Childhood cancer : a parent's guide to solid tumor cancers

TITLE_DISPLAY:

个人著者:

Janes-Hodder, Honna, 1966-

出版信息:

Sebastopol, Calif. : O'Reilly & Ass., 1999.

格式:

图书

系列:

Patient-centered guides

物理描述:

xvi, 521 p. ; 24 cm.

主题词汇:

Tumors in children -- Popular works.

Cancer in children -- Popular works.

附加著者:

Keene, Nancy.

ISBN:

9780596500146

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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.

Foreword	p. xi
Introduction	p. xiii
1. Diagnosis	p. 1
Signs and symptoms	p. 1
Where should your child receive treatment?	p. 2
Physical responses	p. 3
Emotional responses	p. 3
The immediate future	p. 10
2. Coping with Procedures	p. 12
Planning for procedures	p. 12
Pain management	p. 15
Procedures	p. 20
3. Family and Friends	p. 41
The extended family	p. 41
Grandparents	p. 43
Friends	p. 47
Restructuring family life	p. 58
4. Forming a Partnership with the Medical Team	p. 67
The hospital	p. 67
Finding an oncologist	p. 69
Choosing a hospital	p. 70
Types of relationships	p. 71
Communication	p. 73
Getting a second opinion	p. 77
Conflict resolution	p. 78
Changing doctors	p. 80
5. Clinical Trials	p. 83
Enrollment in clinical trials	p. 83
Standard treatment	p. 84
Types of clinical trials	p. 84
Randomization	p. 85
Design of clinical trials	p. 86
Supervision of clinical trials	p. 87
Questions to ask about clinical trials	p. 87
Informed consent	p. 88
Assent	p. 90
The protocol	p. 91
The entire trial document	p. 93
Saying no to a clinical trial	p. 94
Removing a child from a clinical trial	p. 94
Points to ponder	p. 94
6. Venous Catheters	p. 96
External catheter	p. 96
Subcutaneous port	p. 102
Peripherally inserted central catheters	p. 106
Cost	p. 109
Choosing not to use a catheter	p. 110
Making a decision	p. 110
Adhesives	p. 112
7. Hospitalization	p. 114
The room	p. 114
Food	p. 116
Parking	p. 117
The endless waiting	p. 117
Befriending the staff	p. 119
Being an advocate for your child	p. 119
Playing	p. 122
8. Neuroblastoma	p. 124
The sympathetic nervous system	p. 124
Who gets neuroblastoma?	p. 125
Signs and symptoms	p. 126
Diagnosis	p. 127
Treatment	p. 130
9. Wilms Tumor	p. 137
The kidneys	p. 137
Who gets Wilms tumor?	p. 138
Signs and symptoms	p. 140
Diagnosis	p. 141
Treatment	p. 143
Other types of childhood kidney cancers	p. 147
10. Soft Tissue Sarcomas	p. 150
Muscles and connective tissues	p. 150
Rhabdomyosarcoma	p. 151
Who gets rhabdomyosarcoma?	p. 152
Rhabdomyosarcoma signs and symptoms	p. 153
Diagnosis of rhabdomyosarcoma	p. 154
Treatment of rhabdomyosarcoma	p. 157
Other soft tissue sarcomas	p. 160
Newest treatment options	p. 163
11. Bone Sarcomas	p. 164
The skeletal system	p. 164
Osteosarcoma	p. 165
Who gets osteosarcoma?	p. 165
Osteosarcoma signs and symptoms	p. 166
Diagnosis of osteosarcoma	p. 167
Treatment of osteosarcoma	p. 169
Ewing's sarcoma family of tumors	p. 174
Diagnosis of ESFT	p. 176
Treatment of ESFT	p. 177
12. Liver Cancers	p. 182
The liver	p. 182
Who gets liver cancer?	p. 184
Signs and symptoms	p. 185
Diagnosis	p. 185
Staging	p. 186
Prognostic indicators	p. 187
Treatment	p. 188
13. Retinoblastoma	p. 193
The eye	p. 193
Who gets retinoblastoma?	p. 194
Signs and symptoms	p. 197
Diagnosis and staging	p. 198
Prognosis	p. 199
Treatment	p. 200
14. Sources of Support	p. 206
Hospital social workers	p. 206
Support groups for parents	p. 208
Support groups for children with cancer	p. 210
Support groups for siblings	p. 211
Parent-to-parent programs	p. 211
Hospital resource rooms	p. 212
Clergy and religious community	p. 213
Individual and family counseling	p. 214
Camps	p. 220
15. Chemotherapy	p. 223
How chemotherapy drugs work	p. 223
