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Parent and Family Handbook


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Parent and Family Handbook

  1. 1. Helpful Information for Families of Children with Cancer or Blood Related Disorders
  2. 2. CONTRIBUTORS: Current Edition (2006): Charlotta Marshall, RN, MSN Hematology/Oncology Family Handbook Project Leader DMC-Children’s 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 O’Brien, 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 Children’s Hospital of Michigan 2
  3. 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 Children’s 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. 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. 5. CARE AT HOME Fatigue, Activity and Rest 83-84 Appetite 85 Fluids and Dehydration 86 Exposure to the Sun 87 Taking Your Child’s 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. 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 Children’s 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. 7. GLOSSARY 140-147 “Life is About Living” 148 7
  8. 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 child’s illness and treatment. Adjusting to your child’s 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 child’s 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 child’s illness, but rather a guide for answering some of the questions you may have. 8
  9. 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, Ewing’s 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, Hodgkin’s lymphoma, non-Hodgkin’s 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 1990’s will become long-term survivors. 9
  10. 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 child’s 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. 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. 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. 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 child’s cancer. Cancer is no one’s fault. Please share your questions and feelings with your child’s health care team. 13
  14. 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. 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. 16. Brain Tumors Brain tumors are tumors that grow in the brain. They are the most common type of solid tumor found in children. Some types of brain tumors destroy normal tissue and interfere with essential body functions such as breathing, circulation, body temperature, and movement. Some tumors affect the senses like sight, while others invade areas which control memory, thought, and speech. 16
  17. 17. Lymphoma Lymphomas affect the lymph nodes, but also may appear in bone marrow and other organs. Non-Hodgkin’s lymphoma is cancer of the lymph tissue and the third most common form of childhood cancer. It is a solid tumor, which grows very rapidly, often invading other parts of the body, especially the spinal fluid. Hodgkin’s lymphoma is a disease of the lymph system, most commonly found in the lower cervical lymph nodes or chest (mediastinum). 17
  18. 18. Neuroblastoma Neuroblastoma is the second most common solid tumor found in children. This tumor arises from developing tissue that forms the adrenal glands and the sympathetic nerves where adrenalin is made. The adrenal glands are located just above the kidneys. The sympathetic nervous tissue can be found in the head, along the spine, the neck, chest, abdomen, and pelvis. 18
  19. 19. Wilms’ Tumor Wilms’ tumor is a malignant tumor of the kidney occurring most often in infants and young children. The tumor can start anywhere in the kidney. In some rare cases, Wilms’ tumor can occur outside the kidney 19
  20. 20. Rhabdomyosarcoma Rhabdomyosarcoma is a tumor of soft tissue. It is a malignancy of striated muscle cells that can involve any muscle in the body but most often involves muscle around the eyes, in the head or neck, pelvis (including bladder), and arms and legs. Also included in this group of tumors are leiomyosarcomas which affect smooth muscles, fibrosarcomas which affect fibrous connective tissue found in skeletal muscles of arms, legs, head, neck, and pelvis, neurofibrosarcomas which affect the nerve sheath, and synovial sarcomas which affect the synovial joints. 20
  21. 21. Bone Tumors The majority of bone tumors occur in adolescents. Osteosarcoma, the most common bone tumor in children, is usually found in the ends of the long bones of the arms or legs, but can occur in any bone. Ewing’s sarcoma is a round cell tumor of the bone. It is the second most common bone tumor in children, usually affecting weight-bearing bones of the pelvis, leg and upper arm. 21
  22. 22. Retinoblastoma Retinoblastoma is a cancer of the eye. Retinoblastoma is a tumor that arises from the retina of one or both eyes. This type of cancer can be a genetic cancer. Your physician will explain this in more detail. 22
  23. 23. Hematology/Oncology Care The hematology/oncology health care team includes dedicated doctors, nurses, pharmacists, social workers, chaplains, and child life specialists who have the desire to work closely with hematology/ oncology pediatric patients and families. Volunteers are also part of the team and are available to cuddle, hold, and talk with children when parents are not available. We recognize the needs of not only the child, but the family as well. We are dedicated to providing the highest quality care to children and adolescents in a caring, efficient, and family-centered environment. It is not unusual for our patients and parents to get to know one another during hospital visits, and provide informal support to each other. If there are any questions or concerns regarding your child’s care, please do not hesitate to contact any health care team member. 23
  24. 24. Pediatric Hematology/Oncology and The Children’s Oncology Group (COG) Pediatric Hematology/Oncology treats all types of childhood cancers and blood disorders. Most Hematology/Oncology Children’s hospitals are members of the Children’s Oncology Group (COG) institution. COG is a clinical research group for children with cancer in the United States and worldwide. Children treated on a COG protocol receive the same therapy as children at other COG institutions. Children on COG protocols receive the most current and up-to-date treatment for childhood cancers. 24
  25. 25. Neuro-Oncology Clinic If your child is diagnosed with a brain tumor or spinal cord tumor your oncologist may consult the Neuro-Oncology Team. This Team will examine your child and evaluate his/her progress. Clinicians from several areas including oncology, neurosurgery, neurology, neuro-psychology, radiation oncology, neuro-radiology, social work, and oncology nursing comprise the Neuro-Oncology Team. Bone Marrow Transplant The Bone Marrow Transplant Team offers comprehensive care to patients undergoing a bone marrow transplant. Doctors and nurses on this hematology/oncology health care team have expertise in the clinical area of bone marrow transplant. 25
  26. 26. Hemophilia The Hemophilia Clinic offers diagnostic and treatment services to children with Hemophilia, von Willebrand Disease, and other bleeding or clotting disorders. The Hemophilia Health Care Team has a comprehensive clinic with services provided by a team of physicians, nurses, orthopedic surgeons, physical therapists, psychologists, social workers, dentists, nutritionists, pharmacists, and genetic counselors. Sickle Cell The Sickle Cell Center provides comprehensive medical services for children with sickle cell anemia from newborn to 18 years of age. A hematologist, pediatrician, nurse practitioners, social worker, and psychologist provide these services in order to address every aspect of the child and family’s care. 26
  27. 27. HEMATOLOGY/ONCOLOGY STAFF Pediatric Hematology/Oncology Attending Physician Your child’s primary physician has special training in pediatric cancer and blood disorders. The doctor will take care of your child’s medical needs in the hospital, clinic and at home. Nurse Practitioner A Nurse Practitioner is a Registered Nurse who has completed education at a Master level and has passed the certification examination in his or her desired specialty. A Practitioner works closely with the Attending Doctor to meet medical and nursing needs of your child Clinical Nurse Specialist Clinical nurse specialists (CNS) have special training in caring for children, which includes a master’s degree in nursing. They deal with health problems that occur during therapy and are qualified to do special procedures like bone marrow aspirations and spinal taps. They teach family members how to care for their child. They work closely with the attending physician to meet your child’s health care needs. 27
  28. 28. Nurse Clinician Nurse clinicians are registered nurses specially trained in pediatric hematology and oncology. They are responsible for administering chemotherapy, blood products, gamma globulin (IVIG), and other drugs, such as antibiotics. They are involved in teaching you about your child’s illness and treatment. The nurse clinician is knowledgeable about treatment protocols and will help you manage the total care of your child. Hospital Hematology/Oncology Staff Nurse A Hematology/Oncology patient will also have a special nurse while in the hospital. The nurse will have special training in Hematology/Oncology. The hospital nurse responsibilities include nursing care, chemotherapy and medication administration, patient and parent education as well as ongoing emotional family support. 28
  29. 29. Hematology/Oncology Pharmacist A Hematology/Oncology pharmacist is knowledgeable in chemotherapy and medications that are specific to hematology/oncology patients. The pharmacist can answer any questions you may have regarding your child’s medications. ANCILLARY STAFF IV Team An IV team consists of a group of nurses who are skilled in the areas of IV starts, phlebotomy, and venous catheter care. 29
  30. 30. Social Worker Social workers provide children and their families with help in adjusting to the child’s illness. In addition, they provide ongoing assistance with practical and emotional concerns resulting from your child’s diagnosis and treatment. They assist in locating available resources to help with insurance and financial concerns. They are a liaison between the school and the hospital. The social worker can arrange special programs with the school to assist in providing your child with continuing quality education. Social workers also organize special groups, programs and events for patients, family members, and the community. 30
  31. 31. Child Life Specialist Child Life Specialists talk to kids about diagnosis, why they are in the hospital and about tests or procedures that they will have. The Child life Specialist will also provide ways to help you and your child cope during scary, uncomfortable or painful procedures. The Child Life Specialist can be with your child during all tests and procedures to provide distraction and/or help them know what is going on. The Child Life Specialist will provide suggestions on how to help other children in the family that are having a hard time with their sibling/cousin/friend being here at the hospital. Phlebotomist The phlebotomist is a medical technologist who routinely draws blood from your child. The blood is sent to the hematology lab where tests are performed, and the results are reported to the doctor and nurse. PCA/Medical Assistant/Nurse Aide Under the supervision of a registered nurse, the PCA/Medical Assistant/Nurse Aide delivers basic nursing care to patients. They obtain vital signs, record patient information, perform phlebotomy, collect specimens, change dressings, and report information pertinent to patient condition and treatments to the professional staff. 31
