Parent and Family Handbook

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  • 1.Helpful Information for Families of Children with Cancer or Blood Related Disorders

2. CONTRIBUTORS: Current Edition (2006): Charlotta Marshall, RN, MSN Hematology/Oncology Family Handbook Project Leader DMC-Childrens Hospital of Michigan Ibrahim Ahmed, MD Kanta Bhambhani, MD Denise Cain-Jones, LMSW Sandra Conoff, RN, CPN Jan Cottrell, RN, MSN Cathy Davey, RN, CPN May Faraon, RPh Beverly Hindson, IHM Veronica Kaschalk, RN Jennifer Lesnek, RN Rhonda McDougall, RN, MSN, CPNP Kathy Miller, RN, CPON Kathy L. Moore, RN Michelle Murray, RD, CSP Karel OBrien, LMSW Bethany Russell, CLS Michelle Aquino-Sepanak, RN, CPN Indira Warrier, MD Elena Zachary, RN, CPN, CPON Building Blocks and Siblings of Hospitalized Children Created and Written by: Amanda Hays, CCLS Illustrations by: Microsoft Clip Art 2003 Previous Editions (1996, 1998, 2001, 2004): Mindi Botterill, RN, BSN Karen Couser, ACSW Debbie DeCamillo, RN, BSN Maribeth Guys, RN, MSN Janet Kaplan-Swimmer, RN, BSN Madelyn Torakis, RN, MSN Debbie Roarty, RN, BSN Carolyn Scheer, RN, BSN Stephanie Tatum, RN, BSN 1996 (Revised: 1998, 2001, 2004) 2007 Childrens Hospital of Michigan 2 3. TABLE OF CONTENTS TABLE OF CONTENTS 3-7 INTRODUCTION 8 CHILDHOOD CANCER 9-14 Leukemia 15 Brain Tumors 16 Lymphoma 17 Neuroblastoma 18 Wilms Tumor 19 Rhabdomyosarcoma 20 Bone Tumors 21 Retinoblastoma 22 HOSPITAL INFORMATION Hematology/Oncology Services 23 Childrens Oncology Group 24 Neuro-Oncology Clinic 25 Bone Marrow Transplant 25 Sickle Cell Center 26 HEMATOLOGY/ONCOLOGY STAFF Pediatric Hematology/Oncology Physician 27 Nurse Practitioner 27 Clinical Nurse Specialist 27 Nurse Clinician 28 Hospital Nurse 28 Hematology/Oncology Pharmacist 29 IV Team 29 Social Worker 30 Child Life Specialist 31 Phlebotomist 31 Pastoral Care 32 Psychologist 33 Dietician 33 DIAGNOSIS How is Cancer Diagnosed? 34 Cancer Staging for Solid Tumors 35 Surgery 36 Radiation Therapy 37 Chemotherapy 38 Central Lines 39 Port A Cath 40 3 4. TREATMENT Protocols 41 Informed Consent 41 Roadmaps 42 BONE MARROW TRANSPLANT (BMT) / STEM CELL TRANSPLANT (SCT) 43-44 DIAGNOSTIC TESTS Getting Ready for Tests and Procedures 45 After the Test 46 X-Rays 47 Ultrasound 48 Computer Assisted Tomography (CAT scan) 49 Magnetic Resonance Imaging (MRI) 50 Nuclear Medicine 51-52 Positron Emission Tomography (PET scan) 53 Cardiology 54 Audiology 55 Electroneurodiagnostics 56 Pulmonary 57 Laboratory 58-60 Bone Marrow Aspiration (BMA) / Bone Marrow Biopsy (BMBx) 61 Lumbar Puncture (LP) 62 PATIENT CARE Blood Counts and What They Mean 63-64 White Blood Cells 65-66 Red Blood Cells 67 Platelets 68 Infection 69 Preventing Infections 70 General Signs of Infection 71 Bacterial Infection 72 Opportunistic Infection 73 Viral Infection 73 Chicken Pox 74 Shingles 75 Common Side Effects of Chemotherapy 76 Digestive System Effects 76 Nausea and Vomiting 77 Constipation 78 Diarrhea 78 Hair Loss (Alopecia) 79 Weight Gain / Loss 80 Bone Marrow Effects 81 NUTRITION 82 4 5. CARE AT HOME Fatigue, Activity and Rest 83-84 Appetite 85 Fluids and Dehydration 86 Exposure to the Sun 87 Taking Your Childs Temperature 88 Medications 89 Common Problems 90 SPECIAL CARE (add this title to the top of p. 91 Transfusions 91 Red Blood Cell Transfusions 91 Platelet Transfusions 91 Transfusion Reactions 91 G-CSF (Granulocyte Colony Stimulating Factor) 92-93 IVIG (Intravenous Immune Globulin) 94 Pain 95 Procedure-Related Pain 96 Treatment-Related Pain 96 Disease-Related Pain 97 Conscious Sedation 98 Deep Sedation 98 IMMUNIZATIONS 99 TREATMENT TOXICITIES AND LATE EFFECTS OF TREATMENT 100 Central Nervous System (CNS) 100 Endocrine 100 Cardiac 101 Respiratory Function 101 Musculoskeletal 102 Auditory 102 Gastrointestinal Function 102 MEDICAL EMERGENCIES 103 POSITIVE COPING Family Changes 104 Discipline 104 Limit Setting 105 Behavior Problems and Temper Tantrums 105 EFFECTS OF A CANCER DIAGNOSIS ON DEVELOPMENT Caring for your Child 106 Cancer Myths 107 HAIR LOSS 108 5 6. MEDICAL INSURANCE COVERAGE Basic Coverage 109 Lab Work and Tests 110 Chemotherapy and Prescription Drugs 111 Home Care Services / Equipment 111 Helpful Hints 112 Childrens Special Health Care Services (? needed, as no explanation given) 112 SCHOOL 113 Homebound Teaching 114 Staying in Touch with the School and Classmates 115 School Re-Entry 116 Helping Children with Homework 117 Special Education 118 Helping Siblings in School 119 WHEN CURATIVE TREATMENT IS NO LONGER AN OPTION 120 BUILDING BLOCKS Basic Development of Infants 121 Issues Hospitalized Infants Face 122 Helping Your Infant Cope with Hospitalization 123 Toddlers Basic Development of Toddlers 124 Issues Facing Hospitalized Toddlers 125 Helping Your Toddler Cope with Hospitalization 126 Basic Development of Preschoolers 127 Issues Facing Hospitalized Preschool Age Children 128 Helping Your Preschooler Cope with Hospitalization 129 Basic Development and Issues of School-Age Children 130 Issues