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Coping and support
By Mayo Clinic staffWhen your child is diagnosed with cancer, it's common to feel a range of emotions — from shock and disbelief to guilt and anger. In the midst of this emotional roller coaster, you're expected to make decisions about your child's treatment. And while you're trying to sort it all out, friends and family may be calling for updates and to find out if they can help. It's overwhelming, to say the least. Everyone finds his or her own way of coping with stressful situations, but if you're feeling lost, you might try to:
- Gather all the information you can. Learn all you can about retinoblastoma. Talk with your health care team. Keep a list of questions to ask at your child's next appointment. Visit your local library and ask a librarian for help searching for information. Consult the National Cancer Institute (NCI) and the American Cancer Society (ACS) for more information. Both organizations can provide you with information through their Web sites or toll-free telephone information lines. Call the NCI at 800-4-CANCER (800-422-6237). Call the ACS at 800-ACS-2345 (800-227-2345). Knowing more about your child's condition may make you more confident when choosing treatment options.
- Organize a support network. In the coming weeks and months, your child will undergo a number of tests and procedures that will be time-consuming and may require traveling to a specialized medical center. If you want to be with your child through this time, you may have to take time off from work. Some people will be able to organize this with their employers. For others, time off from work and time without income isn't possible. Find friends and family you can count on in this situation. Loved ones can accompany your child to doctor visits or sit by his or her bedside in the hospital when you can't be there. If you can take time away from work to be with your child, your friends and family can help out by spending time with your other children or helping around your house. Don't hesitate to ask for help.
- Take advantage of resources for kids with cancer. Seek out special resources for families of kids with cancer. Social workers and other members of your health care team can tell you what programs are available. Support groups for parents and siblings put you in touch with people who understand what you're feeling. Your family may be eligible for summer camps, temporary housing and other support.
- Maintain normalcy as much as possible. Small children can't understand what is happening to them as they undergo treatment for cancer. To help your child cope, try to maintain a normal routine as much as possible. Try to arrange appointments so that your child can have a set nap time each day. Have routine mealtimes. Allow time for play when your child feels up to it. If your child must spend time in the hospital, bring items from home that help him or her feel more comfortable. Ask your health care team about other ways to comfort your child during treatment. Some hospitals have recreation therapists or child-life workers who can give you more specific ways to help your child to cope.