  32. 32. Pastoral Care Pastoral care is available in-house on a 24-hour basis. A chaplain is assigned to both the outpatient clinic and the inpatient units. Chaplains are available to help support and sustain patients and families within the context of the family’s belief system. Psychologist A psychologist is available to our families and patients. The psychology staff evaluates the effects of cancer treatment on children’s behavior and adjustment, and initiates interventions to help children and families cope with medical treatments, such as painful procedures. They also perform special testing to assess development, learning ability and psychosocial adjustment. They provide valuable information to other staff members for total patient care. 32
  33. 33. Dietician Dietitians are responsible for evaluating the nutritional status of patients. They can identify dietary problems and are helpful in advising how to prepare foods; for example, a low sodium diet for patients on steroids, a high calorie diet for patients having difficulty eating as a result of treatment, or a low bacteria diet for patients who are immunosuppressed. 33
  34. 34. How is Cancer Diagnosed? Cancer is diagnosed by performing specific clinical procedures and tests. The type of tests ordered by the doctor will depend on the type of suspected cancer. The health care team will explain how the test is done, the reason for each test and how it will help with diagnosing the type of cancer. The hematology/ oncology health care team can help your child prepare for these procedures and tests. 34
  35. 35. Cancer Staging for Solid Tumors Tumors are staged based on their location and type of cancer. The starting point of the tumor is called the primary site. Metastasis is the word used to describe when the tumor or tissue has spread to other areas in the body. A tumor is usually staged from I to IV. Stage I is classified as being localized to a specific area and Stage IV means the tumor has spread to distal areas in the body. 35
  36. 36. Surgery Surgery is used in diagnosing and treating cancer. The first goal of surgery is to remove all or the majority of the cancer. Chemotherapy and radiation are sometimes used to shrink the cancer before surgery. A biopsy is a surgery that is done most often under general anesthesia. In a biopsy, a small piece of tissue is taken out of the body and tested for cancer cells. Sometimes surgery is performed a second time after chemotherapy and radiation treatments. The purpose of this second surgery is to remove the remaining cancer cells and evaluate the response to treatment. 36
  37. 37. Radiation Therapy Treatment may also include radiation. The Hematology/Oncology doctor will work closely with the Radiation Oncologist doctor to coordinate treatment care plans for children with a cancer diagnosis. Radiation therapy aims a beam of energy to where the cancer is located to kill or stop the cancer cells from growing. Treatment is given with radioactive sources of energy, usually by external exposure but can be through radioactive seeds that are surgically implanted inside the body. 37
  38. 38. . Chemotherapy Chemotherapy is medication that can kill cancer cells or stop them from growing. Chemotherapy is given in several different ways: orally (by mouth), IV through a vein, and by injection with a shot, or into the spinal fluid. Most children receiving chemotherapy are placed on treatment plans. 38
  39. 39. Central Lines A central line is sometimes needed for a child receiving chemotherapy. The central line catheter is tunneled into a large vein leading into the heart. There are different types of central line catheters. A Broviac catheter is placed by surgery and is a central line catheter. A Broviac is an external catheter that needs to be flushed with heparin every day. Heparin is a type of solution that prevents blood from clotting. A nurse will teach parents how to care for the Broviac. Teaching will include flushing the catheter with heparin and dressing changes. 39
  40. 40. A port a cath is another type of central line. It is an internal catheter placed by surgery that is tunneled into a large vein leading into the heart. The nurse will use a special needle each time the port needs to be used. There will be a small round lump just under the skin where the port a cath is located. A special cream is sometimes used to numb the skin before the nurse places the special port needle in. 40
  41. 41. Protocol The Hematology/Oncology doctor may place a child on a treatment plan called a protocol or study. A protocol or study is a treatment plan the Hematology/Oncology doctors have found to be helpful in treating the type of hematology illness or cancer a child has. The doctor may also talk about investigational studies and clinical trials. Investigational studies are treatment plans that are still being evaluated. The doctor may decide that offering this type of treatment may be beneficial to your child. Informed Consent You will be given a form to read which describes the treatments in the study as well as the possible benefits and known side effects. Your physician will review this information with you. Once you fully understand this information, you will be asked to sign the informed consent. Signing the informed consent gives us permission to enroll your child in the study. If your child is old enough, he or she will also be asked to read and sign the consent form. 41
  42. 42. Roadmaps If your child is being treated according to a protocol, you will receive a schedule of the treatments and tests that will done. This schedule is called a roadmap. The roadmap is a step-by-step guide of your child’s treatment. It shows you what tests and treatments will be done and when. Most tests and treatments are done according to the roadmap, but minor changes may be made depending on certain circumstances. You will be notified if any changes occur. 42
  43. 43. BONE MARROW TRANSPLANT (BMT) / STEM CELL TRANSPLANT (SCT) Bone Marrow Transplant / Stem Cell Transplant may be necessary to treat high-risk cancers, or when cancer returns (reoccurs). Bone marrow/Stem cell transplant may also be used to treat other medical conditions. This medical procedure requires high doses of chemotherapy/radiation therapy to kill the cancer cells and it also destroys the bone marrow. It is then necessary to give bone marrow/stem cells to the patient to help their bone marrow recover. Stem cells can be removed or harvested from the bone marrow or blood. They are given to the patient like a blood transfusion or with a syringe. Stem cells are cells that migrate to the bone marrow space, and like seeds, begin to grow and reproduce. They can be obtained from the patient, sibling, parent, or an unrelated donor. When stem cells come from the patient, it is called an Autologous transplant. When the stem cells come from someone else other than the patient, it is called an Allogeneic transplant. 43
  45. 45. GETTING READY FOR TESTS AND PROCEDURES Tests and procedures are often difficult for children due to fear of the unknown as well as the pain that may be involved with some procedures. It is also very stressful for parents to watch their child go through tests, which may cause him/her distress. There are ways in which parents can help children through these tests and procedures. It is helpful for children to recognize the feelings they are having. Children need to know what their bodies do when they are feeling scared. Your child may have cold hands or feet. This is from the veins getting tight. He/she may feel dizzy or sick to his/her stomach. Let your child know these feelings are normal. Helping children get rid of the scary feelings allows them to relax. Your child may also get mad about having the test or treatment. This is normal. Tell your child it is okay to be mad. Help him/her find ways to “talk out” or “act out” the mad feelings. Children can squeeze a foam ball or punch a pillow, read or listen to a story about being mad, or draw a picture showing their feelings. All of these things help them let out the mad feelings in a good way. Be sure you tell your child that he/she has not done anything bad to cause him/her to have to get the test or treatment. Be sure your child knows you are not angry with him/her. It is also important to know when to tell your child about the test or treatment. Children do best when they know ahead of time and have time to prepare themselves for it. 45
  46. 46. AFTER THE TEST After the test is done, children may still need help with coping. Your child should be told the good things he/she did to get through the test. Sometimes it is helpful for children to talk out feelings about the test or treatment. This is very important if the test will be done again. Let your child tell you about any worries he/she has about the results. Do not tell your child everything will be OK. It is normal for your child to feel worried. Let your child draw pictures about what was done and how he/she felt. You might also give your child play medical toys and let him/her act out the test or treatment. It is normal for children to do this over and over. Reassure your child that he/she has not been bad and the test is not a punishment. 46
  47. 47. TYPES OF TEST X-RAYS (RADIOLOGY) WHAT IT IS: X-rays are pictures of the body used routinely for treatment follow-up as indicated by the protocol, or if your child is ill. They are painless and require your child to hold still for a short time while the picture is taken. GETTING READY: Your child may eat and drink before the test. Depending on what part of the body is being x-rayed, your child may need to wear a hospital gown and remove jewelry and/or hair accessories. WHAT TO EXPECT: Chest X-ray: Your child will have to stand in front of the x-ray machine or sit in a special chair. Your child will be asked to take a deep breath and “hold it”. The staff may let you stay with your child but you must wear a special apron. Skeletal Survey: Your child may be asked to lie on a table. Abdominal X-ray: Your child will lie, sit or stand for the pictures. Paranasal Sinus X-Ray: Your child will have to either stand or lie on the table, depending on the child’s age. The parent should expect to assist with this exam to help the technologist. 47
  48. 48. ULTRASOUND WHAT IT IS: Sound waves are bounced off tissue and organs and then changed electronically into images on a monitor. Since tumors generate different echoes or sounds than normal tissue, ultrasound is effective in diagnosis because it recognizes masses that are not cancer. These sound waves cannot be heard or felt. It does not use x-rays. GETTING READY: You will be told whether or not your child can eat or drink before the test. WHAT TO EXPECT: A special jelly is rubbed on the skin over the area to be examined. A hand-held object called a transducer will be placed on the jelly and the picture will appear on the screen. An ultrasound does not hurt. 48
