Coping and support
When your child is diagnosed with cancer, it's common to feel a range of emotions — from shock and disbelief to guilt and anger. 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 need. Find out enough about retinoblastoma to feel comfortable making decisions about your child's care. Talk with your child's health care team. Keep a list of questions to ask at the next appointment.
Visit your local library and ask for help searching for information. Consult the websites of the National Cancer Institute and the American Cancer Society for more information.
Organize a support network. Find friends and family who can help support you as a caregiver. 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.
When you're with your child, your friends and family can help out by spending time with your other children or helping around your house.
Take advantage of resources for kids with cancer. Seek out special resources for families of kids with cancer. Ask your clinic's social workers about what's 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's happening to them as they undergo cancer treatment. 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 through his or her treatment. Some hospitals have recreation therapists or child-life workers who can give you more specific ways to help your child cope.
In most cases, doctors aren't sure what causes retinoblastoma, so there's no proven way to prevent the disease.
Prevention for families with inherited retinoblastoma
In families with the inherited form of retinoblastoma, preventing retinoblastoma may not be possible. However, genetic testing enables families to know which children have an increased risk of retinoblastoma, so eye exams can begin at an early age. That way, retinoblastoma may be diagnosed very early — when the tumor is small and a chance for a cure and preservation of vision is still possible.
If your doctor determines that your child's retinoblastoma was caused by an inherited genetic mutation, your family may be referred to a genetic counselor.
Genetic testing can be used to determine whether:
- Your child with retinoblastoma is at risk of other related cancers
- Your other children are at risk of retinoblastoma and other related cancers, so they can start eye exams at an early age
- You and your partner have the possibility of passing the genetic mutation on to future children
The genetic counselor can discuss the risks and benefits of genetic testing and help you decide whether you, your partner or your other children will be tested for the genetic mutation.