Helpful Information for Families of Children with Cancer or Blood Related

Disorders

CONTRIBUTORS:

Current Edition (2006):

Charlotta Marshall, RN, MSNHematology/Oncology Family Handbook Project Leader

DMC-Children’s Hospital of Michigan

Ibrahim Ahmed, MDKanta Bhambhani, MD

Denise Cain-Jones, LMSWSandra Conoff, RN, CPNJan Cottrell, RN, MSNCathy Davey, RN, CPN

May Faraon, RPhBeverly Hindson, IHMVeronica Kaschalk, RN

Jennifer Lesnek, RNRhonda McDougall, RN, MSN, CPNP

Kathy Miller, RN, CPONKathy L. Moore, RN

Michelle Murray, RD, CSPKarel O’Brien, LMSWBethany Russell, CLS

Michelle Aquino-Sepanak, RN, CPNIndira Warrier, MD

Elena Zachary, RN, CPN, CPON

Building Blocks and Siblings of Hospitalized ChildrenCreated and Written by: Amanda Hays, CCLS

Illustrations by: Microsoft Clip Art 2003

Previous Editions (1996, 1998, 2001, 2004):

Mindi Botterill, RN, BSNKaren Couser, ACSW

Debbie DeCamillo, RN, BSNMaribeth Guys, RN, MSN

Janet Kaplan-Swimmer, RN, BSNMadelyn Torakis, RN, MSN

Debbie Roarty, RN, BSNCarolyn Scheer, RN, BSN

Stephanie Tatum, RN, BSN

1996 (Revised: 1998, 2001, 2004)

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©2007 Children’s Hospital of Michigan

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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

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TREATMENT Protocols 41 Informed Consent 41 Roadmaps 42

BONE MARROW TRANSPLANT (BMT) / STEM CELL TRANSPLANT (SCT)

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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

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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

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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

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GLOSSARY 140-147

“Life is About Living” 148

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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.

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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.

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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.

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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.

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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

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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.

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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.

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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.

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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.

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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).

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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.

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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

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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HEMATOLOGY/ONCOLOGY STAFF

Pediatric Hematology/Oncology Attending PhysicianYour 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 PractitionerA 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 SpecialistClinical 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.

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Nurse ClinicianNurse 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.

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Hematology/Oncology PharmacistA 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 TeamAn IV team consists of a group of nurses who are skilled in the areas of IV starts, phlebotomy, and venous catheter care.

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Social WorkerSocial 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.

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Child Life SpecialistChild 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.

PhlebotomistThe 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 AideUnder 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.

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Pastoral CarePastoral 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.

PsychologistA 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.

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DieticianDietitians 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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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STEM CELL DONOR TYPE OF TRANSPLANT

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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

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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.

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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: 5,000-10,000White 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:CBCTotal white blood count= 1OOODifferential: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+Bands15%+5%=20%

STEP TWO 1000X20%

STEP THREE 1000X 0.20=200

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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

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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.

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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.

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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.

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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.

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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

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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.

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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.

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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.

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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.

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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.

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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.

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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 1010F (38.50C), 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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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!

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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.

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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.

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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.

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Cancer Myths

Make sure your child understands that:

Cancer is no one’s faultWe 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 contagiousYou cannot get cancer from anyone and you cannot give cancer to anyone.

Cancer in children is not the same as cancer in adultsChildren with cancer respond better to treatment than adults with cancer

Cancer does not make your hair fall outYour 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. 

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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

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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

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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?

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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…?

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HELPFUL HINTS

Keep accurate records of name, address, phone numbers and names of representatives at your insurance company

Bring insurance cards with you to each clinic visit, including referral forms if you have an HMO

Inform hospital staff of any changes in your coverage ASAP as well as any changes in your address, phone, etc.

When you receive a bill for services that should have been covered by insurance, contact the billing source right away. Make sure they have the right insurance information

Discuss any ongoing billing or financial concerns with your social worker

Your child may qualify for additional coverage under CSHCS (CHILDREN’S SPECIAL HEALTH CARE SERVICES).

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SCHOOL

School is a very normal and important part of a child’s life. School not only educates a child but also provides him/her with a social outlet, friendships, and peer relationships.

When a child is not able to attend school because of illness and treatment, many issues can arise which need attention. The following section will address common school concerns and offer practical information on how to deal with them.