  49. 49. COMPUTER ASSISTED TOMOGRAPHY (CT SCAN) WHAT IT IS: CT scans are special x-rays used for diagnosis and follow-up. It takes detailed cross section pictures of the body showing bones and tissue. Sometimes contrast (dye) is needed to improve the pictures. GETTING READY: If your child needs sedation (medication to make him/her drowsy), he/she cannot eat or drink before the CT scan. This prevents your child from vomiting and choking while sedated. You will be told the correct preparation for your child’s CT scan. WHAT TO EXPECT: Depending on the test, the contrast may be given by mouth or intravenously (IV). It is very important for your child to hold still during a CT scan. If your child is too young to hold still or is uncooperative, sedation may be used. 49
  50. 50. MAGNETIC RESONANCE IMAGING (MRI) WHAT IT IS: MRI uses a large magnet, radio waves, and a computer to look at the body in greater detail. Sometimes contrast (dye) is needed to improve the pictures. GETTING READY: If sedation is used, your child may not eat or drink before the MRI. You will be told the correct preparation for your child. WHAT TO EXPECT: Contrast may also be given through an IV to make the body organs show up better. There will be a clicking sound heard by your child when the MRI machine is on. Your child must hold very still for an MRI, so if he/she is very young or uncooperative, sedation may be given by an IV. 50
  51. 51. NUCLEAR MEDICINE WHAT IT IS: These tests use certain isotopes (harmless radioactive material) to make pictures of the body. GETTING READY: Children may eat or drink before the test unless they are very young or uncooperative. If they are, then sedation must be used, and they cannot eat or drink before the test. You will be told the correct preparation for your child. WHAT TO EXPECT: Bone Scan: An isotope is injected in the child’s vein to get pictures of the bone. After the injection, you must wait one to two hours depending on your child’s age, while the isotope collects in the bones. Scanning devices are then used to track the isotope. Your child must lie very still during this procedure. 51
  52. 52. NUCLEAR MEDICINE Gallium Scan: This test shows pictures of the body like the liver, spleen, bones or brain. The isotope is injected on one day, then two or three days later, the scan is done. Nuclear medicine staff will tell you what days you have to return to have the scan completed. Looking at how the radioactive material distributes itself tells the doctor if the body is working normally. MIBG Scan: This test uses special isotopes that are injected into the child to show an active tumor. After injection, the child is seen one, two and three days later for testing. Young children may require sedation. 52
  53. 53. POSITRON EMISSION TOMOGRAPHY (PET SCAN) WHAT IT IS: PET scans look at the body using a computer, scanner, and cyclotron. It uses a special isotope that lets the doctor see how cells in the body are using energy. It is used to measure the size of a tumor or the amount of tumor left after surgery and/or chemotherapy. GETTING READY: Your child may not eat or drink before the scan. You will be told the correct preparation for your child. WHAT TO EXPECT: While the isotope travels through the body, your child must remain quiet with no stimulation. Then he/she will lie on a table while scans are taken. The time varies with different parts of the body or organ being scanned. Sedation may be used if your child is unable to lie quietly for the duration of the test. 53
  54. 54. CARDIOLOGY WHAT IT IS: Tests that are performed to check the function of the Heart. GETTING READY: No special preparations WHAT TO EXPECT: Echocardiogram (ECHO): This is a test used to assess the function of the heart. A clear gel is placed on your child’s chest. A small instrument (transducer) is rubbed over the chest. Pictures of the heart appear on a monitor. This test is painless. Electrocardiogram (EKG): This is a test to determine the electrical activity of the heart. Small sticky patches, which are attached to wires, are placed on the chest, arms, and legs. These patches do not hurt. A machine records the activity with small wavy lines. Your child will be asked to lie very still. 54
  55. 55. AUDIOLOGY WHAT IT IS: These tests are done to evaluate hearing. GETTING READY: No special preparations WHAT TO EXPECT: Audiogram: Your child will wear a head set or ear phones and will be asked to raise his/her hand whenever he/she hears a sound. The right hand is raised when the sound is heard on the right side, and left hand is raised for sounds from the left earphone. Auditory Brainstem Response: This is done to further evaluate your child’s hearing, especially if he/she is too young to cooperate for an audiogram. Your child must lie quietly or be asleep. If needed, medication called Chloral Hydrate will be given to help a child go to sleep. If sedation is given, your child may not eat or drink before the exam. You will be told how to prepare your child for this study. 55
  56. 56. ELECTRONEURODIAGNOSTICS WHAT IT IS: These are studies and recordings of electrical activity in the brain and nervous system. GETTING READY: Hair must be clean and free of lotions or grease with no braids, beads or barrettes. WHAT TO EXPECT: Electroencephalogram (EEG): Brainwave activity is recorded by attaching cup electrodes to the scalp with sticky paste. It is not painful and requires the child to remain still, relaxed, and comfortable. The procedure takes approximately 90 minutes. Auditory Evoked Potential (AEP): The hearing nerve activity is recorded as it reaches the brain. This is done by placing small cup electrodes to the scalp. Sedation ma ybe required for this test. Your child may not eat or drink before this test if sedation is used. You will be told how to prepare your child for this test. Visual Evoked Potential: Visual nerve activity is recorded as nerve impulses reach the brain. . 56
  57. 57. PULMONARY WHAT IT IS: Pulmonary tests check breathing. GETTING READY: Your child may eat and drink before the test. He/she cannot be sedated from a previous exam. WHAT TO EXPECT: Pulmonary Function Test (PFT): This test determines how well your child breathes. Your child will blow into a mouthpiece that records the amount of air and how forcefully your child is able to blow out. This test takes 30-60 minutes. 57
  58. 58. LABORATORY WHAT IT IS: All tests involving body fluids will be done by the laboratory including blood, urine, spinal fluid and bone marrow. These are used in diagnosis and treatment. The results will be sent to your child’s doctor. The test will be explained before it is done. GETTING READY: If there is a special preparation for a test, you will be given instructions before the test is done. If your child needs sedation for a procedure, we ask you not to feed him/her until the test is done. If your child needs help coping with painful procedures, please let the doctor, nurse or health care team know. There are many reasons why children have difficulty with finger pokes, venipunctures, or other tests. We will help you and your child, but you must let us know your concerns. 58
  59. 59. LABORATORY WHAT TO EXPECT: Finger Poke: The end of a finger is poked to get a small amount of blood, which is collected in a small tube. Your child may sit in a chair or on your lap in the finger poke room. Your child’s finger will be washed to remove the bacteria on the skin. A lance will quickly poke the finger, gauze will wipe away the first drop and then more drops are collected in a small tube. The finger sometimes has to be squeezed to obtain the blood sample. Then the finger is cleaned off and a bandage is applied. Venipuncture: If a larger amount of blood needs to be tested, your child may get a venipuncture. A small tourniquet is placed around the arm or leg to locate a vein. The area is cleaned and dried. The vein is stuck with a needle called a butterfly. A butterfly needle is used in children to stabilize the needle while the blood is being drawn. The venipuncture will be over quickly and gauze is placed over the needle site. When the bleeding stops, a bandage is applied. Complete Blood Count (CBC), differential (diff), and platelet count: A complete blood count is done routinely when your child comes for a checkup and/or chemotherapy. This test measures the number of different kinds of blood cells in the blood Hemoglobin (Hgb): Hemoglobin is the most important part of the red cells because it carries oxygen to the tissues and organs. When children have low hemoglobin, they are anemic. Some children may need a red blood cell transfusion. White Blood Cell (WBC): White blood cells are the body’s defense against germs. There are different types of white blood cells, such as granulocytes, monocytes, and lymphocytes. A differential is done to count how many of each white cell there is. Each type has a special job to do. Neutrophils and bands fight bacterial infections. When these cells are low, your child is neutropenic. This places your child at a higher risk for infection. 59
  60. 60. LABORATORY Platelets: Platelets are needed to clot the blood. If your child has a low platelet count, a platelet transfusion may be given. There are special safety precautions for when your child has a low platelet count. Type and Crossmatch: When your child needs a transfusion, this test is done to match your child’s blood to the donor unit. Liver Functions: SGOT (AST) and SGPT (ALT) are two liver enzymes that are tested in the blood. Bilirubin is another blood test done frequently, which measures how the liver is working. Kidney Function: BUN, creatinine, and electrolytes measure how well the kidneys filter certain elements like blood salts. It also measures hydration status. Urinalysis: Tells how well the kidneys are working. Your child will be asked to urinate in a cup. A urine culture is done if there are signs of infection. 60
  61. 61. Bone Marrow Aspirate/Biopsy Bone Marrow Aspirate/Biopsy: Blood cells are made in the marrow of certain bones. The marrow is removed and the doctor examines the bone marrow cells under the microscope. To do this procedure, your child will have to lay on his/her stomach or side. The nurse or doctor will tell you everything as it is being done to your child. The usual area of a bone marrow aspirate is the back hipbone called the posterior iliac crest, however, in children less than one year, a bone in the lower leg is used. With the child lying on his/her stomach, the skin is washed with betadine soap, which kills germs on the skin. This may feel cold. Next, a small amount of numbing medicine is given in the skin. This usually stings for a minute until the skin feels numb. Then, a long hollow needle is pushed into the bone. Some pressure may be felt during this part. A small sample (about a teaspoon) of blood-like material is removed. Then the needle is taken out and the area cleaned. A small pressure dressing is placed over the site with a bandage to keep it clean. The bandage is left on for 24 hours to make sure a good scab is formed. Your child will be able to get up right after the procedure. Sometimes a bone marrow biopsy is done at the same time as an aspiration. A small piece of bone is removed from the hip and sent to a special laboratory. Your child’s hip may be sore for up to 24 hours after the procedure. Parents may stay and hold their child’s hands during a bone marrow aspirate/biopsy to make him/her less afraid. Complaints of pain and discomfort are treated with Tylenol. There is also a small risk of infection at the site of the test. Children may receive sedation for this test. 61
