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The CNCF Handbook for Parents of Children with Neuroblastoma

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The CNCF Handbook for Parents of Children with Neuroblastoma The CNCF Handbook for Parents of Children with Neuroblastoma The CNCF Handbook for Parents of Children with Neuroblastoma Acknowledgements Disclaimer Navigating Neuroblastoma and This Handbook (Read This First!) i Chapter 1 Confronting the Diagnosis 101 What is NB: Description, Diagnosis, and Staging 1:010 102 What is NB: Tumor Pathology and Genetics 1:020 103 What is NB: Risk Assignment 1:030 104 Questions for Your Doctors 1:040 105 U.S. Neuroblastoma Specialists 1:050 106 What is a Clinical Trial? 1:060 107 The World of Hospitals 1:070 108 Patients' Rights & Responsibilities 109 Reaching Out and Accepting Help 1:090 Chapter 2 Understanding the Basics of Frontline Treatments 201 Overview of Low- and Intermediate-Risk Treatment 202 Overview of High-Risk Treatment 2:020 Chapter 3 Coping with Treatment: Side Effects, Comfort, and Safety 301 What is Palliative Care? 302 Getting Through Chemotherapy 3:020 303 Surviving Neutropenia 3:030 304 Special Issues with Stem Cell Transplant(s) 3:040 305 Surgery 306 Central Venous Lines: Broviacs, Hickmans, & Ports 307 Radiation: From Tattoos to Side Effects 308 Coping with ch14.18 Antibodies 309 Coping with 3F8 Antibodies 3:090 310 Coping with 8H9 Intrathecal Antibodies 3:100 311 Coping with Accutane 3:110 312 Coping with MIBG Treatment 3:120 313 Advocating for Your Child 3:130 314 Special Issues for Teenagers and Adults © 2008 Children’s Neuroblastoma Cancer Foundation www.nbhope.org revised 6/29/2009 Table of Contents Chapter 4 Getting Through Tests & Scans 400 Introduction to Getting through Tests and Scans 401 Blood Tests: CBC – Complete Blood Count 4:010 402 Blood Tests: Liver & Kidney Function, Electrolytes (Chemistries), Cultures, Drug Levels 403 Urine tests: HVA/VMA, other 404 Biopsies: bone marrow (cytogenetics) and other 405 Scans: MIBG, PET, MRI, CT, bone scan, ultrasound 406 Other Tests and Scans: Heart, Lung, Auditory, and more Chapter 5 Reaching Remission (No Evidence of Disease) 501 What Does No Evidence of Disease Really Mean? 502 Eradicating Minimal Residual Disease 503 Short-term Side Effects 504 Follow-up Scans and Other Tests 505 Re-vaccination 506 Getting Your Treatment Summary 507 Returning to School and Life Chapter 6 Living With Long-Term Survivorship Issues 601 Hearing Loss 6:010 602 Dental Care 603 Scoliosis 604 Neurocognitive Issues 605 Psychological Issues 606 Horner's Syndrome 607 Neuropathy 608 Joint and Bone Pain 609 Hair Loss 610 Growth 611 Heart Issues 612 Sexuality and Infertility 613 Secondary Cancers Chapter 7 Treating Refractory NB 701 Treating Refractory NB 7:010 Chapter 8 Dealing with Relapse 801 Dealing with Relapse 8:010 Chapter 9 Managing Emotions 901 One Family's Insights 9:010 902 Parents Coping with Relapse 9:020 903 Informed Consent 9:030 904 Grooming a Pill Popper 9:040 © 2008 Children’s Neuroblastoma Cancer Foundation www.nbhope.org Handbook for Parents of Children with Neuroblastoma Chapter 10 Keeping Records 1001 Why Keep Records? 10:010 1002 Diagnosis Information Chart 10:020 1003 Drug and Test Chart 10:030 1004 Monitoring Response to Treatment 10:040 1005 Daily Record Chart 10:050 1006 Treatment Summary 10:060 Chapter 11 Utilizing Complimentary & Alternative Medicine 1101 What is Complimentary, Alternative, and Integrative Medicine? 1102 Learning about CAM 1103 Precautions Chapter 12 Turning to End of Life Care 1201 Turning to End of Life Care 12:010 Chapter 13 Support Resources 1301 Directory of On-Line Resources 13:010 1303 Travel Guide: Houston 1304 Travel Guide: National Institutes of Health (Bethesda, Md.) 13:040 1305 Travel Guide: New York City/MSKCC 13:050 1306 Travel Guide: San Francisco/UCSF 1307 Travel Guide: Philadelphia/CHOP 13:070 1308 Travel Guide: Chicago/CMH 13:080 1309 Travel Guide: Los Angeles/CHLA 1310 Travel Guide: Boston/Children's and DFCI 1311 Travel Guide: Burlington, Vermont 13:110 1312 Travel Guide: Ann Arbor, Michigan 1313 Tips for Navigating the Insurance Maze 1314 Finding Other Families: Listservs and on-line communities 13:140 1315 Keeping Family and Friends Informed 13:150 1316 Reading List 13:160 Chapter 14 Neuroblastoma Terminology 1401 Common Abbreviations 14:010 1402 Glossary of Medical Terms 14:020 © 2008 Children’s Neuroblastoma Cancer Foundation www.nbhope.org Acknowledgements This handbook is an evolving work that we hope will be available to guide parents through their children’s treatment for neuroblastoma until the day a cure is found. It has been “in the making” for many months, from its genesis in discussions over a bottle of wine, through telephone conferences and countless emails, to this on-line (and printable) document, which will continue to grow. Along the way, numerous members of the NB community have contributed their ideas, time, and talents to this project. Indeed, too many people have contributed