Guidelines for Parents of a Child with Sarcoma |
An ESUN Article
1. Your child has cancer. There is no fear greater than the fear we feel if our children's lives are threatened. You must recognize your fear and how it compromises your ability to ask the right questions, hear the answers, and make decisions. Acknowledge your fear, express it. You may think that by concealing your concern you are protecting your child. Children have radar. They can sense your feelings. You aren't hiding anything.
2. It's okay to use the word cancer. You are going to take your child to see a cancer specialist. They will see children with no hair, maybe missing a limb. Other children will talk to your child. They will hear the word. It is much better that they hear the word from you. You will be able to reassure them that they have something serious, but you will get them the treatment that will make them well.
3. It is not your fault. Your child didn't get cancer because of something you did or something you failed to do. That's not a guess. Epidemiologists are specialists in tracking the causes of diseases. They have studied thousands of families who have a child with cancer. There is no link to where you live, what you eat, what vaccines you did or didn't give your child, or your family history. Our best understanding of childhood cancer is that it happens randomly, just by bad luck.
4. You are going to need help. Lots of help. Getting your child through treatment for sarcoma is a full time job. You may already have a full time job. You may have other children. They still need to get up, eat breakfast, go to school, see friends, play soccer, do homework, go to pediatrician checkups. You cannot do this alone. Reach out to extended family, friends, any network you have. Accept help. You need to preserve your own strength for your child.
5. Find out about groups that can help you with expenses. There will be a lot of expenses that are not covered by insurance. Travel expenses and parking at the hospital. Co-payments for drugs. Child care for the other children. Stays at a Ronald Macdonald House. Ask to work with a social worker or patient representative to explore groups and agencies that can help.
6. Be prepared to be a partner in your child's care. No one knows your child as well as you do. You are the advocate for your child but in partnership with the doctors, nurses, and all the other staff. So many different people will be involved in the care of your child that it is inevitable that you will find some inconsistencies. Don't play "gotcha!" If you hear something that sounds wrong, ask questions, and relate your understanding. You have not only the right but the responsibility to be sure that everything goes right for you child. Just be sure that you remain a partner with your clinicians.
7. Lots of people are going to give you advice. Some of it will be good and some of it will be bad. Thank them all for their concern and discuss it with your doctors and nurses.
8. You must be able to trust your doctors and nurses. They are going to ask you to let them perform surgery on your child, give your child chemotherapy, administer radiation treatments to your child. You must have complete confidence in the people caring for your child. If you don't feel comfortable, if it doesn't feel right, you must find a way to fix it. Sometimes that may mean changing doctors. That's OK. Sometimes the chemistry between families and doctors is just wrong. Good doctors will recognize that it is critically important for you to trust your medical team and will understand if you choose to shift your care. This is about your child, not about the doctor.
9. Ask lots of questions. Good doctors and nurses will welcome your questions. Just remember that there are good times and not so good times to ask lots of questions. Sometimes everyone is very busy and focused on getting things done. If you know that you have a lot of questions and think it will take more time, ask for a meeting at a time when your doctors and nurses are not distracted by the demands of patient care and have time to share with you.
10. Consider talking to other parents in the same situation. Some parents are very private and don't want to discuss their fears and concerns with others. But the only people who can really understand what you are going through are other parents with a child with cancer. They may have learned lessons that they can share with you that will help you. There are formal support groups and informal chances to talk when you meet them at the hospital or at a Ronald MacDonald House. You may find it very helpful to share your concerns with someone else who is wrestling with the same problems as you.
Editor's Note: In addition to local sarcoma support groups and resources, there are several active online support groups for specific childhood sarcomas. These online support groups allow parents and patients to connect with a large number of people with similar experiences, providing valuable information and support.
V5N6 ESUN. Copyright © 2008 Liddy Shriver Sarcoma Initiative.