  62. 62. Lumbar Puncture Spinal Tap (Lumbar Puncture, or LP): This procedure is used to tell if there are cells in the spinal fluid that do not belong there. This special fluid surrounds the brain and extends down the back in the spinal column. An LP may be done for certain types of cancer like leukemia, lymphoma and brain tumors. A spinal tap can also detect white cells that indicate an infection. Sometimes an LP is done to insert chemotherapy into the spinal fluid to kill cancer cells that might find their way there. To do this test, your child will lie on his/her side and curl up into a ball by grabbing his/her knees and tucking the chin on the chest. First, the lower back below the waist is washed with betadine. Then, sterile paper towels are placed under the back and on top of the hip to cover the area. To lessen the pain, a small amount of numbing medicine is injected into the skin. Then a spinal needle is placed between the bones of the back. A small amount of fluid is collected. Chemotherapy is gently pushed back into the spinal fluid. Then the spinal needle is taken out. A small bandage is placed over the area and is left there for 24 hours. Your child must lie flat without lifting his/her head for a period of time after the LP. This helps him/her avoid getting a headache and distributes the chemotherapy evenly. Your nurse will tell you how long your child will have to lie flat. Children may receive sedation for this test. 62
  63. 63. PATIENT CARE Blood Counts and What They Mean Most types of chemotherapy and/or radiation therapy that your child will receive affect the bone marrow. The bone marrow is the spongy part of some bones where the blood cells are made. Chemotherapy works by killing blood cells and causes bone marrow suppression (a slow down in making blood cells). This is why your child will have his/her blood counts checked every week or more often if necessary. Most of the time your child’s blood counts will be at a normal level. It is very important to know the times that your child’s counts may be low. Most of the time, blood counts will be at their lowest from five to fourteen days after the chemotherapy is given. The lowest point a blood count will drop is called nadir. Unfortunately, low blood counts are the major cause of most treatment delays, therapy changes, and unscheduled admissions to the hospital. Blood contains many substances: red blood cells, white blood cells, platelets, plasma, and other nutrients. Blood has four major jobs: • Carry oxygen to the body’s cells • Distribute nutrients so the body can create energy • Defend the body against infection • Remove waste from the cells 63
  64. 64. It is very important to understand how the blood cells help the body work. White blood cells, red blood cells and platelets are important in helping the body function. White blood cells, red blood cells and platelets blood cells are affected by hematology/oncology medical treatment plans. It is important to have an understanding of how these three blood cells work to help the body function. 64
  65. 65. White Blood Cells White blood cells help fight infections. A low white blood cell count places patients at risk for infections. CBC: “CBC” stands for “Complete Blood Count”. A CBC lets the doctor know how many of each type of blood cell is present in your child’s blood. The differential part of the CBC tells the doctor what type of white blood cells are in the blood. There are different types of white blood cells. The normal range for a white blood cell count is: 5,000-10,000 White blood cells that fight bacteria are called neutrophils and bands. Your doctor and nurse may talk to you about your child’s absolute neutrophil count (ANC). Your doctor and nurse can calculate your child’s ANC by adding the number of neutrophils and bands. The ANC helps the doctor measure your child’s ability to fight bacterial infection. If the ANC is, below 500, that number is considered low and your child has a low number of white cells that fight bacteria. This is called Neutropenia. Hematology/Oncology patients are at a greater risk for bacterial infections especially when their white blood cells are low. Example of ANC: CBC Total white blood count= 1OOO Differential: Lymphocyte =800 OR 80% Neutrophil= 150 OR 15% Bands=50 OR 5% ANC= (Neutrophils) 150+ (Bands) 50= 200 Your doctor and nurses sometimes will calculate the ANC to obtain a more accurate value. Total white blood cell count X percentage of Neutrophils plus percentage of Bands=ANC. Example of ANC calculation: WBC=1000, Neutrophils=15% AND Bands=5% STEP ONE Neutrophils+Bands 15%+5%=20% STEP TWO 1000X20% STEP THREE 1000X 0.20=200 65
  66. 66. When the white blood count is low: • Avoid crowds and anyone who is sick • Report all illnesses to the Hematology/Oncology doctor • Place Hematology magnet with emergency numbers on refrigerator • Call the hematology/oncology emergency numbers immediately when the temperature is 101 or above, and if the temperature is 100 twice in a row. If you do not hear back from the doctor, bring your child to the nearest emergency room. This is a medical emergency. • A mask should be worn by your child while in public when white count is low. Good hand washing is very important at all times throughout your child’s treatment. 66
  67. 67. Red blood cells Red blood cells are important because they help transport oxygen and nutrients throughout your child’s body. Red blood cells contain hemoglobin. Hemoglobin is part of the red blood cell that is responsible for moving oxygen throughout your child’s body. Normal range of hemoglobin: 12-14 GM Your doctor is concerned when the hemoglobin drops to 8gm or less. When the hemoglobin reaches 8GM OR Less,, the heart and other parts of the body are receiving less oxygen. When your child’s hemoglobin is low, they may be tired, pale in color and might become short of breath with activity. Your doctor might decide that it is medically necessary for your child to receive a blood transfusion. The blood transfusion usually will help your child feel better. 67
  68. 68. Platelets Platelets are blood cells that help stop bleeding. When bleeding occurs, platelets rush to the place of injury and start the clotting process. A low platelet count places your child at a greater risk for bleeding. A normal platelet count is 150,000-150,000- 450,000450,000.. Your child’s doctor may decide to transfuse your child with platelets if the platelet count drops below 20,000, or your child shows signs of bleeding. To control bleeding during surgery or a spinal tap the doctor will order platelets if the platelet count is below 50,000. When the platelet count is low: • There will be increased bruising and petechiae ( red spots) • Report all episodes of bleeding and seek medical attention immediately • Avoid all activity that can potentially cause injury • Your child should not participate in contact sports or rough play such as football, soccer, skateboarding, or rollerblading • Use a soft-bristled toothbrush or toothette (a sponge toothbrush). Do not schedule dental procedures or teeth cleaning. • If your child needs injections, make sure pressure is applied to the area for at least five minutes after the injection. • Do not take rectal temperatures because the lining of the rectum could tear and cause bleeding. • If your child is constipated, a medication that is taken by mouth will be given to soften the stool. • Foods with sharp edges (chips, hard taco shells) should be avoided so that the mouth or gums will not be cut. • Avoid very hot (temperature) foods that could burn the mouth. 68
  69. 69. INFECTION Cancer, chemotherapy, surgery, and radiation reduce the ability of your child’s immune system to fight infections (immunosuppression). Helping your child adjust to changes while on treatment requires time and effort from the whole family. Our goal is to help your child have as normal a life as possible with brothers, sisters, parents, grandparents, and friends during and after treatment. 69
  70. 70. PREVENTING INFECTIONS Cancer treatment reduces the immune system’s ability to work, so your child will be at risk for infection during his/her treatment. It is impossible to protect your child from all infections because your family must go on living together. There are certain guidelines to follow that can help, especially during the times when your child is neutropenic (has a low white count). • Keep your child away from large crowds such as shopping malls, movie theaters, restaurants, church, school or day care. • Your child and family should follow good handwashing techniques; wash hands before meals, after going to the bathroom, after blowing the nose, and after playing with other children. All people who care for your child should wash their hands before examining or taking care of your child. • When your child is neutropenic, avoid people who have signs of an infection such as fever, cough, sneezes, sore throat, or a rash. People who must be around your child with these symptoms must use good handwashing techniques and wear a mask. • Your child should not be isolated from brothers and sisters. • Do not eat with the same fork, spoon, or knife or eat off each other’s plates of food. Do not drink from the same cup. • Wash your hands frequently. • If your child has a central venous line, always wash your hands before and after handling the catheter. • Ask the doctor, nurse, or dietitian for an immunosuppression diet. • When your child’s counts are low, arrangements can be made through your social worker for home schooling, or we can work with school staff to make school as safe as possible. • Do not take rectal temperatures or use rectal suppositories. Anything pushed into the rectum can cause the rectal lining to tear and let germs such as stool into the area. 70
  71. 71. GENERAL SIGNS OF INFECTION • Fever • Shaking or chills • Cough or sore throat • Rapid or difficult breathing • Diarrhea or vomiting • Headache or stiff neck • Blisters, rashes, or sores • Earache • Any severe pain, especially during urination or bowel movement • Severe stomach pain • Red or swollen areas Fever is one of the first signs of an infection, but it does not have to be present for your child to have an infection, especially if he/she is neutropenic. You must call the doctor or clinic if you suspect an infection or see any of the signs listed above. Do not give your child Tylenol until you have talked to the doctor or nurse. Never give aspirin or Motrin to your child. Your child’s doctor will instruct you on what to do for your child. If your child develops any sign of infection, call the doctor or clinic immediately. Your child can become ill very quickly if he/she gets an infection. 71
