Rare Tumors Patient & Family Handbook

Use this space to write down some additional questions.

n 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. n HOW CAN I HELP MY CHILD? As a parent, you will often notice changes in your child during treatment for cancer. These changes or symptoms can make you feel even more helpless. It is important to remember that, in spite of changes on the outside, your child is still the same person on the inside. Hair loss and other changes in body appearance are temporary. They often bother the adults involved much more than the child or their siblings and friends. All of your feelings about what your child is going through during treatment for cancer must be balanced by remembering that treatment provides an opportunity to cure the disease and to have your child go on to live a full and meaningful life. It is important to reinforce to your child that nothing he or she did or said caused this disease. Telling your child that your angry or sad feelings are directed at the cancer, not at him or her, will help preserve honesty and closeness in your relationship. Don’t hesitate to ask your child to express his or her feelings, and don’t be afraid to explain what is happening and why.

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