Rare Tumors Patient & Family Handbook

What treatment choices are available? What treatment do you recommend, and why? What risks or side effects does the recommended treatment have? What should we do to prepare for treatment? What is my child’s outlook for survival? What are the chances of the cancer coming back? If my child’s cancer returns, are other treatment options available?

Use this space to write down some additional questions.

ARE MY FEELINGS NORMAL? WHAT CAN I DO ABOUT THEM?

Hearing that your child has cancer can be shocking and overwhelming. At first you may not believe it, or you may hope that the diagnosis is wrong. However, the changes you see in your child and the experience of being in the hospital and beginning treatment will no doubt confirm the reality of your child’s situation. Many family members feel that they are somehow responsible for the child’s disease, or they feel guilty that they were not able to detect it sooner. Remember that this disease was not caused or triggered by anything anyone did to the child, something the child ate, or anything that happened during pregnancy. It also was not triggered by the child’s activity in sports. In addition to shock and guilt, you and your family probably will feel anger and sadness. Even the youngest family members are likely to be affected. These feelings are normal, and each family member will express them in different ways and at different times. It can be very difficult to feel so many strong emotions all at once. Talking honestly with each other about feelings, reactions, and questions will help everyone in the family. It may seem difficult to talk to friends, family, or even medical staff, but expressing your feelings will help you cope with this situation. Your child will benefit if family members continue to show their caring through support and communication.

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Association of Pediatric Hematology/Oncology Nurses (APHON)

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