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HOMEBOUND TEACHING

When your child has an extended absence from school, the State has set up guidelines so that his/her education is not interrupted. This services is called ‘Homebound – Hospitalized’ Teaching. Following is a list of guidelines that should be followed when home teaching is necessary:

Contact the office of your child’s school to request home teaching

The student must be out of school for a minimum of four to six weeks (this varies by district)

A physician must complete a letter stating the medical reason for the absence and the expected length of time out of school

Once the school receives the letter, the district has 15 school days in which to send a teacher

If you do not hear from anyone within two weeks, call the school or home teaching office

The home teacher will come to your home for a minimum of two hours per week

The hospital teacher can also provide help in setting up home teaching if you run into difficulties

Remember that homebound teaching is real school. Grades are given and the goal is to try to keep your child up with his/her classmates

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STAYING IN TOUCH WITH THE SCHOOL AND CLASSMATES

While children are receiving homebound teaching, they need to feel that they are still part of the class. The following are some suggestions that may help your child and his/her classmates accept his/her absence from school:

Send your child’s picture to his/her classroom. Send new pictures as your child’s looks change

Make a video of your child at home or in the hospital to show his/her classmates

Let the teacher know that your child would appreciate hearing from his/her classmates through cards and letters

Ask the teacher if the class could tape record a message or send a video of the class to your child

Allow your child to attend a special event at school if his/her blood counts are high enough

Help your child call a classmate on the telephone

Ask the teacher to keep a box on your child’s desk to collect daily handouts, which can be taken to your child by a classmate

Ask the teacher to send homework to your child, if not yet receiving homebound services

Ask the homebound teacher to talk with your child’s classroom teacher in order to plan assignments that will meet your child’s needs

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SCHOOL RE-ENTRY

For the school-age child, school attendance is an important part of life as well as a vital developmental and social activity. School is a major activity for children; therefore, continuing to attend school as much as possible gives children a sense of normalcy in their lives. It also prevents them from falling behind their peers in educational and social development. It is often difficult for parents to have their children return to school because of concerns over their medical needs, but it is important that children return in order to continue their normal “work”. You may want to talk with a social worker about how to make the transition back to school easier for everyone.

You may want to ask about:

Having the social worker contact your child’s teacher, counselor, or principal to inform him/her of the diagnosis, treatment and potential concerns, and answer any questions regarding your child’s medical condition and needs at school

Arranging for a school presentation with your child’s classmates to provide basic information about cancer, types of treatment and ways in which classmates can help make reentry easier for your child

Arranging for a meeting with school personnel to provide information and address any concerns that staff or parents may have

Obtaining excuse forms to document an absence for medical reasons

Obtaining letters to document restrictions which your child may have (i.e., physical education, recess) or to exempt the child from immunizations

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HELPING CHILDREN WITH HOMEWORK

Getting your child to do his/her homework may be difficult. Your child may not feel well or may be tired by the end of the day. Some of the following suggestions may make doing homework a little easier:

Talk to the teacher about modifying some of the assignments. If a child understands a math concept, there really is no need to do 50 practice problems when 20 would reinforce the concept just as well.

Set aside a quiet area of the house for working with no radio or television. If possible, have a table and chair set up where your child can work. Always work in that area.

Limits should be set on when to start homework. Allow the child to relax after school, but agree on a starting time. Having a large clock in the study area is helpful. Younger children need shorter work periods. Their attention begins to wander after about 30 minutes of steady work. They may need a series of short work periods with breaks in between.

Set a deadline for working on homework. For example, all homework must be completed by 8 p.m. If the homework is not completed, the books must be put away and the child should get ready for bed. The child will also have to accept limits on grades from teachers due to work that is incomplete.

Remind your child that you are just an advisor on homework problems. This means that you will explain and give hints but will not do the work.

Be PATIENT! If you find yourself getting irritated, take a break and return at a later time. If your child still is having difficulty with the assignment, write the teacher a note explaining the problem. The teacher may need to review the lesson with your child at school the next day.

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SPECIAL EDUCATION

At times during the course of treatment, your child may need extra support to attend school. This support can be provided by the Special Education Department in your school district. Special education can provide the following services:

Door-to-door transportation

Physical and occupational therapy at school

Nursing service at school

Special tutoring

Special classroom placement

To take advantage of these services, the student must go through the IEP (Individualized Educational Placement) process. Just as for homebound services, the doctor must recommend special education. This letter is sent to the Special Education Department where a team leader, or teacher consultant, is assigned to direct your child’s IEP. This consultant will be in touch with a parent to explain the IEP process. Parents are one of the most important members of the team. The school district has 30 school days in which to hold the IEP meeting, at which time the team will meet to decide the best support services for your child. A parent can agree or disagree with the team’s suggestions; therefore, it is very important for parents to take an active role in the IEP process. The district must provide a suitable classroom situation, which is as much a part of the regular classroom as possible. Often this will be a child’s regular room with support services.

Special education provides many categories, each with specific requirements. Not all children are alike, and not all children within special education need the same thing to have a successful learning experience. Most children from the clinic who need special education services get them from the Physically or Otherwise Health Impaired (POHI) Department.