How chemotherapy drugs are given	p. 224
Dosages	p. 225
Chemotherapy drugs and their possible side effects	p. 225
Colony-stimulating factors	p. 246
Antinausea drugs used during chemotherapy	p. 247
Drugs used to relieve pain	p. 251
Adjunctive treatments	p. 256
Alternative treatments	p. 256
16. Common Side Effects of Chemotherapy	p. 260
Hair loss	p. 260
Nausea and vomiting	p. 263
Low blood counts	p. 265
Diarrhea	p. 272
Constipation	p. 273
Fatigue and weakness	p. 275
Bed wetting	p. 277
Dental problems	p. 278
Mouth and throat sores	p. 279
Changes in taste and smell	p. 280
Skin and nail problems	p. 281
Learning disabilities	p. 282
Eating problems	p. 282
17. Radiation Therapy	p. 283
Radiation	p. 283
Children who need radiation therapy	p. 284
Questions to ask about radiation therapy	p. 284
Radiation therapy schedules	p. 285
Radiation therapy facilities	p. 285
Radiation oncologist	p. 285
Radiation therapist	p. 286
Immobilization devices	p. 286
Sedation	p. 288
Types of radiation treatments	p. 289
Possible short-term side effects	p. 294
Possible long-term side effects	p. 295
18. Surgery	p. 297
Types of surgery	p. 297
Presurgical evaluation	p. 300
Anesthesia	p. 302
The surgery	p. 303
Discharge	p. 304
19. Bone Marrow and Stem Cell Transplantation	p. 306
Children who need transplants	p. 306
Types of transplants	p. 307
Choosing a transplant center	p. 311
Paying for the transplant	p. 313
The transplant	p. 315
Emotional responses	p. 316
Complications	p. 317
Long-term side effects	p. 320
20. Record Keeping and Finances	p. 324
Keeping medical records	p. 324
Keeping financial records	p. 328
Coping with insurance	p. 333
Sources of financial assistance	p. 336
21. Nutrition	p. 341
Treatment side effects and eating	p. 341
A balanced diet	p. 344
Vitamin supplements	p. 346
Making eating fun and nutritious	p. 346
What kids really eat	p. 352
Parent advice	p. 353
Commercial nutritional supplements	p. 354
Feeding by tube and IV	p. 356
22. School	p. 359
Keeping the school informed	p. 359
Keeping teacher and classmates involved	p. 360
Keeping up with schoolwork	p. 361
Siblings need help, too	p. 362
Returning to school	p. 363
Avoiding communicable diseases	p. 367
Preschoolers	p. 367
Identifying cognitive late effects	p. 369
Record keeping	p. 379
On accepting disabilities	p. 380
The terminally ill child and school	p. 380
23. Siblings	p. 383
Telling the sibling	p. 383
Emotional responses of the siblings	p. 384
Sibling experiences	p. 389
Helping siblings cope	p. 396
Positive outcomes for the siblings	p. 399
24. Feelings, Communication, and Behavior	p. 401
Feelings	p. 401
Communication	p. 403
Common behavioral changes of children	p. 406
Common behavioral changes of parents	p. 411
Improving communication and discipline	p. 416
Checklist for parenting stressed children	p. 420
25. End of Treatment and Beyond	p. 422
Emotions	p. 422
Last day of treatment	p. 423
Catheter removal	p. 423
Ceremonies	p. 425
What is normal?	p. 427
Follow-up care	p. 430
Survivorship	p. 431
Employment	p. 434
The military	p. 436
Insurance	p. 436
26. Relapse	p. 439
Signs and symptoms	p. 439
Emotional responses	p. 441
Deciding on a treatment plan	p. 442
27. Death and Bereavement	p. 447
Transitioning from active treatment	p. 447
Supportive care	p. 450
Dying in the hospital	p. 451
Dying at home	p. 453
Siblings	p. 454
The funeral	p. 454
The role of family and friends	p. 456
Sibling grief	p. 462
Parental grief	p. 463
Looking back after many years	p. 467
Appendices
A. Photographs of Our Children	p. 469
B. Blood Counts and What They Mean	p. 476
C. Resource Organizations	p. 484
D. Books, Online Sites, and Videotapes	p. 501
Index	p. 521

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