Rhabdomyosarcoma Patient & Family Handbook

parent to avoid upsetting the parent, which is OK. Don’t be afraid to ask your child about their feelings—it may be what your child is waiting for. Keep in mind that your child is still a child first in spite of the disease. As children go through treatment, they still have all the needs of a growing child. All children need love, attention, the opportunity to learn and try new skills, and limits. Do not avoid talking to your child about therapy. Use explanations that your child will understand. Children tolerate treatment better if they understand it and are allowed to help make decisions about their care, when appropriate. The things children can imagine on their own are often more frightening that what is actually happening. As a parent you may find it difficult to watch your child go through treatment. Your child may sometimes seem sicker during treatment than before treatment. Your feelings about what your child is going through must be balanced with the knowledge that treatment provides the chance of curing the disease and making it possible for your child to live a full and meaningful life. It’s difficult to accept how cancer and treatment change your child, but most of these changes, like hair loss, are temporary. Despite outward changes, your child is still the same person on the inside. Most healthcare centers have a psychosocial team that can support you and your child through their diagnosis and treatment.

IS MY CHILD’S DIET IMPORTANT DURING TREATMENT? Yes, your child’s diet is important. Research has shown that well- nourished children tolerate treatment better and experience fewer treatment delays. Nausea and vomiting can be a distressing side effect of treatment, and your child’s healthcare team will prescribe medications to help prevent and treat these side effects. Your child may have difficulty eating normal meals during treatment. Foods that are appealing to your child will be tolerated better. Offer foods that are high in calories, protein, and carbohydrates. Small frequent meals are often better tolerated than three larger meals. When possible, choose more nutritious foods. Your child’s nurse or dietitian can help you put together a list of possible food choices.

If steroid medications, such as prednisone or dexamethasone (Decadron®) , are part of the treatment, your child’s appetite will likely be increased. These medicines may make your child feel constantly hungry and crave unusual foods. Your child may want one particular food constantly. Try to keep healthy snacks on hand. Steroids may cause your child to gain weight and develop a round face and puffy appearance, but these side effects are temporary. It is important to offer your child fluids to drink frequently throughout the day so that dehydration is avoided. Signs of dehydration include decreased urine output, dizziness, and a dry mouth. Multivitamins, herbs, and other supplements should be avoided unless approved by your child’s healthcare team because they can interact with your child’s treatment. Please ask your healthcare team if you are considering having your child take any of these types of supplements. A dietitian may be member of your child’s healthcare team. Dietitians are trained in the calorie and nutritional needs of children. The dietitian can provide you with information regarding your child’s dietary needs and give you ideas about how to meet these needs during treatment. Your child’s healthcare team will monitor your child’s nutritional status, height, and weight during and after treatment to try to prevent problems. When a concern about nutrition arises, your child’s healthcare team will discuss with you the ways to manage and improve your child’s nutrition.

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