didn't do that caused the child’s illness. Mothers may worry that they did something wrong during their pregnancy that resulted in the disease. It is important to understand that parents are not responsible for their child’s cancer.

Beyond dealing with their own questions, parents must find age-appropriate ways to discuss the diagnosis and treatment with their child. Many other people in the parent and child’s support network will also need and want to know about the diagnosis and treatment plan. Communicating this information can be very taxing. It may ease the burden to rely upon close friends and family members to share this information with others.

Parents may feel they are beginning to regain some control after the diagnosis, as a treatment plan is developed. Some suggestions:

Closely review the medical "protocol" or treatment plan, asking questions until the child’s illness and required treatment are understood.
Develop relationships with members of the treatment team who are there to care for the child as well as to educate and support the family.
It's a good idea for parents to identify the people in their own support system who can help them to get through the initial phase of the illness.
Parents are encouraged to recognize that their reactions, emotions and concerns are similar to those of others who have had the same experience, and try to accept them. These responses may include anger, fear, guilt, anxiety, sadness, and confusion.
Assistance is available from people who can help parents understand the child's illness and the emotional response to it. Such people include social workers, psychologists, nurses, child life specialists, and clergy.
Help with practical and financial resources is available from the social workers, parent advocates, account managers (billing department at the hospital) or insurance company, and patient representatives. These people can also assist with accessing information from the Internet regarding financial resources and educational materials.

When children are first diagnosed with cancer, they often require hospitalization and an initial period of intensive treatment. If they need to remain in the hospital, or come to the hospital frequently as outpatients, parents may need to renegotiate their work schedules. Ultimately, the parent will decide whether to continue working, or if there are two parents, whether one will stay with the child. It may be possible to identify other family members or friends who can help as well. Often, people will want to help, but may not know how to. Parents will want to be as clear as possible in order to help themselves and others.

A child’s school routine will be disrupted by a diagnosis of cancer and the necessary treatment. Whether a child is tutored at home, or absent from school for treatment periods, it is important for parents to maintain contact with teachers and classmates. It can be emotionally important for a child to understand that he or she will be returning to school, and that education is still important. Family routines around school, work, and recreational activities may need to change to accommodate the child’s treatment schedule. Families often need to identify and engage others to help maintain academic and after-school activities.

Relationships with friends may change shortly after cancer diagnosis. Surprisingly, people least expected to help may make themselves available in whatever ways are needed. Alternatively, some people who would be expected to help may distance themselves. Some simply do not know what to do or say, and may withdraw because of their own discomfort.

Children and their families can experience a sense of loss of what they "expected out of life" before the child had cancer. Psychosocial team members can help children and family members express and deal with these feelings by identifying and encouraging the use of their personal strengths in coping with the illness, while offering new alternatives to supplement existing coping skills.

After learning to live with a child who has cancer, some parents come to feel that they have learned a tremendous amount about life and that their families are emotionally much closer than before the diagnosis. They no longer take things for granted and they often see a value in living every day. In the beginning however, the priority is to "get through" each day and to do what has to be done on the road as they care for their child.

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