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HELPING SIBLINGS IN SCHOOL

Well brothers and sisters often have feelings and fears about their sibling who has cancer and the changes that are created in their families. It is not unusual for well children to have trouble eating, sleeping, playing, and paying attention in school, or even getting along with other children. Sometimes well children may report that they have the same symptoms as the child with cancer. Teachers can be the first to notice these changes. Sometimes well children have to deal with the questions, rumors, and teasing of the ill child by classmates. This can be even more difficult if the sibling with cancer attends the same school.

HELPFUL HINTS:

Contact the teachers of your well children to let them know about the diagnosis of cancer early in

the treatment process.

Keep in touch with teachers periodically to update them on the progress of the child with cancer.

Talk to siblings often about their brother or sister’s treatment, and ask them what questions they may have.

Encourage well children to attend clinic visits when possible to become more familiar with and involved in the treatment process.

Talk with the hospital social worker if you feel intervention between the hospital and school would be helpful.

Encourage siblings to report any problems they may have with other classmates to their teacher.

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Building Blocks

Basic Development of Infants

The period of early infancy is an exciting time of rapid growth and dependency on primary caregivers. Infants rely on others to meet their needs for physical contact and comfort, food and sleep. It is essential for an infant’s development that they form a secure attachment with their primary caregivers. As their primary caregivers respond to their needs, they form attachments based on trust and security. Secure attachments are the building blocks of your infant’s development, as your baby feels secure to explore the environment and learns in doing so.

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Issues Hospitalized Infants Face

Hospitalization poses disruptions to your infant’s development, normal routines, environment and sensory experiences. Some stresses infants may experience are:

The loss of normal stimulation

Sensitivity to abnormal stimulation (bright lights, loud noises, multiple caregivers)

Restriction of motion

Pain

Disruptions to normal routines

Separation from parents, which presents challenges to establishing secure attachments

During hospitalization, infants may show difficulty in feeding or sleeping. They may cry more, be difficult to comfort and show less interest in the world around them. Older infants may also react to hospitalization by clinging more to parents or becoming quiet, especially when strangers are near. In most cases, this resolves within a few weeks after going home from the hospital.

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Helping Your Infant Cope with Hospitalization

Parents can help their infants cope with hospitalization by:

Offering familiar stimulation during awake times

Limiting abnormal stimulation as much as possible

Holding, soothing, and interacting with the baby as much as possible

Being present for painful procedures

Staying with the infant as much as possible during hospitalizations

Implementing home routines as much as possible

Encouraging other family members to visit

Balancing day and night lighting

Offering soft music or speaking in soft voices often

Providing familiar objects for comfort and normalization (blanket, toys, stuffed animals)

Observing and responding carefully to the infant’s cues and behaviors.

Knowing that your baby may need extra attention and support while in the hospital. This extra attention communicates love and support, and will not spoil him or cause bad habits to form

Taking care of yourself

Contacting your Child Life Specialist!

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Toddlers

(One-Three Years)

Basic Development of Toddlers

Children ages one to three years old are enthusiastic about exploring the world around them through their senses. Secure attachments based on trust enable the toddler to feel the freedom and security to explore and learn about the world. During this time, motor skills are developing at a rapid pace.

Toddlers are learning to be independent, and do some things for themselves. They develop an assertive will and learn to make choices. Toddlers are extremely egocentric, thinking that the world revolves around them, while having difficulty seeing things from another’s point of view.

Rituals are important sources of security and stability, and objects that are familiar may serve as sources of security. Toddlers are learning how to think magically, and make sense of things they cannot understand by using magical thinking, or make-believe.

Toddlers are aware of separation from parents and are unable to understand the logic behind why a parent may need to leave.

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Issues Facing Hospitalized Toddlers

Hospitalization can be extremely stressful to toddlers. Some of these stresses include:

Separation from parents and family

Separation from normal environment (home/day care)

Loss of control and independence

Restriction of movement

Fear of the unknown (darkness, unfamiliar noises, people, and medical equipment)

Fear of abandonment or loss of love

Fear that the hospitalization is a punishment

Difficulty understanding time (hospitalization seems permanent)

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Helping Your Toddler Cope with Hospitalization

There are many things you can do to help your child cope with being in the hospital:

Stay with your toddler during their hospitalization and assure him or her of your love

Incorporate home routines such as bed / nap time

Provide familiar objects (clothes from home, blanket, stuffed animals or other security objects)

Be involved as much as possible in care giving and decision making tasks (bathing, feeding etc.)

Provide your child with basic and brief details about sensory information when possible (“The room will be dark with one bright light.”)

Offer your child your support during a procedure (holding hands, looking at your child face to face, talking gently and assuredly to your child, etc.)

