Chapters [1] [2] [3] [4] [5] [6] [7] [8] [9] [10] [11] [12] [13] [14]
Download entire Handbook in single PDF file: NB Handbook 7-2008
CNCF Handbook for Parents of Children with Neuroblastoma
Disclaimer
Acknowledgments
Chapter 1 Confronting the Diagnosis
What is Neuroblastoma?
101 NB: Description, Diagnosis, and Staging
102 NB: Tumor Pathology and Genetics
103 NB: Risk Assignment
104 Questions for Your Doctors
105 U.S. Neuroblastoma Specialists
106 What is a Clinical Trial?
107 The World of Hospitals
108 Patients' Rights & Responsibilities
109 Reaching Out and Accepting Help
Chapter 2 Understanding the Basics of Frontline Treatments
201 Overview of Low- and Intermediate-Risk Treatment
202 Overview of High-Risk Treatment
Induction Phase
Chemotherapy
Stem Cell Harvest
Surgery
Consolidation Phase
Stem cell transplant
Radiation
Treating Minimal Residual Disease
Accutane
Antibodies
Chapter 3 Coping with Treatment: Side Effects, Comfort, and Safety
301 What is Palliative Care?
302 Getting Through Chemotherapy
303 Surviving Neutropenia
304 Special Issues with Stem Cell Transplant(s)
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
310 Coping with 8H9 Intrathecal Antibodies
311 Coping with Accutane
312 Coping with MIBG Treatment
313 Advocating for Your Child
314 Special Issues for Teenagers and Adults
Chapter 4 Getting Through Tests & Scans
Understanding the Purpose of the Test
401 Blood Tests:
CBC – Complete Blood Count
Liver & Kidney Function
Electrolytes (Chemistries)
Cultures, Drug Levels
403 Urine tests: HVA/VMA, other
404 Bone Marrow Biopsies/Aspirates
405 CT/CT-Assisted Biopsy
406 Bone Scan
407 MIBG I-123 and I-131
408 MRI
409 PET
410 Ultrasound
411 Cytogentics
412 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
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
Chapter 8 Dealing with Relapse
801 Dealing with Relapse
What are the Symptoms of Relapse?
Relapse Treatment Rationale
Investigating Available Protocols
Enrolling in Clinical Trials
Maximizing Your Treatment Options
Weighing Quality of Life Issues
Reaching Second Remission (NED again)
Chapter 9 Managing Emotions
901 One Family's Insights
902 Parents Coping with Relapse
903 Informed Consent
904 Grooming a Pill Popper
Chapter 10 Keeping Records
1001 Why Keep Records?
1002 Diagnosis Information Chart
1003 Drug and Test Chart
1004 Monitoring Response to Treatment
1005 Daily Record Chart
1006 Treatment Summary
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
How do I know when it is the time to stop treatment? To stop transfusions?
What do I consider in choosing whether to have my child on hospice at home or in the hospital?
What sort of care is available for my child on hospice? What do I need to know about hospice to get the best care?
How can I most effectively manage my child's pain?
How do I make the most of my child's time?
How do I talk to my child with neuroblastoma?
What do I tell the siblings of my NB child?
How to I get the support I need from family, friends & others?
What do I need to know about the dying process (since no one is telling me about this)?
What do I need to know about planning and making final arrangements?
How do I let go? What is my role in releasing my child to a journey I have not experienced?
What thoughts do you have about the time ahead without our children?
Chapter 13 Support Resources
1301 Directory of On-Line Resources
1302 Travel Guides to Selected Cities with Neuroblastoma Specialists
1303 Houston
1304 National Institutes of Health (Bethesda, Md.)
1305 New York City/MSK
1306 San Francisco/UCSF
1307 Philadelphia/CHOP
1308 Chicago/CMH
1309 Los Angeles/CHLA
1310 Boston/Children's and DFCI
1311 Burlington, Vermont
1312 Ann Arbor, Michigan
1313 Tips for Navigating the Insurance Maze
1314 Finding Other Families: Listservs and on-line communities
1315 Keeping Family and Friends Informed
1316 Reading List
Chapter 14 Neuroblastoma Terminology
1401 Common Abbreviations
1402 Glossary of Medical Terms
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