Cover image for Childhood cancer : a parent's guide to solid tumor cancers
Title:
Childhood cancer : a parent's guide to solid tumor cancers
Author:
Janes-Hodder, Honna, 1966-
Personal Author:
Edition:
Second edition.
Publication Information:
Sebastopol, CA : O'Reilly, 2002.
Physical Description:
xx, 537 pages : illustrations ; 24 cm.
Language:
English
Added Author:
ISBN:
9780596500146
Format :
Book

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Summary

Summary

This second edition of the most complete parent guide available, features detailed and precise medical information about solid tumor childhood cancers, including neuroblastoma, Wilms tumor, liver tumors, soft tissue sarcomas, and bone sarcomas. In addition, it offers day-to-day practical advice on how to cope with procedures, hospitalization, family and friends, school, social and financial issues, communication, feelings, and, if therapy is not successful, the difficult issues of death and bereavement.

Woven among the medical details and the practical advice are the voices of parents and children who have lived with cancer and its treatments. As many parents have already found, advice from "veteran" parents can be a lifeline. Obtaining a basic understanding of topics such as medical terminology, how drugs work, common side effects of chemotherapy, and how to work more effectively with medical personnel can only improve the quality of life for the whole family suffering along with their child. Having parents describe their own emotional ups and downs, how they coped, and how they molded their family life around hospitalizations can be a tremendous comfort. Just knowing that there are other kids on chemotherapy who refuse to eat anything but tacos or who have frequent rages can make one feel less alone.

Parents who read this book will encounter medical facts simply explained, advice to ease their daily lives, and tools to be strong advocates for their child. It also contains a personal treatment summary and long-term follow-up guide for your child to keep as a permanent record.


Author Notes

Authors Honna Janes-Hodder and Nancy Keene have both had a child with cancer; they are very active in supporting other parents and in advocating with pediatric cancer specialists. Parents who read this book will encounter medical facts that are simply explained, advice that can ease their daily lives, and tools to help them be strong advocates for their child.