Assure the child that the reason for hospitalization is to get well, and it is not because the child did anything wrong

Bring activities from home that your child likes to do and is able to do (watching favorite movies, coloring, playing with favorite toys)

Contact your Child Life Specialist!

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Basic Development of Preschoolers

Preschool children are active, curious and increasingly verbal. As they begin to explore the world around them, they learn that they are separate from their parents. These children may experience separation anxiety when they are away from their parents. They have a limited concept of time and logic. These children are egocentric, and believe that things happen because of their own thoughts, wishes or behaviors. Three to five year olds also think magically, and their ability to distinguish fantasy from reality is limited.

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Issues Facing Hospitalized Preschool Age Children

They may think that hospitalization is a punishment for something they did wrong

They may see separation from parents as abandonment or a loss of love

They have difficulty understanding time, so temporary hospitalization may seem permanent

It is difficult for children under five to understand the logical reasons for hospitalization

They may experience loss of control and loss of newly acquired skills

They may experience fear of mutilation or harm of their body parts.

They may fear death, the “boogieman”, or scary make-believe characters

They may lose appropriate sensory stimulation

They may regress to previous stages of development (thumb sucking, feeding problems, temper tantrums and bed wetting)

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Helping Your Preschooler Cope with Hospitalization

There are many things you can do to help your child cope with being in the hospital:

Stay with your toddler during their hospitalization and assure him or her of your love

Incorporate home routines such as bed / nap time

Provide familiar objects (clothes from home, blanket, stuffed animals or other security objects)

Be involved as much as possible in care giving and decision making tasks (bathing, feeding etc.)

Provide your child with basic and brief details about sensory information when possible (“The room will be dark with one bright light.”)

Offer your child your support during a procedure (holding hands, looking at your child face to face, talking gently and assuredly to your child, etc.)

Assure the child that the reason for hospitalization is to get well, and it is not because the child did anything wrong

Bring activities from home that your child likes to do and is able to do (watching favorite movies, coloring, playing with favorite toys)

Be honest about what will hurt (Don’t say it won’t when it will)

Do not threaten your child or use bribes (“If you don’t take your medicine, you will get a shot!”)

Contact your Child Life Specialist!

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Basic Development and Issues of School-age Children

School age children are driven to create and master things themselves. Through their abilities to master their experiences, they develop positive self-esteem and confidence. They want to earn recognition for their accomplishments and to fit in with their peers. They begin to have the ability to reason and understand cause, effect, time, and comparisons of different things. The basic structure and functions of the body begin to make sense and they have many concerns that have to do with their physical bodies. Many school age children have fears associated with the loss of their body parts or body functions. Separation from parents is also a concern for school age children.

Issues Facing Hospitalized School Age Children

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Anxiety and misunderstanding about illness, medical treatments and environment Fear that their body will be harmed during procedures Fear that they will never get well Fear that they will get another child’s illness Feelings of helplessness or loss of control, respect and love Anger about medical procedures Refusal to cooperate Fear of anesthesia or “sleeping medicine” Modesty concerns Separation from parents, siblings and peers Disruptions of normal routines They may regress to previous stages of development (thumb sucking, feeding issues, temper

tantrums and bed wetting)

Helping Your School Age Child Cope with Hospitalization

There are many things you can do to help your child cope with being in the hospital: Stay with your child as much as possible and assure him or her of your love Encourage your child to verbalize his or her feelings Respect your child’s fears and correct his or her misconceptions in a gentle manner Protect your child’s need for privacy Offer your child explanations for why they are in the hospital, what treatments are taking place,

and the reasons for the treatments Always tell your child the truth (Don’t say something won’t hurt if it will) Use minimally threatening sensory language (Instead of using the word “shot”, say “medicine

through a tiny needle) Never use threats or bribes (“If you don’t take your medicine, the doctor will give you a shot”) Always praise your child for doing a good job; even if it was a seemingly small task Encourage and facilitate communication between your child and their peers and siblings during

their hospital stay Support your child during procedures with your presence, gentle voice and touch Bring familiar things from home (pillows, pajamas, stuffed animals, movies, games, etc.) Observe and respond to your child’s cues and behavior Contact your Child Life Specialist!

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Basic Development of Adolescents

During the teenage years, issues such as independence, body image, and identity are highly important. Adolescents like to have a sense of control, value privacy, and have a great need for socialization. Adolescents are undergoing rapid physical changes that often make them self-conscious and worried about appearance. Being accepted as a member of a peer group can be very important. Adolescents are capable of using abstract thinking and logic to understand illness and treatments, but they often think they are safe from illness and harm.

