Table of Contents
Foreword xv
Introduction xvii
1 Diagnosis 1
Signs and symptoms 1
Where should your child receive treatment? 2
Physical responses 3
Emotional responses 3
The immediate future 9
2 Bone Sarcomas 11
The skeletal system 11
Osteosarcoma 12
Ewing sarcoma family of tumors 21
Information on standard treatments 26
3 Liver Cancers 27
The liver 27
Signs and symptoms 29
Diagnosis 29
Hepatohlastoma 30
Hepatocellular carcinoma 34
Undifferentiated embryonal sarcoma 36
Choriocarcinoma of the liver 37
Liver transplantation 37
Information on standard treatments 40
4 Neuroblastoma 41
The sympathetic nervous system 41
The adrenal glands 41
Who gets neuroblastoma? 42
Signs and symptoms 44
Diagnosis 45
Staging 47
Prognosis 48
Treatment 49
Information on standard treatments 53
Newer treatment approaches 54
5 Retinoblastoma 55
The eve 55
Who gets retinoblastoma? 57
Signs and symptoms 60
Diagnosis and staging 61
Prognosis 63
Treatment 63
Information on standard treatments 69
6 Soft Tissue Sarcomas 71
Muscles and connective tissues 71
Signs and symptoms 72
Diagnosis of soft tissue sarcomas 74
Rhabdomyosarcoma 75
Non-rhabdomyosarcoma soft tissue sarcomas 82
Information on standard treatments 85
7 Kidney Tumors 87
The kidneys 87
Signs and symptoms of kidney tumors 88
Wilms tumor 89
Other types of childhood kidney cancers 96
Information on standard treatments 99
8 Telling Your Child and Others 101
Telling your child 101
Telling the siblings 107
Notifying the family 108
Notifying friends and neighbors 108
Notifying your child's school 109
9 Choosing a Treatment 111
Treatment basics 111
Standard treatment 111
The protocol 112
Clinical trials 113
Making a decision 121
The entire clinical trial document 123
Removing your child from a clinical trial 124
Protocol changes 124
10 Coping with Procedures 125
Planning for procedures 125
Pain management 127
Procedures 133
11 Forming a Partnership with the Medical Team 155
Choosing a hospital 155
The tumor board 158
Finding an oncologist 158
Types of relationships 159
Communication 161
Getting a second opinion 165
Conflict resolution 166
Changing doctors 168
12 Hospitalization 171
The room 171
The floor 173
Food 173
Parking 174
The endless waiting 174
Working with the staff 176
Staying with your child 177
Preventing mistakes 178
Playing 179
13 Venous Catheters 181
External catheter 181
Subcutaneous port 187
Peripherally inserted central catheter 192
Cost 194
Choosing not to use a catheter 195
Making a decision 196
Adhesives 197
14 Surgery 199
Pediatric surgeons 199
Types of surgery 200
Presurgical evaluation 203
Anesthesia 206
The surgery 207
Discharge 208
Rehabilitation 209
15 Chemotherapy 211
How chemotherapy drugs work 211
How chemotherapy drugs are given 212
Dosages 213
Different responses to medications 213
Questions to ask the doctor 214
Guidelines for calling the doctor 215
Chemotherapy drug list 215
Chemotherapy drugs and their possible side effects 216
Prophylactic antibiotics 231
Colony-stimulating factors 232
Antinausea drugs used during chemotherapy 233
Drugs used to relieve pain 238
Topical anesthetics to prevent pain 243
Complementary treatments 244
Alternative treatments 244
16 Common Side Effects of Treatment 247
Bed wetting 247
Changes in taste and smell 249
Constipation 249
Dental problems 250
Diarrhea 251
Fatigue and weakness 253
Hair loss 255
Learning disabilities 258
Low blood cell counts 258
Mouth and throat sores 262
Nausea and vomiting 263
Rehabilitation needs 265
Serious illnesses 267
Skin and nail problems 269
Can pets transmit diseases? 270
17 Radiation Therapy 273
Children who need radiation therapy 273
Types of radiation therapy 274
Questions to ask about radiation treatment 277
Where should your child go for radiation treatment? 277
Radiation oncologist 278
Radiation therapist 278
Immobilization devices 278
Sedation 280