  72. 72. BACTERIAL INFECTION Bacteria that live on our skin, in our mouths, and in our bodies, can cause serious infections in children whose blood counts are low, especially in children who have an implanted venous line (Broviac or port- a-cath). If your child develops an infection, it may be necessary to admit him/her to the hospital and use IV antibiotics to treat the infection. Before antibiotics are started, blood cultures are taken from a vein, and implanted venous line if there is one, for blood cultures. The blood culture will be checked for up to five days for any growth. Sometimes it is hard to identify the source of infection in children who are neutropenic, so antibiotics are used to eliminate the most likely and most serious sources of infection. Your child’s blood system is not the only place an infection might occur. Other common areas may be the bladder, lungs, ears, throat, and rectal areas. The doctor may also want cultures or x-rays of these areas. 72
  73. 73. OPPORTUNISTIC INFECTION There are organisms that do not cause infections in healthy children but can cause serious infections in children whose immune systems are affected by cancer or its treatment. These infections are called opportunistic infections. They include fungal infections and pneumocystis pneumonia. It is difficult to prevent exposure to these organisms because they are all around us. Your child will be put on Bactrim to prevent pneumocystis pneumonia or receive Pentamidine breathing treatments if he/she cannot tolerate Bactrim. Children who have AML or have received a bone marrow transplant will also be given a medication called V-Fend (Voreconazole) to prevent a type of pneumonia. VIRAL INFECTION Viruses usually cause minor infections such as the common cold, but certain viruses can cause severe infections in children who are receiving cancer treatment. Viruses cannot be treated with antibiotics. However, with children who are neutropenic, and have signs of infection (such as fever), the source of infection can be difficult to find, so your child may be treated with antibiotics if a virus rather than bacteria is suspected. 73
  74. 74. CHICKEN POX Chicken pox is a common childhood infection caused by the varicella virus. It is usually mild, and serious complications are rare. However, in children who are being treated for cancer, being exposed to or getting chicken pox is an emergency. It can be serious because of their immunosuppression. Cancer treatment will be delayed if your child develops chicken pox. Signs of chicken pox can appear from 10-21 days after exposure. They consist of flu-like symptoms including fever, fatigue, irritability, and vomiting. The rash usually appears as small, red spots on the scalp, neck, or face spreading to the chest, back, arms and legs. The red spots turn into little blisters that become filled with fluid, break, dry up and form crusts. New spots continue to develop for three to five days, sometimes longer. The rash is often very itchy. A child is contagious two days prior to breaking out until the rash is dried and crusted. It is very important for your child’s school and the parents of his playmates to notify you immediately if your child has been exposed to someone with chicken pox or a suspicious rash. Notify your nurse or physician of any exposures immediately (even on the weekend). We may be able to give a medication called Varicella Zoster Immune Globulin to help prevent or reduce the severity of some cases of chicken pox. This needs to be given within 72 hours of the exposure to be effective. If your child gets chicken pox after receiving the injection, he/she will be admitted to the hospital for Acyclovir. If your child develops chicken pox, he/she will need to be admitted to the hospital for an IV medication called Acyclovir, which is very effective in reducing the risk of serious complications. Encouraging oral fluids, warm baths, Aveeno baths, Calamine or Caladryl lotion, and oral Benadryl (taken as directed by your physician) can help make your child more comfortable. 74
  75. 75. SHINGLES Shingles is another type of infection caused by the varicella virus. Shingles occur as patches of red, blistered, blotchy spots. They most often occur in a line on the back, chest, or under the arms, but they can occur on other parts of the body. It can be very painful because nerves are affected by the infection. There can also be fever, chills, itchiness, and flu-like symptoms as the rash develops. It is very important to contact the clinic if any rash develops. Being exposed to, or getting shingles is an emergency. The varicella virus remains in the body long after recovering from the infection. Shingles can occur in people who have already had the chicken pox. You cannot catch shingles from someone else; however, if you have not had the chicken pox and are exposed to someone with shingles, you can develop the chicken pox infection. 75
  76. 76. COMMON SIDE EFFECTS OF CHEMOTHERAPY Chemotherapy is the use of chemical agents to kill cancer cells. Once in the body, chemotherapy attacks cancer cells and normal cells, especially those cells that divide rapidly. The normal cells most affected by chemotherapy are those in the digestive system (mouth, stomach, bowel, rectum), hair (scalp and body hair), and bone marrow where blood cells are made. The effects on the normal cells are usually temporary. DIGESTIVE SYSTEM EFFECTS Mucositis and stomatitis (mouth sores): Some chemotherapy can cause sores in the mouth. The sores can be mild to severe, and can be painful. They can occur on the lips, gums, tongue, or on the top, bottom, or sides of the mouth. Chemotherapy also temporarily prevents the normal repair of the mouth lining which can be damaged by teeth, rough food and hot food or drinks. Good mouth care is important to prevent infection. Teeth should be brushed with a soft brush or toothette. Infant’s and toddler’s teeth can be cleaned with a soft washcloth. Rinsing the mouth with water or a nonalcoholic mouthwash before and after meals is helpful. Foods high in acid (tomatoes, orange juice), spicy, or hot foods should be avoided. Serve food at room temperature. Bland foods such as mashed potatoes, ice cream, jello, or scrambled eggs are easier to eat. A straw can be used to direct liquid away from mouth sores when drinking fluids. If your child is complaining of pain, the doctor may order a medication to help numb the mouth and prevent infection. It should be swished around the mouth 30 minutes before meals. If your child is unable to drink fluids, the doctor or nurse should be notified because he/she may become dehydrated. 76
  77. 77. NAUSEA AND VOMITING Nausea and vomiting does not occur with all chemotherapy drugs. However, if it does occur, it can range from mild to severe depending on the dose and the type of chemotherapy. Drugs can irritate the stomach or stimulate an area in the brain causing nausea or vomiting. This usually happens within a few hours of receiving chemotherapy, and may last from minutes to hours. Nausea and vomiting lasting more than 12 hours is an emergency and should be reported to the doctor or nurse immediately. There are medications that can be given to decrease or prevent nausea or vomiting, and we will work to find the best treatment for your child. 77
  78. 78. CONSTIPATION Certain chemotherapy drugs can cause constipation. Your child can become constipated from eating less fiber, exercising less and/or drinking less fluids. Ways to prevent constipation include increasing the fiber in your child’s diet with fresh fruits and vegetables, oatmeal, or whole grains, encouraging fluid intake – especially juices, or increasing the amount of physical activity within reason. If these changes do not help, the doctor can prescribe a medication (Colace) which helps soften the stool. If your child has not had a bowel movement in over three days, or is having stomach pains, call the doctor or clinic immediately. Suppositories and enemas are not to be given to children receiving chemotherapy unless directed by your physician. DIARRHEA Some chemotherapy drugs, as well as radiation therapy, can cause diarrhea. If this occurs, the doctor and nurse need to know the amount, color, consistency, and number of stools your child is having. If your child has eight stools in 24 hours, or appears to be dehydrated, it is an emergency, and you should call the clinic or doctor immediately. Some suggestions for decreasing the number of diarrhea stools are: • Eat small amounts of food frequently instead of three large meals • Eat a soft, bland diet like the BRAT diet (bananas, rice cereal, applesauce, and dry toast) • Avoid the following foods: spicy foods, high fat or fiber foods, milk and foods containing milk • Drink liquids such as Vernors, Kool-Aid, or popsicles that allow the stomach to rest and provide much needed fluids 78
  79. 79. HAIR LOSS (ALOPECIA) The most common side effect of radiation therapy and chemotherapy is hair loss. Such a change in physical appearance may be the most upsetting part of receiving cancer treatment for your child. Teenagers who look different from their friends will need support in dealing with their hair loss. Other children may not have a problem with it at all. Occasionally, parents are more concerned than their child. Children may wear hats, wigs, or bandanas. Each child will find whatever is most comfortable for him or her. Hair may fall out all at once or gradually, but most importantly, it will grow back. It may grow back lighter, darker, or curlier. One further caution, a bare head loses heat in the winter and gets sunburned in summer, so wear protection and sunscreen. 79
  80. 80. WEIGHT GAIN/LOSS Weight gain from certain medications such as the steroids Prednisone and Decadron causes increased appetite, fluid retention, and noticeable changes in the face and abdomen. The effect of the steroids will stop after medication is discontinued. Stretchable clothes (sweats) are more comfortable during weight changes. It is important to remember that children on steroids will have a noticeable increase in appetite that is very real to them. They will be hungry all the time and can eat large amounts frequently. To reduce weight gain from fluid retention, avoid salty foods (chips) and high sodium foods (lunchmeats, cheese, and soup). Low sodium diets are available from the dietitian to help you make the right choices for your child’s condition. Sometimes chemotherapy affects metabolism, and children may not feel hungry. They may lose weight even if they eat a well balanced diet. Your child’s weight and nutritional status will be checked frequently in the clinic, and nutritional support will be provided if necessary. These body image adjustments can be made easier with the aid of our social workers as well as interacting with the other children. 80