Issues Facing Adolescents in the Hospital Complying with rules and limits set by adults in the hospital Anger associated with the loss of control Fears of pain Reluctance to ask questions at the risk of sounding dumb or stupid in front of others Invasion of privacy Fears of changes in appearance or sexual identity Fears of being forgotten by friends Worries of falling behind in school or extracurricular activities

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How Parents Can HelpThere are many things you can do to help your adolescent cope with hospitalization:

Facilitate choices and control; include them in the plan of care Encourage peer interaction Respect autonomy and protect privacy (draw a curtain or close the blinds, and ask for same sex

nursing) Give honest explanations of illness and plan for treatment Offer your support during procedures Provide opportunities for your adolescent to discuss concerns with staff and peers Bring familiar objects from home (Normal day time clothes and pajamas; pillow and blanket

from home, favorite movies and books)

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Tips for Adolescents

Talk to friends and express your feelings. It is up to you how much to tell about your hospitalization.

You may want to journal, scrapbook, read or watch movies to pass the time.

Your hospital stay may be like a roller coaster ride and there will be good days and bad days. You may feel like your emotions are out of control, but it is normal to feel a variety of feelings (anger, sadness, feelings of accomplishment, happiness). It helps to express these feelings with a caregiver, nurse, doctor or Child Life Specialist.

Be a part of the team providing for your care. Get involved in the decision-making and discuss ideas and opinions with your doctors.

Asking questions and gathering information can help you learn what is going to happen to you while you are here. Here are some examples of questions you may have:

o What do I have?o How is it treated?o Will any of the treatments be painful?o What are the results of my tests?o When can I go home?

It is a good idea to write down your questions so you are prepared when your doctor comes to see you.

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Resources

There are many resources available to a parent with a child who has been diagnosed with a blood and cancer diagnoses. Your community and your hospital can tell you about these resources. Your health care team will work with you in identifying appropriate resources. Transportation, financial, and support groups are examples of resources that can be helpful to your child and family.

Internet Sites

Resources that you may find helpful are the cancer websites. The health care team cannot verify the accuracy of the information on the websites. Your child’s health care team can answer questions that you have regarding cancer information found on websites.

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Siblings of Hospitalized Children

Siblings of hospitalized children have a great need for information. Although you may want to protect your children by keeping information from them, what they imagine is happening may be far more frightening than the reality that is occurring. Some parents underestimate their child’s capacity to understand, and the sibling’s desire for explanatory information about the ill or injured child.

Preparing Siblings for the Hospital Visit:

Describe and allow children to see the medical equipment being used to care for the patient – how it looks, how it is helping the patient. The child will no longer have to rely on his or her imagination to make sense of things. A Child Life Specialist is helpful in preparing siblings for a healthcare experience.

Describe to the child how the patient may look different than usual – bruises, abrasions, stitches, tubes, tape, bandages, etc.

Encourage, but do not force, the child to talk to and touch the patient, even if the patient is unable to respond.

Allow the child to determine the length of the visit, as much as is medically possible. Some children just need to see what is happening to the patient, and others may want to spend more time in the hospital room.

Afterward, the child may want to go to the Playroom or outside to play. Children use play to help them cope with stressful situations.

Common Reactions of Siblings:

Guilt – Children may feel responsible for the hospitalization. They may think that something they have said or done has caused the illness or injury.

Fear – Children may worry that the same thing will happen to them. They may be afraid they will “catch” the illness from the patient.

Jealousy – Children may think it is not fair that the patient is getting so much attention, and wish to become sick themselves.

Anger – Children may be upset and resentful about the changes that the hospitalization has caused in their normal routine.

Neglect – Children may feel that their parents no longer love or care for them when more time is being spent with the patient.

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Helping Siblings Cope:

Try to keep them on a normal schedule. Give the sibling appropriate information about the patient and their health. Younger children will

need information repeated for understanding. Make a point to spend one on one time with them. Set up a time for them to call the parent/sibling at the hospital at least once a day. Encourage them to ask questions and express their feelings. Help them feel involved.

Ask them to draw pictures to decorate the patient’s room Ask them to write a letter to the patient Tape or video record a message, stories or songs from sibling to patient Give the sibling a picture of parents and patient to keep with them Hang a picture of the sibling in the patient’s room

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MEDICATIONS

Medications that are used in patients receiving chemotherapy and radiation therapy:

Acyclovir (Zovirax) is a medication that is used to treat certain types of viral infections.

Allopurinol is a medication that helps prevent uric acid levels from building up in the body. High uric acid levels can cause kidney damage. Antiemetics are a group of medications that help with nausea and vomiting. Granisetron (Kytril), ondansetron (Zofran), and promethazine (Phenergan) are examples of antiemetics.

Bactrim is a type of antibiotic that is given to chemotherapy patients to prevent pneumonia.

Chlorhexidine (Peridex) is an antibacterial oral rinse used to prevent oral infections and treat mouth sores.