What to expect during a radiation treatment 281
Possible short-term side effects 285
Possible long-term side effects 287
18 Stem Cell Transplantation 289
What is a peripheral blood stem cell transplant? 289
When are transplants necessary? 290
Choosing a transplant center 291
Stem cell harvest and storage 293
The transplant 294
Emotional responses 296
Paying for the transplant 297
Complications after transplant 298
Long-term side effects 302
19 Siblings 305
Emotional responses of the siblings 305
Sibling experiences 311
Helping siblings cope 318
Positive outcomes for the siblings 321
20 Family and Friends 323
Restructuring family life 323
The extended family 330
Friends 335
21 Communication and Behavior 347
Communication 347
Common behavioral changes in children 349
Common behavioral changes in parents 355
Improving communication and discipline 361
22 School 369
Keeping the school informed 369
Keeping the teacher and classmates involved 372
Keeping up with schoolwork 373
Helping siblings 373
Returning to school 374
Avoiding communicable diseases 378
After treatment 378
Federal laws 379
Section 504 of the Rehabilitation Act of 1973 380
Individuals with Disabilities Education Act 380
Individual healthcare plan (IHCP) 390
Your legal rights (Canada) 391
The terminally ill child and school 391
23 Sources of Support 393
Hospital social workers 393
Support groups for parents 394
Online support 396
Support groups for children with cancer 397
Support groups for siblings 398
Parent-to-parent programs 398
Hospital resource rooms 399
Clergy and religious community 400
Individual and family counseling 401
Camps 406
24 Nutrition 409
How treatment affects eating 409
What kids should eat 411
Making eating fun and nutritious 413
Vitamin supplements 417
What kids really eat 418
Dietitian/nutritionist 419
Parent advice 419
Commercial nutritional supplements 420
Feeding by tube and IV 422
25 Medical and Financial Record-keeping 425
Keeping medical records 425
Keeping financial records 429
Coping with insurance 433
Sources of financial assistance 437
26 End of Treatment and Beyond 441
Emotions 441
Last treatment 442
Catheter removal 442
Ceremonies 444
What is normal? 445
Initial follow-up care 448
Long-term follow-up care 449
Treatment summaries 451
Employment 452
Health insurance 453
27 Recurrence 457
Signs and symptoms 457
Emotional responses 459
Goal setting and treatment planning 459
Making a decision about treatment 461
28 Death and Bereavement 465
Transitioning from active treatment 465
Supportive care 469
Dying in the hospital 471
Dying at home 473
Involving siblings 474
The funeral 475
The role of family and friends 476
Sibling grief 482
Parental grief 483
Appendices
A Blood Tests and What They Mean 489
Values for healthy children 489
Values for children on chemotherapy 490
Common blood tests 491
Your child's pattern 495
B Resource Organizations 497
Solid tumor organizations (United States) 498
Solid tumor organizations (Canada) 499
Solid tumor organizations (Australia) 499
Solid tumor organization (Germany) 500
Other service organizations (United States) 500
Other service organizations (Canada) 503
Other service organizations (Australia) 504
Camps 505
Educational and legal support 505
Financial help 507
Free air services (United States) 507
Free air service (Canada) 509
Free air service (Australia) 509
Insurance 509
Medications (low-cost or free) 509
Sports organizations 510
Stem cell transplantation 510
Wish fulfillment organizations (United States) 511
Wish fulfillment organizations (Canada) 512
Wish fulfillment organizations (Australia) 512
Hospice and bereavement (United Stales) 513
Hospice and bereavement (Canada) 513
Hospice and bereavement (Australia) 513
C Books, Websites, and Support Groups 515
How to find the information you need 515
Books 516
Websites 524
Online support groups 527
Index 529