  81. 81. BONE MARROW EFFECTS Chemotherapy and radiation therapy can reduce your child’s blood counts. This is what the treatment is supposed to do. From five to fourteen days following treatment, the bone marrow will start to build itself up again. If the hemoglobin is low, your child may be pale, irritable or tired. A blood transfusion may be necessary to help until the bone marrow starts to improve itself. If the platelet count is low, there may be bruising or bleeding. Your child will have to be careful not to fall or hurt himself/herself because of the risk of bleeding. A platelet transfusion may also be needed. If the white blood cell count is low, your child is at risk for infections. Good handwashing helps kill germs. He/she may not be allowed around large groups of people, for example, school, malls, or church. All of the counts must reach a satisfactory level before the next course of chemotherapy can be given. 81
  82. 82. NUTRITION When your child is diagnosed with cancer, adequate nutrition is very important. Children who are well nourished are more able to resist infection and tolerate treatment. Since chemotherapy and radiation can cause both nausea and vomiting, your child may have changes with his/her eating habits. It is important for children to maintain their nutritional status, and the staff will work with families to find the best way to meet these requirements. The following situations may require special dietary considerations: • Some children taking steroids will need to restrict their sodium intake since this drug can cause a rise in blood pressure and fluid retention • When your child is neutropenic (white blood cells are low), he/she will need to follow a neutropenic diet since it is difficult to fight infections with a low white count • There may be times when your child needs supplements for extra calories to maintain his/her weight while on treatment. • Please check with your physician before starting any dietary, homeopathic or vitamin supplements. If you have any questions or concerns about your child’s diet, the clinic dietitian or nurse is available to help. 82
  83. 83. CARE AT HOME One of our primary goals in caring for your child is to encourage and assist in establishing as normal a routine as possible while on treatment. The following section contains information about common concerns and how to manage them at home. This is only a general guide and should not replace contact with your child’s physician or the clinic staff. Remember, it is important that you feel comfortable in caring for your child. Please refer to the medical emergency section if you have any questions, and do not hesitate to contact the clinic staff or physician if you require clarification or assistance about a problem your child is experiencing. Fatigue, Activity and Rest Many children will experience some degree of fatigue during cancer treatment. Parents often have difficulty determining how much activity and rest is best for their child. A number of things including side effects of chemotherapy and radiation, depression, and anemia can cause fatigue. Usually children may have less energy to do the things they normally participate in. Some things you should look for are: • Lack of energy • Increased sleeping • A feeling of sadness • Not wanting to participate in normal activities • Decreased attention to personal appearance 83
  84. 84. The following are some ideas for adequate rest and sleep: • Plan rest periods to conserve energy for things that mean the most to your child • Schedule small periods of activity throughout the day rather than all at one time • Encourage regular naps and a consistent bedtime routine to ensure adequate rest and sleep Remember that fatigue caused by treatment side effects is temporary and should improve as blood counts return to normal. Do not force your child to do more than he/she can manage or force him/her to rest. Most children will let you know when they need to take a break, especially if regular naps and bed times are maintained. Notify the clinic staff or physician if your child’s fatigue becomes increasingly worse or he/she experiences any shortness of breath. 84
  85. 85. Appetite Poor appetite is a common side effect of cancer therapy that most families must deal with at one time or another. It can be caused from difficult swallowing, nausea, vomiting, changed sense of taste or smell, feeling full, or pain. Poor appetite is most often a temporary problem, but it is very upsetting and frustrating for both child and family. These are some things you should look for: • Mouth sores • Difficulty swallowing • Weight loss • Lack of interest in food • Refusing favorite foods Some of the things you can do to help increase your child’s appetite include: • Encouraging small, frequent meals • Encouraging high calorie foods that are easy to eat, such as pudding, yogurt, ice cream, milkshakes • Encouraging high protein foods and supplements • Serving food cold or at room temperature to decrease its taste and smell • Presenting food attractively • Making eating fun • Encouraging eating with others • Encouraging drinking between meals and less with meals Do not force your child to eat or let appetite be the focus of the relationship between your child and family. 85
  86. 86. Fluids and Dehydration Fluid balance means there is enough fluid in the body to make everything function correctly. Swelling is from too much water in the body. Dehydration is from not enough fluid in the body. Dehydration in children is usually caused by nausea, vomiting, diarrhea, poor oral intake of fluids, mucositis, or fever. These are emergencies, and your child should be evaluated immediately. The following are signs of dehydration: • Dry mouth, thirst • Dizziness, weakness • Inability to swallow dry food • Difficulty talking • Dry skin or “tents” when pinched • Swollen, cracked, or dry tongue • Fever (101.50 F) • Weight loss • Little or no urine • Increased fatigue • Sunken eyeballs • No tears Contact your physician or the clinic if you suspect your child is dehydrated. 86
  87. 87. Exposure to the Sun Cancer treatment increases your child’s sensitivity to the sun and makes him/her more susceptible to its ultraviolet or burning rays. Severe burning or a sun rash may occur. During radiation therapy, the affected areas of skin become red, dry, and irritated. Sun exposure makes this reaction worse. Children should wear protective clothing and SPF30 sunscreen to provide maximum protection. Sunscreen should be reapplied frequently. Talk with your doctor and nurse about special precautions that are necessary to protect your child from the sun. 87
  88. 88. TAKING YOUR CHILD’S TEMPERATURE Fever is the most important sign of an infection and can be dangerous to a child receiving cancer treatment. Take your child’s temperature if you notice tiredness or listlessness, chills or shakes, or skin that is warm to the touch. All families with children being treated for cancer need an accurate thermometer in the home. Watch your child closely for any of the signs of infection. During chemotherapy, if your child’s blood counts are low or suspected to be low, a temperature of 100.50 -101.50 F or higher is an emergency. Contact your child’s doctor, nurse, or hospital immediately. Your child will need to be hospitalized for intravenous fluids and antibiotics. A child on cancer therapy should NEVER have his/her temperature taken rectally because of the risk of bleeding or infection. 88
  89. 89. MEDICATIONS Carefully read the pharmacy instructions on all of your child’s medication containers. If you have any questions, ask your child’s doctor or nurse. For small children unable to swallow pills or tablets, use liquid medicines or crush the pills and add them to food or juice. Do not try to hide a pill or add it to a large amount of food or juice because your child may not finish all of it. Frozen grape juice concentrate will help the bitter taste of many medicines. You may also use a small spoonful of applesauce, baby food, ice cream, yogurt or jelly. Do not hesitate to ask the hospital staff for assistance if you are experiencing difficulty with the oral medications your child is taking. If you child vomits within 30 minutes after taking a medicine, repeat the same dose of the medication. If your child vomits after 30 minutes, call the clinic or doctor to get instructions. Do not repeat a chemotherapy medicine without first contacting the doctor or nurse if you are not sure. 89
  90. 90. COMMON PROBLEMS A parent whose child has cancer may worry about common illnesses and symptoms such as colds, flu, fever, earaches, joint pain, diarrhea, vomiting, and rashes. These do not always signal a major problem, but your nurse or physician should be notified when your child experiences any of these problems. Common colds can sometimes be treated at home, but always call the clinic and let the nurses know which symptoms your child has. Do not give your child any over-the-counter medications without first checking with the doctor or nurse. It is also helpful for your child to get extra rest and drink plenty of liquids such as Vernors, 7-Up or water. Fever is a special concern for children who are being treated for cancer. Fever is an emergency, so notify the doctor or nurse immediately of any temperature above, or equal to 1010 F (38.50 C), especially when your child is neutropenic. A temperature of 100.50 is also considered an emergency if it persists for more than 1-2 hours. Your doctor or nurse will tell you what to do for a fever. Never give aspirin or aspirin-containing medications to a child. Earaches can occur with a cold or upper respiratory infection. Your child should be seen by a physician for an earache in case he/she needs to be treated with antibiotics. Other mild flu-like symptoms such as aches and pains should be reported to the doctor. Mild diarrhea can be helped by eating a light, bland diet. Spicy and acidic foods should be avoided. Frequent small meals are better tolerated than large, heavy meals. Your child’s physician should be notified if vomiting or diarrhea occurs. Continued loss of fluid through vomiting and/or diarrhea can lead to dehydration. Rashes can also be alarming to parents. If your child develops a rash of any kind, it is an emergency, so call your nurse or physician immediately. The rash may be caused by a potentially serious infections such as the chicken pox or measles. 90
  91. 91. SPECIAL CARE TRANSFUSIONS The bone marrow produces white blood cells, red blood cells, and platelets. Since cancer treatment may slow down a child’s ability to make blood cells, there may be times when blood products are necessary during treatments. This may include blood and/or platelet transfusions. Red Blood Cell Transfusions Red blood cell transfusions may be given when your child’s hemoglobin is less than 8.0 grams. This is called anemia. When the hemoglobin drops this low, you may see changes in your child. Your child may look pale and be very tired. The heart works harder to send oxygen to the rest of the body when there is anemia. This is why it is important to keep your child’s hemoglobin above 8.0 gram. Platelet Transfusions Platelet transfusions are given if your child’s platelet count is less than 10,000, or if he/she is actively bleeding. If the count is between 10,000-20,000, a decision will be made by your physician as to whether platelets are needed. If your child needs an LP, the physician may order a platelet transfusion if the count is less than 50,000. Low platelets can cause your child to bleed. The most frequent sites of bleeding are the nose, gums, or needle insertion sites. Your child may bruise easily and may have petechiae (small red pinpoint spots). If you see any of these signs, it is an emergency and you should contact the clinic or physician on call immediately or go to an emergency room. TRANSFUSION REACTIONS Allergic reactions may occur when a transfusion is given. The most common reactions are fever, chills, and hives. Most reactions are controlled with medications. If your child has a reaction to blood or platelets, proper pre-medication will be given before future transfusions. You will be given instructions on how to care for your child at home after a transfusion. 91