Dapsone is an antibiotic used to prevent pneumonia for children who cannot have Bactrim. It is given by mouth.

Dexamethasone (Decadron) and/or prednisone are steroids that are used to manage side effects of chemotherapy. These medications are also used as a form of chemotherapy.

Docusate (Colace) is a type of stool softener. It helps prevent constipation in patients receiving chemotherapy.

Filgrastim (Neupogen)( G-CSF) is a subcutaneous injection that is given for 7-10 days after chemotherapy to speed up maturation of white cells called neutrophils.

Lorazepam (Ativan) is a medication that helps to calm the nerves during chemotherapy treatments or procedures, and may also be used to help treat nausea.

Magnesium is a trace element that is given to patients to treat low levels of magnesium. Certain types of chemotherapy can cause low levels of magnesium. Low magnesium can cause seizures and other medical conditions.

Megestrol (Megace) is a medication used to increase the appetite and to help in weight gain.

Miralax is a laxative used to help treat constipation.

Myles magic solution is a liquid medication that helps prevent and treat mouth sores. Do not eat or drink for at least 15 minutes after taking this medication. This solution is only available at the CHM Outpatient Pharmacy.

Neulasta is a single subcutaneous injection of long acting Neupogen used in teenagers and adults after chemotherapy to speed up maturation of white cells called neutrophils. It is only one injection and used in children greater than 40kg in weight.

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Pentamidine is an antibiotic used to prevent pneumonia for children who cannot have Bactrim. It is given through an IV.

Phosphate is a trace element that is given to patients to treat low levels of phosphorus. Certain types of chemotherapy agents can cause low levels of phosphorus. Low phosphorus levels can cause muscle weakness and other medical conditions.

Potassium is a trace element that is given to patients to treat low levels of potassium. Certain types of chemotherapy agents can cause low levels of potassium. Low potassium can cause palpitations, skeletal muscle weakness or cramping, constipation, nausea or vomiting, abdominal cramping and other medical conditions. Potassium can be given as an IV or taken by mouth.

Prednisolone Acetate (Pred-Forte) is an eye drop suspension used during high dose cytarabine chemotherapy to prevent inflammation of the eye (conjunctivitis). Shake the suspension well before use. Instill drops into each eye; avoid contact of container tip with skin or eye. Ranitidine (Zantac) is a medication used to reduce the acid produced by the stomach and/or prevent or treat ulcers. It is often taken by mouth during steroid therapy.

Rasburicase (Elitek) is an IV medication that is used to treat high levels of uric acid, which can be a side effect of some cancer treatments.

Voriconazole (VFEND) is an oral antifungal medication that is given to patients receiving chemotherapy to help prevent fungal infections.

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GLOSSARY

ABSOLUTE NEUTROPHIL COUNT (ANC): number of neutrophils and bands

ACUTE: sudden, quick

AFEBRILE: without fever

ALOPECIA: loss of hair

AMPUTATION: surgical removal of a body part

ANALGESIC: medication used to reduce pain.

ANAPHYLAXIS: an allergic response to a drug or other substance resulting in hives or a severe reaction of shock

ANEMIA: less than normal number of red blood cells

ANTIBIOTIC: medicine to treat infection caused by bacteria

ANTIBODY: a protein in the body and blood that allows protection when exposed to certain infections

ANTIGENS: substances made by the body when antibodies are formed

ANTIEMETIC: medicine to prevent or treat nausea and vomiting

APLASTIC ANEMIA: unexplained failure of bone marrow to produce white blood cells, red blood cells, and platelets

AXILLARY TEMPERATURE: temperature taken by putting the thermometer under the arm

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BACTERIA: organisms that grow in body tissue and cause infection

BENIGN: a growth or tumor that is not malignant (cancerous)

BILATERAL: referring to both sides of the body

BIOPSY: the removal of a small amount of body tissue, which is examined under a microscope to help make a diagnosis

BLAST: an immature white blood cell that is not common in blood; may indicate leukemia cells in the bone marrow

BLOOD: fluid that circulates throughout the body; it is composed of red blood cells, white blood cells, platelets, and plasma

BLOOD TRANSFUSION: an infusion of a blood product through a vein to replace blood loss or correct anemia

BONE MARROW: soft material that fills the hollow space in some bones

BONE MARROW ASPIRATE: removal of bone marrow through a needle to diagnose certain types of cancer

BONE MARROW SUPPRESSION: a state where normal bone marrow cells are not present or are very low in number due to disease or treatment effects

BONE MARROW TRANSPLANT: a procedure where bone marrow is infused into a patient thru a vein

BROVIAC CATHETER: see “Central Venous Catheter”

CARDIAC: pertaining to the heart

CENTRAL NERVOUS SYSTEM: referring to the brain and spinal cord

CENTRAL VENOUS CATHETER: A long, soft tube inserted into a large vein that leads into the heart. These catheters are also known as a Broviac, a Hickman, an infusaport and port-a-cath. They are used to draw blood, administer medications and blood products.