Table of Contents

Forewordp. xi
Introductionp. xiii
1. Diagnosisp. 1
Signs and symptomsp. 1
Where should your child receive treatment?p. 2
Physical responsesp. 3
Emotional responsesp. 3
The immediate futurep. 10
2. Coping with Proceduresp. 12
Planning for proceduresp. 12
Pain managementp. 15
Proceduresp. 20
3. Family and Friendsp. 41
The extended familyp. 41
Grandparentsp. 43
Friendsp. 47
Restructuring family lifep. 58
4. Forming a Partnership with the Medical Teamp. 67
The hospitalp. 67
Finding an oncologistp. 69
Choosing a hospitalp. 70
Types of relationshipsp. 71
Communicationp. 73
Getting a second opinionp. 77
Conflict resolutionp. 78
Changing doctorsp. 80
5. Clinical Trialsp. 83
Enrollment in clinical trialsp. 83
Standard treatmentp. 84
Types of clinical trialsp. 84
Randomizationp. 85
Design of clinical trialsp. 86
Supervision of clinical trialsp. 87
Questions to ask about clinical trialsp. 87
Informed consentp. 88
Assentp. 90
The protocolp. 91
The entire trial documentp. 93
Saying no to a clinical trialp. 94
Removing a child from a clinical trialp. 94
Points to ponderp. 94
6. Venous Cathetersp. 96
External catheterp. 96
Subcutaneous portp. 102
Peripherally inserted central cathetersp. 106
Costp. 109
Choosing not to use a catheterp. 110
Making a decisionp. 110
Adhesivesp. 112
7. Hospitalizationp. 114
The roomp. 114
Foodp. 116
Parkingp. 117
The endless waitingp. 117
Befriending the staffp. 119
Being an advocate for your childp. 119
Playingp. 122
8. Neuroblastomap. 124
The sympathetic nervous systemp. 124
Who gets neuroblastoma?p. 125
Signs and symptomsp. 126
Diagnosisp. 127
Treatmentp. 130
9. Wilms Tumorp. 137
The kidneysp. 137
Who gets Wilms tumor?p. 138
Signs and symptomsp. 140
Diagnosisp. 141
Treatmentp. 143
Other types of childhood kidney cancersp. 147
10. Soft Tissue Sarcomasp. 150
Muscles and connective tissuesp. 150
Rhabdomyosarcomap. 151
Who gets rhabdomyosarcoma?p. 152
Rhabdomyosarcoma signs and symptomsp. 153
Diagnosis of rhabdomyosarcomap. 154
Treatment of rhabdomyosarcomap. 157
Other soft tissue sarcomasp. 160
Newest treatment optionsp. 163
11. Bone Sarcomasp. 164
The skeletal systemp. 164
Osteosarcomap. 165
Who gets osteosarcoma?p. 165
Osteosarcoma signs and symptomsp. 166
Diagnosis of osteosarcomap. 167
Treatment of osteosarcomap. 169
Ewing's sarcoma family of tumorsp. 174
Diagnosis of ESFTp. 176
Treatment of ESFTp. 177
12. Liver Cancersp. 182
The liverp. 182
Who gets liver cancer?p. 184
Signs and symptomsp. 185
Diagnosisp. 185
Stagingp. 186
Prognostic indicatorsp. 187
Treatmentp. 188
13. Retinoblastomap. 193
The eyep. 193
Who gets retinoblastoma?p. 194
Signs and symptomsp. 197
Diagnosis and stagingp. 198
Prognosisp. 199
Treatmentp. 200
14. Sources of Supportp. 206
Hospital social workersp. 206
Support groups for parentsp. 208
Support groups for children with cancerp. 210
Support groups for siblingsp. 211
Parent-to-parent programsp. 211
Hospital resource roomsp. 212
Clergy and religious communityp. 213
Individual and family counselingp. 214
Campsp. 220
15. Chemotherapyp. 223
How chemotherapy drugs workp. 223
How chemotherapy drugs are givenp. 224
Dosagesp. 225
Chemotherapy drugs and their possible side effectsp. 225
Colony-stimulating factorsp. 246
Antinausea drugs used during chemotherapyp. 247
Drugs used to relieve painp. 251
Adjunctive treatmentsp. 256
Alternative treatmentsp. 256
16. Common Side Effects of Chemotherapyp. 260
Hair lossp. 260
Nausea and vomitingp. 263
Low blood countsp. 265
Diarrheap. 272
Constipationp. 273
Fatigue and weaknessp. 275
Bed wettingp. 277
Dental problemsp. 278
Mouth and throat soresp. 279
Changes in taste and smellp. 280
Skin and nail problemsp. 281
Learning disabilitiesp. 282
Eating problemsp. 282
17. Radiation Therapyp. 283
Radiationp. 283
Children who need radiation therapyp. 284
Questions to ask about radiation therapyp. 284
Radiation therapy schedulesp. 285
Radiation therapy facilitiesp. 285
Radiation oncologistp. 285
Radiation therapistp. 286
Immobilization devicesp. 286
Sedationp. 288
Types of radiation treatmentsp. 289
Possible short-term side effectsp. 294
Possible long-term side effectsp. 295
18. Surgeryp. 297
Types of surgeryp. 297
Presurgical evaluationp. 300
Anesthesiap. 302
The surgeryp. 303
Dischargep. 304
19. Bone Marrow and Stem Cell Transplantationp. 306
Children who need transplantsp. 306
Types of transplantsp. 307
Choosing a transplant centerp. 311
Paying for the transplantp. 313
The transplantp. 315
Emotional responsesp. 316
Complicationsp. 317
Long-term side effectsp. 320
20. Record Keeping and Financesp. 324
Keeping medical recordsp. 324
Keeping financial recordsp. 328
Coping with insurancep. 333
Sources of financial assistancep. 336
21. Nutritionp. 341
Treatment side effects and eatingp. 341
A balanced dietp. 344
Vitamin supplementsp. 346
Making eating fun and nutritiousp. 346
What kids really eatp. 352
Parent advicep. 353
Commercial nutritional supplementsp. 354
Feeding by tube and IVp. 356
22. Schoolp. 359
Keeping the school informedp. 359
Keeping teacher and classmates involvedp. 360
Keeping up with schoolworkp. 361
Siblings need help, toop. 362
Returning to schoolp. 363
Avoiding communicable diseasesp. 367
Preschoolersp. 367
Identifying cognitive late effectsp. 369
Record keepingp. 379
On accepting disabilitiesp. 380
The terminally ill child and schoolp. 380
23. Siblingsp. 383
Telling the siblingp. 383
Emotional responses of the siblingsp. 384
Sibling experiencesp. 389
Helping siblings copep. 396
Positive outcomes for the siblingsp. 399
24. Feelings, Communication, and Behaviorp. 401
Feelingsp. 401
Communicationp. 403
Common behavioral changes of childrenp. 406
Common behavioral changes of parentsp. 411
Improving communication and disciplinep. 416
Checklist for parenting stressed childrenp. 420
25. End of Treatment and Beyondp. 422
Emotionsp. 422
Last day of treatmentp. 423
Catheter removalp. 423
Ceremoniesp. 425
What is normal?p. 427
Follow-up carep. 430
Survivorshipp. 431
Employmentp. 434
The militaryp. 436
Insurancep. 436
26. Relapsep. 439
Signs and symptomsp. 439
Emotional responsesp. 441
Deciding on a treatment planp. 442
27. Death and Bereavementp. 447
Transitioning from active treatmentp. 447
Supportive carep. 450
Dying in the hospitalp. 451
Dying at homep. 453
Siblingsp. 454
The funeralp. 454
The role of family and friendsp. 456
Sibling griefp. 462
Parental griefp. 463
Looking back after many yearsp. 467
Appendices
A. Photographs of Our Childrenp. 469
B. Blood Counts and What They Meanp. 476
C. Resource Organizationsp. 484
D. Books, Online Sites, and Videotapesp. 501
Indexp. 521