Facing Hospitalized School-Age Children 131 Helping Your School-Age Child Cope with Hospitalization 131 Basic Development of Adolescents 132 Issues Facing Adolescents in the Hospital 132 How Parents Can Help Adolescents 133 Tips for Adolescents 134 RESOURCES / INTERNET SITES 135 SIBLINGS OF HOSPITALIZED CHILDREN 136-137 MEDICATIONS 138-139 6 7. GLOSSARY 140-147 Life is About Living 148 7 8. INTRODUCTION A hematology/oncology staff is a dedicated team of health care professionals who have chosen to specialize in pediatric hematology/oncology. The team provides both medical and emotional support to children with hematology/oncology diagnoses during and after treatment. This patient and parent handbook was written by the hematology/oncology staff for the purpose of helping you learn about your childs illness and treatment. Adjusting to your childs diagnosis will take time. You may feel overwhelmed by the information given to you at the time of diagnosis and may have many questions. By providing this handbook, we hope to assist you in caring for your child. Your participation in your childs care is vitally important. The more comfortable you are with the changes in your lives, the more helpful you will be in properly caring for your child. Use this handbook as a guide to help care for your child. This book is not meant to be a complete source of information regarding your childs illness, but rather a guide for answering some of the questions you may have. 8 9. CHILDHOOD CANCER As a childhood disease, cancer is rare. According to the National Cancer Institute, the incidence of childhood cancer has increased from 12 in 100,000 in 1980, to 13 in 100,000 in 1990. In 1995, an estimated 8,000 new cases were diagnosed in the United States, and approximately 1,600 children died from cancer. Each year, new cases of childhood cancer are diagnosed. The most common types of cancers affecting children are leukemia, neuroblastoma, brain tumors, lymphoma, osteosarcoma, Ewings sarcoma, Wilms tumor, retinoblastoma, and rhabdomyosarcoma. Although cancer is still the leading cause of death from disease in children from the ages of 1 to 14, fewer deaths are occurring in several types of childhood cancer including leukemia, Wilms tumor, Hodgkins lymphoma, non-Hodgkins lymphoma, and osteosarcoma. Improvements in early detection, advances in treatments using new medicines, and new methods of reducing side effects have all contributed to the increased number of children surviving cancer and being cured (five years off treatment, disease free). It is estimated that 75-90% of children successfully treated in the 1990s will become long-term survivors. 9 10. Your child has been diagnosed with a Hematology/Oncology illness; the pediatrician has referred you to a Hematologist/Oncologist. A Hematologist/Oncologist is knowledgeable about blood diseases and cancer. This specially trained doctor will plan your childs treatment. A pediatric Hematologist/Oncologist is also a pediatrician and may take on some of the responsibilities of the family pediatrician during chemotherapy and radiation treatments. 10 11. What is Cancer? Cancer is cells that are growing out of control. These cells are not normal healthy cells. Cancer cells can also spread to other parts of the body. This is called metastasis. 11 12. There are three types of cancers in children: Leukemia is cancer of the blood Lymphomas are cancers that begin in lymph nodes Solid tumors are an abnormal mass of cancer cells 12 13. Causes of Childhood Cancer Doctors do not know the causes for most cancers. Most patients and families worry about the causes and often blame themselves for their childs cancer. Cancer is no ones fault. Please share your questions and feelings with your childs health care team. 13 14. How Childhood Cancer Differs from Adult Cancer Children tend to respond differently to treatment than adults. Breast, prostate, colon, skin and lung cancer are the most common cancer in adults. The most common types of cancer in children are leukemia, brain tumors, rhabdomyosarcoma, retinoblastoma, neuroblastoma, Wilms tumor, osteosarcoma, and lymphomas. 14 15. MOST COMMON TYPES OF CHILDHOOD CANCERS Leukemia Leukemia is a form of cancer of the blood in which the white blood cells are abnormal. It can occur at any age, but the most common ages are from 3 to 9. Boys have a slightly higher risk of developing leukemia than girls. Acute Lymphoblastic leukemia (ALL) is the most common form of childhood leukemia. The lymphocytes in the white blood cells do not mature and grow out of control in the bone marrow, spreading to the blood, liver, spleen, and sometimes the spinal fluid. Acute Myelogenous leukemia (AML) is also a type of leukemia where the multiplication of white cells is abnormal. In this type of leukemia, the myelocytes multiply too quickly and grow out of control. AML is rare in children. 15 16. Brain Tumors Brain tumors are tumors that grow in the brain. They are the most common type of solid tumor found i