CHEMOTHERAPY: medicine used to treat a disease; the word often describes drugs used to treat cancer

CHRONIC: long term with slow progression

COMPATIBLE: well-matched, able to mix together

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COMPLETE BLOOD COUNT (CBC): a blood test to determine the total number of white blood cells, red blood cells and platelets

CONSTIPATION: inability to have a bowel movement or a small amount of very hard stool

CONTAGIOUS: spread easily from one person to another

CONVULSION: a seizure, which can be described as an uncontrollable, involuntary movement

CROSSMATCH: the process of matching a patient’s blood to donated blood

CULTURE: a laboratory technique used to identify bacterial, fungal or viral infections

DEHYDRATION: a condition resulting from excessive loss of body fluids usually through vomiting, diarrhea, or inadequate fluid intake

DIAGNOSIS: specify a disease or cause of illness after a workup is completed

DIARRHEA: many loose, watery bowel movements

DIFFERENTIAL: exact number/percent of white cells in a CBC

EMESIS: vomiting

ERYTHROCYTE: mature form of a red blood cell

EXCISION: removal of tissue

EXTRAVASATION: the unintended leakage of chemotherapeutic medicine outside a vein causing a chemical burn

FEBRILE: elevated temperature over 101.5 degrees F (or 38.5 degrees C)

FUNGUS: an organism other than bacteria that causes a serious infection

GAMMA GLOBULIN: see “IVIG”

G.I.: (gastrointestinal tract) Refers to the digestive system including the stomach and intestines

GRANULOCYTE: mature leukocytes (neutrophils, basophils and eosinophils)

G-CSF: a medication that speeds up the maturation of white blood called neutrophils

G.U.: (genitourinary tract) Refers to the genital-urine system and the sex organs outside the body

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HEMATOLOGY: the scientific study of blood and blood diseases

HEMATURIA: blood in the urine

HEMOGLOBIN: the oxygen carrying part of red blood cells made in the bone marrow

HEMORRHAGE: the loss of large amounts of blood

HEPARIN: a drug used to prevent blood from clotting.

HLA TYPING: a test used to determine compatibility in white blood cells

HYDRATION: a term used to describe the fluid status of the body

HYPERPIGMENTATION: the reversible changes (usually a darkening) that occurs to skin and nails from chemotherapy and/or radiation

IMMUNE SYSTEM: one of the body defenses against infection, foreign material, and cancer, includes white cells, spleen, lymph nodes, and thymus

IMMUNOSUPPRESSION: weakening of the immune system defenses as a result of treatment of disease, increasing the infection risk

INCUBATION PERIOD: the interval between exposure and the appearance of the first symptom

INDUCTION: first phase of cancer treatment

INFECTIOUS DISEASE: a disease caused by germs, which can be passed from one person to another.

INFLAMMATION: a tissue reaction to injury

INFORMED CONSENT: a signed statement indicating your knowledge and agreement with prescribed course of treatment

INFUSION: the introduction of a solution into a vein

INTRAMUSCULAR: the introduction of a needle into a muscle to administer a medication

INTRATHECAL: method of administering medication into the central nervous system through a needle inserted into the spinal canal

INTRAVENOUS: method of inserting a needle into the vein

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IRRADIATED: small amounts of radiant energy used to destroy microorganisms in blood products

IRRITATION: reaction that causes swelling, redness, or itching

ISOTOPE: a radioactive material that can find abnormal tissue in certain areas of the body with the use of x-ray imaging

IVIG (INTRA-VENOUS IMMUNE GLOBULIN): a drug used in some children who have immune deficiencies

JAUNDICE: yellow discoloration of skin and body fluids due to the accumulation of bilirubin

LATE EFFECTS: consequences resulting from physiological and psychological changes related to treatment, which can occur after completion of treatment

LETHARGIC: drowsy, tired, and weak

LEUKOPENIA: total number of leukocytes (white blood cells) is less than normal

LUMBAR PUNCTURE (LP, SPINAL TAP): inserting a needle into a space between lumbar spinal bones, which contain spinal fluid. A small amount of fluid is taken out and examined under the microscope to look for cancer cells or infection. Medicines may be given through the same needle for children with leukemia and other cancers.