for us to list their names here. We hope all the NB parents who find this resource will share their insights into how to cope with the daily challenges of NB treatment. Thank you from CNCF to all of those who have helped so far and all who will help in the future. We are very grateful to have you on our team! Please contact [email protected] with any comments © 2008 Children’s Neuroblastoma Cancer Foundation www.nbhope.org revised 5/25/2009 Disclaimer The text, images, tools, and other material contained in this book or on this site, particularly any information relating to health care and medical conditions, are provided in a summary fashion for educational and informational purposes only. This book or site may be used to complement your relationship with a health care professional who is familiar with your individual medical needs, and should not be relied upon as a substitute for professional medical consultation, diagnosis, or treatment. Always seek the advice of a physician or other qualified healthcare provider for any questions you may have regarding a specific medical condition. This book or site should not be used to diagnose specific medical conditions, offer medical advice, or endorse products or services. Never disregard professional medical advice or delay seeking it because of something you've read in this book or on this website. Only a doctor can provide you with safe and effective treatment and advice. IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY, CALL YOUR DOCTOR OR 911 IMMEDIATELY. Always seek the advice of your doctor before taking any prescription or over-the-counter drugs. When using this website, information will be transmitted over a medium that may be beyond the control and jurisdiction of the Children's Neuroblastoma Cancer Foundation (herein after referred to as "CNCF"). Under no circumstances shall CNCF be liable for any direct, incidental, special, consequential, indirect, or punitive damages that result from the use of or the inability to use, the materials in this website or the materials in any website linked to CNCF's website. By using this website, you agree not to rely on any information contained herein and further agree that use of this site is at your own risk. This website may contain public forums such as discussion forums, message boards, chatrooms, chatgroups, comment areas, and surveys. CNCF does not and cannot review all communications and materials posted or uploaded to the site for accuracy. CNCF assumes no obligation to monitor material, correct material, respond to material, or answer questions posted in public forums. CNCF does not verify the qualifications or other claims of anyone posting information to the public forums. Any opinions, advice, statement, or other information expressed in these public forums are those of a third party or user and may not reflect those of the CNCF, its employees, agents, or service providers. This book or website should not be considered complete or exhaustive, nor does it cover all disorders or conditions or their treatment, nor all health-related issues. The information you access through this site may not have been reviewed for accuracy by medical experts and is provided "AS IS" and without warranty, express or implied. CNCF makes no warranty as to the reliability, accuracy, timeliness, usefulness, or completeness of any information accessed through this site. CNCF assumes no liability or responsibility for any errors or omission in the content of this site. To the fullest extent permissible pursuant to applicable law, CNCF disclaims all express or implied warranties related to this site, including but not limited to implied warranties for merchantability and fitness for a particular purpose. © 2008 Children’s Neuroblastoma Cancer Foundation www.nbhope.org revised 6/29/2009 Navigating Neuroblastoma and this Handbook (Read this First!) Dear Parents in the NB Family, This handbook has been prepared for you by parents of children who are or have been in treatment for neuroblastoma. We understand that there is no pain like hearing the word “cancer” used in connection with your child. Each of us has struggled to understand what it means to have our child diagnosed with a disease we had never heard of before, and to obtain the information we needed to manage our child’s treatment. Having been there, we want to offer you hope and tools to make this journey easier. Although at this time you may feel overwhelmed and even helpless, there are things you can do to help your child and your family weather this crisis. Parents almost always express a sense of empowerment when they learn as much as they can about neuroblastoma and its treatment. We have developed this parent handbook to share what we have learned through our experiences fighting neuroblastoma. We have worked together to pool our collective wisdom about things a parent or other primary caregiver needs to know, so you won’t have to spend hours running down resources.
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