When your child has cancer: helping yourself

When you need help

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 has local chapters. Treatment center staff may be able to help you locate such a group.

Issues with 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.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. 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 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.

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