  92. 92. G-CSF (GRANULOCYTE COLONY STIMULATING FACTOR) * Not All Patients Will Require G-CSF * G-CSF is a medication used to stimulate the growth of specific white blood cells called neutrophils in the bone marrow. Neutrophils are part of the body’s normal defense against infection. Since chemotherapy may cause the white blood cell count to drop, the neutrophil count will also be decreased. When this count is low, the chance of getting an infection increases. G-CSF works to reduce the risk of infection following cycles of chemotherapy. There are certain precautions that can be taken to avoid infections. G-CSF will help speed the “recovery” of the neutrophils. It is given once or twice a day in the subcutaneous (fatty) tissue of the arm or leg. You will start giving the medication to your child at home after the nurse teaches the correct technique to you. Your doctor will decide when the G-CSF should be given, how much to give, and for how long. G-CSF is usually started 24 hours after chemotherapy is stopped and is given for seven to ten days, depending on the protocol. Your child’s blood counts will be checked twice a week while he/she is receiving G-CSF to make sure it is working. Since G-CSF increases the white blood cell count, it is not unusual for the WBC to be very high after receiving just a few doses. The purpose of G-CSF is to increase the neutrophil count. During the time it takes for G-CSF to work, there is a chance that your child may get an infection or have a fever and need to be admitted to the hospital. The G-CSF will be continued in the hospital until the white blood cell count is fully recovered. The neutrophils are not the only cells affected by chemotherapy, platelets are also affected. When the platelet count is low, there is an increased chance of bleeding and bruising, so it is very important that pressure be applied to the site of the shot after it is given. 92
  93. 93. G-CSF (GRANULOCYTE COLONY STIMULATING FACTOR) * Not All Patients Will Require G-CSF * Some children receiving G-CSF complain of bone pain, headache, backache, or aches in the arms and legs. Tylenol may be given for these symptoms. There is also the rare possibility of a rash, respiratory difficulty, wheezing, weakness, hypotension, dizziness, sweating or an increased heart rate. G-CSF must be stored in the refrigerator. It is important to store it in a clean area away from anything that may cause it to freeze. All supplies used with the giving of G-CSF must be kept in a clean area. If your child is a candidate to receive G-CSF, your physician will discuss the medication in more detail. Neulasta Neulasta is a single subcutaneous injection of long acting G-CSF used in teenagers and adults after chemotherapy to speed up maturation of white cells called neutrophils. Children receive only one injection following chemotherapy. Neulasta is only used in children greater than 40kg in weight. If your child is a candidate to receive Neulasta, your physician will discuss the medication in more detail. 93
  94. 94. IVIG (INTRAVENOUS IMMUNE GLOBULIN) Intravenous immune globulin, or IVIG, is a blood product used to treat patients who are immunodeficient (when the immune system is suppressed). Immunodeficiency can be secondary to bone marrow transplant, leukemia, and lymphomas. IVIG is given into a vein or central venous line (Broviac or port) over four to eight hours. The infusion is started slowly and gradually increased to a maximum rate. This is done because there are possible side effects from IVIG that include flushing, chills, headache, nausea and vomiting, hypotension, or an anaphylactic reaction (severe or life-threatening). If your child is to be started on IVIG, your physician will discuss side effects and possible risks with you. 94
  95. 95. PAIN Most children at some point experience cancer pain during the course of their therapy. It usually occurs as a direct effect of the disease, treatment, or treatment-related procedure. Examples of disease pain are bone pain, soft tissue pain, nerve pain, or compression of the spinal bones. Examples of treatment-related pain are mouth sores, phantom limb pain, nerve pain, or pain from radiation skin changes. Treatment-related procedures that can be painful are bone marrow aspiration or biopsy, spinal tap, or IV start. 95
  96. 96. Procedure-Related Pain Procedure pain relief must be individualized to each child depending on his/her age, developmental level, type of procedure, time it takes to do the procedure, the child’s anxiety beforehand, and past experience in dealing with pain. The goal is to provide enough medication and/or distraction for a short period of time for minimal discomfort and quick recovery. Psychological interventions prior to the procedure such as relaxation, imagery, and distraction are helpful to most children. The use of short-acting drugs such as Versed or Morphine to tolerate the pain is called “conscious sedation”. Preparation for procedures includes providing information about what will happen and what it may feel like. Discussion about pain will always include time for the child to ask questions. Parents will learn how to help their child since even young children can be very perceptive of their parents’ fears. A positive environment always produces the best behavior. After painful procedures, children are allowed to pick from a special toy cabinet with a variety of things to encourage cooperative behavior. Treatment-Related Pain Treatment-related pain is common in children undergoing treatment for cancer. The most frequent types of pain include: pain after surgery; mucositis (mouth sores) caused by chemotherapy, and/or radiation therapy to the mouth and neck; headaches following lumbar puncture procedure and chemotherapy; local skin reactions from radiation therapy; and certain chemotherapy medications can cause pain such as jaw pain, leg pain and abdominal pain. Depending on the type of pain, various treatments may be useful, and may be prescribed by your child’s physician. These may include: pain medication; IV fluids; mouthwashes; skin lotions. If symptoms are severe, your child will be admitted to the hospital. Other common side effects that may cause discomfort include: sleep disruption; nausea; vomiting; diarrhea; constipation; and infections such as neuritis or cellulitis. 96
  97. 97. DISEASE-RELATED PAIN Cancer-related pain is also common in children. Cancer can invade nerve endings or destroy bones, infiltrate into tissues and cause swelling, infection, or obstruction. The goals of cancer-related pain treatment are pain relief and pain management. Many medications can be used for pain management. Your child’s physician will prescribe the necessary medication that is best for your child. One or more medications may be necessary which can be given in many different ways. All of these drugs work effectively when given on an around-the- clock schedule rather than when the child complains of pain. Regular dosing results in the best pain relief, and often, less of the drug is required. You should never give your child any medication unless it has been approved by your child’s physician. It is not unusual for physicians to prescribe very strong medications for pain control. Some parents may be concerned that their child will become addicted to the pain medication. Addiction is very rare in children with severe, chronic pain. Your child’s physician will determine what changes in medication and/or amount of medication will be necessary. In addition to the use of medications, the following are also helpful in managing your child’s pain: relaxation techniques, massage, applying warm or cold compresses, deep breathing, and/or distraction techniques. 97
  98. 98. CONSCIOUS SEDATION Some of our oncology patients must have painful procedures such as bone marrow aspirations and lumbar punctures. The pain can be minimized by giving mediations before the procedure. These medications can help your child relax and decrease the pain. It is important to remember that these medications will not put your child totally to sleep or make the procedures pain-free. These medications can make him/her feel sleepy or groggy during the procedure. Patients have also described themselves as “feeling silly” or “lightheaded” with these medications. Keep in mind the effects are temporary and will go away in approximately 45 minutes when the medication wears off. While sedated, your child is closely monitored and will not be discharged home until he/she is awake and oriented. DEEP SEDATION Deep sedation or general anesthesia is the use of medicine, given into a vein or by a mask, to make your child go completely to sleep. Your child will not remember having the test. Specially trained doctors and nurses will watch your child closely during the test. Your child will not be able to eat solid foods or drink liquids for a few hours before the test. 98
  99. 99. IMMUNIZATIONS Children receiving chemotherapy should not receive any immunizations without consulting your child’s physician. Chemotherapy lowers the ability of the immune system to respond to immunizations. The following immunization guidelines should be followed. Consult your doctor or nurse if you have any questions. • Household contacts, including siblings, should receive all scheduled immunizations EXCEPT FOR varicella (chicken pox) and any inhaled influenza vaccine (such as FluMist).. • The OPV (oral poliovirus vaccine) should NOT be given. • Your physician or nurse will advise you about immunizations for your child when treatment is completed. 99
  100. 100. When curative treatment is no longer an option. Palliative care is medical care that focuses on meeting comfort needs only. The focus is placed on: • Pain Control • Emotional Care • Nutritional Needs • Family Support Hospice is a means of supporting the family medically and emotionally after all standard medical care is exhausted. The Hematology/Oncology team will contact and will work with Hospice Care to meet needs of both the child and family. 100