LYMPHOCYTES: A type of white blood cell that fight infections

LYMPH NODES (LYMPH GLANDS): tissues producing lymphocytes that aid in fighting infections; they can become large due to infection or cancer

LYMPH: a colorless fluid that makes and stores infection-fighting cells

MALIGNANT: cancerous

METABOLIZE: to breakdown or change the form of a cell

METASTASES: cancer cells that spread to other parts of the body

MONOCYTES: white blood cells that show the bone marrow is starting to recover

MYELOSUPPRESSION: decrease in any or all of the blood cells because of treatment

MUCOSITIS: also called stomatitis or mouth sores. The mouth or lip lining is inflamed, red or has open ulcers, often a side effect of chemotherapy.

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MUCOUS MEMBRANES: a lining of the internal surface of the body that produces mucous

NADIR: days where blood count will be at their lowest after chemotherapy

NAUSEA: unpleasant feeling in the stomach that usually comes prior to vomiting

NEUTROPENIA: an abnormally small number of infection fighting cells (neutrophils) in the blood

NEUTROPHILS: (also called granulocytes, segs, or polys): a type of white blood cell (granulocyte) that fight bacterial infection

ONCOLOGY: the formal study and treatment of cancer

OPPORTUNISTIC INFECTION: bacteria or fungus that do not usually cause infection, except when cancer or cancer treatment changes the immune system

PANCYTOPENIA: see “Myelosuppression”

PATHOLOGY: study of the nature or cause of disease, which involves changes in structure and function

PETECHIAE: small, pinpoint size red dots on the body caused by small blood vessels bleeding under the skin usually due to a decrease in platelets

PERIPHERAL: near the surface, away from the center

PHLEBITIS: inflammation of a vein

PLASMA: the fluid part of the blood that carries the cells; It also contains chemical and clotting proteins.

PLATELETS: small, disk-shaped blood cells that help blood to clot

PNEUMONIA: inflammation of the lungs, which can be caused by bacteria, viruses, or chemical irritants

POLYS: see “Neutrophils”

PORT-A-CATH: see “Central Venous Catheter”

PROGNOSIS: the potential outcome of a disease

PROTOCOL: the plan of treatment detailing treatment, side effects, and tests required

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RADIATION THERAPY: treatment with radioactive sources of energy, usually by external exposure but can be through radioactive seeds that are surgically implanted inside the body

RANDOMIZATION: chance selection of a treatment arm of a clinical trial protocol, usually done by a computer

RE-INDUCTION: starting over with a new treatment after a relapse of disease

RELAPSE: reappearance of cancer following a period of remission

REMISSION: period of well being when there are no signs or symptoms of disease

RESISTANT: no longer responding to treatment

SEDATION: a medication given to induce drowsiness, relaxation, or sleep

SEGS: see “Neutrophils”

SEPSIS: a severe bacterial infection in the blood stream

SHINGLES: painful, itching, red, blistered patches on the lower back or abdomen, usually following the ribs, caused by the herpes zoster virus

SPINAL TAP: see “Lumbar Puncture”

STAGE: the site, amount, or spread of a disease; stages usually range from 1 to 4, with 4 indicating the most advanced disease; staging helps to determine the treatment plan

STEROIDS: Drugs given for the treatment of certain cancers and blood disorders

STOMATITIS: inflammation of the mucous membranes of the mouth and/or G.I. tract

SUBCUTANEOUS: an injection just below the skin into fatty tissue

SUSCEPTIBLE: having little resistance to a disease

SYMPTOM: a change or sign in the body indicating disease or infection

THERAPY: treatment to eliminate a certain condition or disease

THROMBOCYTOPENIA: smaller than normal number of platelets in the blood resulting in an increased chance of bleeding

TOTAL PARENTERAL NUTRITION (TPN): an intravenous fluid that delivers nutrients to the body so that individual caloric needs can be met

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TOXICITY: the extent or degree of undesired side effects from a treatment

TUMOR: a mass or growth, which can be either benign or malignant

TYMPANIC THERMOMETER: a thermometer, which is used in the ear to take a temperature

TYPE AND CROSSMATCH: the process of matching a patient’s blood to donated blood

ULCER: an open sore or lesion

UNILATERAL: referring to one side

UPPER RESPIRATORY INFECTION (URI): usually a cold involving runny or stuffy nose and cough; it can be accompanied by a sore throat, headache, fever, and fatigue

VARICELLA: the herpes zoster virus, which causes chicken pox

VEIN: a blood vessel that carries blood toward the heart

VESICANT: a drug that can cause a chemical burn to surrounding tissue if it escapes outside of a vein

VIRUS: small organisms that cause infection

VITAL SIGNS: your child’s temperature, pulse, respiration, blood pressure, height and weight

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Life is about Living

Opening doors as well as closing Doors

When roadblocks occur in life

we must learn

How

To

Find

New Pathways

Look at each situation as a way to Grow

Confront each Challenge

With

Strength and a Positive Outlook

Embrace Everything and Everyone

Make every Day

Special

A

Cancer Survivor

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