Table of Contents

Chemo Secrets From a Breast Cancer Survivor

Breast Cancer Survivors

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Foreword xv

Introduction xvii

1. Diagnosis 1

Signs and symptoms 1

Where should your child receive treatment? 3

Physical responses 4

Emotional responses 4

The immediate future 11

2. Leukemia 14

Leukemia is a disease of the blood 14

Who gets leukemia 16

Diagnosing leukemia 18

Best treatments for leukemia 19

Types of leukemia 20

Acute lymphoblastic leukemia (ALL) 20

Acute myeloid leukemia (AML) 27

Chronic myelogenous leukemia (CML) 32

Juvenile myelomonocytic leukemia (JMML) 34

Telling your child 35

3. Coping with Procedures 41

Planning for procedures 41

Pain management 44

Procedures 50

4. Clinical Trials 67

Enrollment in clinical trials 68

Standard treatment 68

Types of clinical trials 69

Randomization 70

Design of clinical trials 71

Supervision of clinical trials 72

Questions to ask about clinical trials 72

Informed consent 73

Assent 75

The protocol 76

The entire trial document 78

Saying no to a clinical trial 79

Removing a child from a clinical trial 79

Pros and cons of clinical trials 80

5. Family and Friends 82

The extended family 82

Friends 88

Restructuring family life 98

6. Forming a Partnership with the Medical Team 106

The hospital 106

Finding an oncologist 109

Choosing a hospital 110

Types of relationships 110

Communication 112

Getting a second opinion 117

Conflict resolution 119

Changing doctors 121

7. Hospitalization 123

The room 123

Food 125

Parking 126

The endless waiting 127

Befriending the staff 128

Being an advocate for your child 129

Playing 131

8. Venous Catheters 134

External catheter 134

Subcutaneous port 140

Peripherally inserted central catheters 145

Cost 148

Choosing not to use a catheter 148

Making a decision 149

Adhesives 150

9. Sources of Support 153

Hospital social workers 154

Support groups for parents 155

Support groups for children with cancer 158

Support groups for siblings 159

Parent-to-parent programs 160

Hospital resource rooms 161

Clergy and religious community 161

Individual and family counseling 163

Camps 168

10. Chemotherapy 171

How chemotherapy drugs work 171

How chemotherapy drugs are given 172

Dosages 173

Chemotherapy drugs and their possible side effects 173

Prophylactic antibiotics 194

Colony-stimulating factors 195

Antinausea drugs used during chemotherapy 196

Drugs used to relieve pain 200

Local anesthetics to prevent pain 205

Adjunctive treatments 205

Alternative treatments 206

11. Common Side Effects of Chemotherapy 210

Hair loss 210

Nausea and vomiting 213

Low blood counts 215

Diarrhea 223

Constipation 224

Fatigue and weakness 226

Bed wetting 228

Dental problems 230

Mouth and throat sores 231

Changes in taste and smell 232

Skin and nail problems 233

Steroid problems 234

Learning disabilities 234

Eating problems 234

12. Radiation Therapy 236

Radiation 236

Types of radiation treatments 242

Possible short-term side effects 245

Possible long-term side effects 247

13. Record-Keeping and Finances 251

Keeping medical records 251

Keeping financial records 255

Coping with insurance 261

Sources of financial assistance 265

14. Nutrition 269

Treatment side effects and eating 269

A balanced diet 272

Vitamin supplements 274

Making eating fun and nutritious 275

What kids really eat 280

Parent advice 282

Commercial nutritional supplements 283

Feeding by tube and IV 285

15. School 288

Keeping the school informed about treatment 288

Keeping teacher and classmates involved 289

Keeping up with schoolwork 290

Siblings need help, too 292

Returning to school 292

Avoiding communicable diseases 296

What about preschoolers? 297

Identifying cognitive late effects 299

Record-keeping 310

The terminally ill child and school 310

On accepting disabilities 312

16. Siblings 313

Telling the sibling 313

Emotional responses of the siblings 315

Sibling experiences 320

Helping siblings cope 329

Positive outcomes for the siblings 333

17. Feelings, Communication, and Behavior 335

Feelings 335

Communication 337

Common behavioral changes of children 339

Common behavioral changes of parents 344

Improving communication and discipline 349

18. End of Treatment and Beyond 357

Emotional issues 357

Last day of treatment 359

Catheter removal 361

Ceremonies 362

What is normal? 365

Follow-up care 368

Keeping the doctor informed 376

Employment 378

The military 380

Insurance 380

19. Relapse 383

Signs and symptoms 383

Emotional responses 386

Deciding on a treatment plan 387

20. Stem Cell Transplantation 393

When are transplants necessary? 393

Types of transplants 395

Finding a donor 400

Choosing a transplant center 402

Paying for the transplant 404

Donating marrow 406

The transplant 407

Emotional responses 409

Complications 410

Long-term side effects 416

21. Death and Bereavement 421

Transitioning from active treatment 421

Supportive care 425

Dying in the hospital 426

Dying at home 428

Siblings 429

The funeral 430

The role of family and friends 431

Sibling grief 438

Parental grief 440

Looking back after many years 446

Appendices

A. Photographs of Our Children 449

B. Blood Counts and What They Mean 455

C. Resource Organizations 463

D. Books and Online Sites 476

Index 495

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