  101. 101. TREATMENT TOXICITIES AND LATE EFFECTS OF TREATMENT Problems associated with chemotherapy, radiation, and surgery have been identified in children who have completed treatment. As these children get older, it is important to evaluate them regularly for problems that may arise. The reasons some children may experience problems are not clearly understood. The following areas may be affected by treatment: Central Nervous System (CNS) The central nervous system (the brain and spinal cord) functions can be affected as a result of treatment for cancer. Some of the problems identified are learning disabilities, difficulties with memory and attention span, and problems with muscle coordination. Radiation therapy and intrathecal chemotherapy (agents given into the spinal fluid) have been linked to these problems. Your child will be assessed on a yearly basis, or more often if necessary, for an neurological changes. This may include a physical exam, psychological assessment, school evaluation, and CT or MRI scan. Endocrine The endocrine system involves the growth and sexual development of children. Radiation and chemotherapy can cause delayed growth, delayed puberty, infertility/sterility, and problems with hormones. Your child’s growth and sexual development will be assessed by physical exam, lab work, and menstrual history in females. 101
  102. 102. Cardiac The heart function can be affected by radiation therapy and chemotherapy. Your child may require echocardiograms during and after treatment to monitor heart function. These toxicities may include irregular heart beat, shortness of breath, swelling in the feet and/or hands, and fatigue. Respiratory Function The lungs can also be affected by chemotherapy or radiation. The toxicities include a decreased ability to exercise, difficulty breathing, and coughing. Pulmonary function tests and chest x-rays may be done to follow your child during and following treatment. Renal Function Chemotherapy, radiation, and surgery may affect renal function that includes the kidneys and bladder. Signs and symptoms of renal problems include increased blood pressure, swelling of the hands and/or feet, blood in the urine and increased urgency and frequency of urination. Lab work and urine samples will be checked during and after treatment. 102
  103. 103. Musculoskeletal The musculoskeletal system involves the bones and muscles. Chemotherapy, surgery and radiation therapy can cause changes in this system. These problems may include dental changes, delayed bone growth, osteoporosis, muscle weakness, and curvature of the spine. Your child will be followed routinely with physical assessments by his/her physician, monitoring of growth, x-rays, scoliosis screening, regular dental check-ups, and physical therapy, if appropriate. Auditory High-pitched hearing loss may develop after treatment. Your child may require a special hearing test called an audiogram that will be done both during and after treatment. If your child has a hearing loss, he/she will be fitted with hearing aids. Your child will also be followed by his/her physician with regular physical exams. Gastrointestinal Function The stomach, esophagus and liver may be affected by treatment. This may cause jaundice, abdominal pain, changes in bowel movements, and how food is digested. Blood tests will be done during check-ups to determine if more tests are needed. There have been some reports of secondary malignancies developing in children who have had cancer. 103
  104. 104. MEDICAL EMERGENCIES The following are emergencies: • Fever of 101 degrees or greater; shaking or chills • Bleeding that cannot be stopped • Any injury or accident, especially to the head • Exposure to chicken pox • Rash • Headache that will not go away • Persistent nausea or vomiting • Rapid breathing • Sudden change in behavior • Any severe pain especially during urination or bowel movement • Severe stomach pain • Red or swollen areas An emergency is anything that could cause your child to be in serious danger if not taken care of MEDICALLY AT ONCE! 104
  105. 105. POSITIVE COPING FAMILY CHANGES Having a child diagnosed with cancer can be a tremendous strain on the family. The impact of the illness can be felt in many areas of family life. Daily life will need to be re-adjusted to accommodate the demands of the illness and its treatment. Families must adjust to the initial shock of the diagnosis, hospitalizations and clinic visits, and the long-term tasks of ongoing treatment. At the same time, it is important for all family members to keep home, work, and school as normal as possible. DISCIPLINE All children, whether or not they have cancer or some other illness, need the security of discipline. The special circumstances that children with cancer face makes maintaining discipline difficult. Disciplining a child with cancer may prove to be very challenging because of his/her uncertain future. Here are some things to keep in mind: • Your child with cancer, as well as his/her siblings, needs consistency in how they are treated and disciplined • It is important to treat your child after diagnosis as similarly as possible to the time prior to the diagnosis • Maintaining discipline and setting limits will help your child feel some sense of security in his/her new routine • Children expect to be disciplined, and the lack of it suggests to them that something is wrong Spanking and other forms of physical punishment are not wise forms of discipline, particularly when your child’s blood counts may be low. This could lead to more serious medical problems. 105
  106. 106. LIMIT SETTING All children test their parents to see if they mean what they say. A sick child may do this even more because he/she needs to know that at least one thing in his/her life has remained the same. Your child may test you in many ways. These behaviors may be normal when a child feels unsure about what is happening to him/her. Some of these behaviors may include: • Fighting with a brother or sister • Not wanting to go to bed on time • Wanting to sleep in bed with a parent • Refusing to do what you ask Things to remember: • It is important to set limits and see that your child adheres to them • If the child feels that they are not expected to behave, then they may not behave • Limit setting is HARD, especially for parents who are worried about an ill child • Limit setting by parents CAN help children feel safe and less helpless BEHAVIOR PROBLEMS AND TEMPER TANTRUMS Temper tantrums can be a normal part of childhood development, especially in the 2 or 3 year old. Children who are scared or stressed may also express those emotions through temper tantrums. It is important to discuss these concerns with the medical staff to see if the behavior changes may be drug related. Some children continue to have behavior problems in spite of parent efforts to manage them. Since ongoing behavior problems can be stressful for both parent and child, a referral for counseling may be helpful. 106
  107. 107. EFFECTS OF A CANCER DIAGNOSIS ON DEVELOPMENT Children pass through various stages as they grow and develop. These stages include physical and emotional growth. Certain actions and ways of behaving are normal for children as they pass through these stages. For example, it is normal for a two year old to say “No” all the time. A cancer diagnosis can cause a child’s development to be affected. It is important for you to help and allow your child to go through these stages by being supportive, patient, and understanding. Caring for Your Child When talking to your child about cancer, explain to your child how the body works. Use the words “happy cells” and “sad cells”. Do not use the words bad and good because these words are associated with placing blame. A child may feel that they did something wrong. 107
  108. 108. Cancer Myths Make sure your child understands that: Cancer is no one’s fault We do not know why kids get cancer but we know what medicines can help fight the cancer. It is important to know that no one, not even you, did anything to get cancer. Cancer is NOT contagious You cannot get cancer from anyone and you cannot give cancer to anyone. Cancer in children is not the same as cancer in adults Children with cancer respond better to treatment than adults with cancer Cancer does not make your hair fall out Your child has to take medicines that are called chemotherapy that will make the hair fall out. When you are done taking chemotherapy, your hair will grow back. 108
  109. 109. HAIR LOSS Loss of hair from treatment is a big stress for most children, particularly teenagers. Hair loss is a common side effect of cancer treatment; however, not all chemotherapy causes hair loss. Radiation treatment may cause hair loss in the area being treated. The amount of hair lost and how and when it falls out will be different for each child depending on the type of treatment and drugs being used. Hair loss usually begins about two to four weeks after treatment has started. The following are suggestions that may help your child cope: Hair loss is an important issue with children, since it sets them apart from their peers. Therefore, it is important to talk with your child about the hair loss before it occurs and not let it be a surprise. • Continue to brush and wash the hair • Keep sunscreen or a hat on if your child is in the sun • Let your child choose if he/she wants to wear a wig and help him/her find fun hats, scarves or caps to wear • If your child wants a wig, snip a lock of hair and save it to match color. It is best to fit for the wig after all the hair is gone • It is important to let children decide what they want to do regarding the hair loss, because it allows them to play an active role in decisions and gives them some control over a frightening situation 109
  110. 110. MEDICAL INSURANCE COVERAGE Financial issues can create a great deal of stress in families when a child has cancer. There can be expenses that may not have been anticipated. These are sometimes a result of the type of insurance benefits your child has. When your child is first diagnosed, it will be helpful to obtain a good understanding of what your insurance does and does not cover. This can greatly reduce some of the unexpected financial stress. The following questions may be helpful to ask your health insurance representative about your child’s coverage: BASIC COVERAGE • What type of insurance plan do you have; e.g., is it an HMO (Health Maintenance Organization) • What inpatient services are covered; what are not • What outpatient services are covered; what are not • Do you need to get a referral from your primary physician to have your child seen by another doctor • Do you have DEDUCTIBLE and CO-PAY amounts you are required to pay, and what are they • What medical services will you be required to pay for, and what can you get reimbursed for through your insurance plan 110
  111. 111. LAB WORK AND TESTS Children with hematology and oncology illnesses frequently need lab work, transfusions, x-rays, CT scans, MRI scans, an EKG, Echocardiograms, etc. • Will your insurance cover the cost of lab work and tests? • Will you be required to pay for any portion of them? • Do you need to get a referral from your primary doctor? 111
  112. 112. Chemotherapy and Prescription Drugs • Will your insurance cover the administration of outpatient chemotherapy? • Do you have prescription coverage? • Do you have a co-pay on prescription drugs? • Does your insurance have a pharmacy that you must use to have prescriptions filled? • Will your insurance cover medical supplies such as Broviac supplies? Home Care Services/Equipment • Does your insurance plan include home nursing services? • Does your insurance require that you use its home nursing agency? • Does your insurance include coverage for durable medical equipment (DME) such as wheelchairs, hospital beds, etc…? 112