Neuroblastoma Patient & Family Handbook

n INTRODUCTION Hearing that your child has cancer is shocking and overwhelming. At first, you may not believe it, or you may hope the diagnosis is wrong. However, the reality of the situation will be confirmed as you see the changes in your child and experience being in the hospital and beginning treatment. Educating yourself on your child’s diagnosis, treatment plan, and possible side effects and familiarizing yourself with the members of your child’s healthcare team and available resources may help ease some of these feelings. n WHAT IS NEUROBLASTOMA? Neuroblastoma is a rare childhood cancer that develops from nerve cells that are found throughout the body. Often, the tumor appears from branches of nerves that extend from the spinal cord. These branches reach many areas of the body, so tumors can be found in many different locations. In more than half of the cases of children with neuroblastoma, the tumors are found in the abdomen or belly and usually involve the adrenal gland, which sits on top of the kidney. Neuroblastoma also can be found in the head, chest, neck, pelvis, bone, and bone marrow.

n WHAT ARE SOME SIGNS AND SYMPTOMS OF NEUROBLASTOMA? The symptoms of neuroblastoma depend upon the location of the cancer. For example, if the tumor is in the abdomen, the child’s belly may appear enlarged or bloated, and he or she may complain of or show signs of abdominal pain, constipation, or diarrhea. If the cancer has spread to the bones, there may be bone pain that can result in the child’s inability or refusal to walk or use a certain arm

or leg. If tumor cells affect the bone(s) around the eyes, it often appears as if the child has a black eye. Skin tumors may occur and appear as blue or purple hardened areas under the skin that can be seen or felt. Some general signs of neuroblastoma may be loss of appetite (usually without significant weight loss), tiredness, minor aches and pains, unexplained fevers, bleeding, bruising, and difficulty breathing if the tumor is putting pressure on the lungs. More often, symptoms are subtle and difficult to put together, resulting in neuroblastoma not being diagnosed until the disease is in an advanced stage.