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Parent Handbook by Chapters

Acknowledgement
Disclaimer
Navigating Neuroblastoma and this Handbook (Read this First)
Table of Contents

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 Doctor 1:040

105 U.S. Neuroblastoma Specialists 1:050

106 What is a Clinical Trial 1:060

107 The World of Hospitals 1:070

109 Reaching Out and Accepting Help 1:090

Chapter 2: Understanding the Basics

202 Overview of High-Risk Treatment 2:020

203 ALK in Neuroblastoma 2:030

Chapter 3: Coping with Treatment: Side Effects, Comfort and Safety

302 Getting Through Chemotherapy 3:020

303 Surviving Neutropenia 3:030

304 Special Issues with Stem Cell Transplants 3:040

308  What to Expect with Dinutuximab  3:081

309 What to expect with Naxitamab 3:0901

310 Coping with 8H9 Intrathecal Antibodies 3:100

311 Coping with Accutane 3:111

312 Coping with MIBG Treatment 3:120

313 Advocating for Your Child 3:130

Chapter 4: Getting Through Tests & Scans

401 Blood Tests: CBC – Complete Blood Count 4:010

Chapter 6: Living With Long-Term Survivorship Issues

601 Hearing Loss 6:010

602 Mental Health and Well-Being Facing Neuroblastoma

Chapter 7: Treating Refractory NB

701 Treating Refractory NB 7:010

Chapter 8: Dealing with Relapse

801 Dealing with Relapse 8:010

802 T-Cell Therapy

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

Chapter 10: Keeping Records

1001 Why Keep Records? 10:010

1002 Diagnosis Information Chart 10:020

1003 Drugs and Tests Chart 10:030

1004 Monitoring Response to Treatment 10:040

1005 Daily Record Chart 10:050

1005.1 Simple Daily Record 10:051

1005.2 Excel Workbook 10:052

1006 Treatment Summary & Example 10:060

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

1304 Travel Guide: Bethesda, MD/NIH 13:040

1305 Travel Guide: New York City/MSKCC 13:050

1306 Travel Guide: UCSF/San Francisco 13:060

1307 Travel Guide: Philadelphia/CHOP 13:070

1308 Travel Guide: Chicago/CMH 13:080

1311 Travel Guide: Burlington, VT/UV 13:110

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

1402 Glossary of Medical Terms 14:020

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