Catalogue


Childhood leukemia [electronic resource] : a guide for families, friends & caregivers /
Nancy Keene.
edition
2nd ed.
imprint
Beijing ; Cambridge, MA : O'Reilly, c1999.
description
xix, 494 p. : ill. ; 23 cm.
ISBN
1565926323 (pbk.)
format(s)
Book
Holdings
Subjects
More Details
author
imprint
Beijing ; Cambridge, MA : O'Reilly, c1999.
isbn
1565926323 (pbk.)
restrictions
Licensed for access by U. of T. users.
catalogue key
8487120
 
Includes bibliographical references and index.
A Look Inside
About the Author
Author Affiliation
Nancy Keene is the author of several books on childhood cancer. Her 14 year old daughter was diagnosed with high-risk leukemia at age 3. Nancy was the first chair of the patient advocacy committee of the Children's Oncology Group, a research organization of pediatric cancer specialists from 238 institutions. She is a popular speaker at professional and family conferences on childhood cancer and medical communication
Summaries
Main Description
This most complete parent guide available covers not only detailed and precise medical information about leukemia and the various treatment options, but also 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 leukemia and its treatments. As many parents have already found, advice from "veteran" parents can be a lifeline.
Main Description
This most complete parent guide available covers not only detailed and precise medical information about leukemia and the various treatment options, but also 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 leukemia 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 leukemic 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 life, and tools to be a strong advocate for their child. This second edition contains significant updates to the information on treatments, chemotherapy drugs, bone marrow transplants, coping with side effects, and resources. It also contains a personal treatment summary and long-term follow-up guide for your child to keep as a permanent record.
Main Description
This most complete parent guide available covers not only detailed and precise medical information about leukemia and the various treatment options, but also 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 leukemia and its treatments. As many parents have already found, advice from "veteran" parents can be a lifeline.This third edition contains significant updates to the information on treatments, chemotherapy drugs, bone marrow transplants, coping with side effects, and resources. It also contains a personal treatment summary and long-term follow-up guide for your child to keep as a permanent record.
Unpaid Annotation
The second edition of this complete parent guide not only offers detailed and precise medical information about leukemia, but also day-to-day practical advice on how to cope with procedures, hospitalization, family and friends, school, and social, emotional and financial issues. It contains significant updates on treatments, chemotherapy drugs, bone marrow transplants, coping with side effects, and resources, and features a personal treatment summary and long-term follow-up guide for your child to keep as a permanent record. Obtaining a basic understanding of 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 leukemic child. And stories from "veteran" parents who describe their 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 life, and tools to be a strong advocate for their child.
Table of Contents
Forewordp. xv
Introductionp. xvii
Diagnosisp. 1
Signs and symptomsp. 1
Where should your child receive treatment?p. 3
Physical responsesp. 4
Emotional responsesp. 4
The immediate futurep. 11
Leukemiap. 14
Leukemia is a disease of the bloodp. 14
Who gets leukemiap. 16
Diagnosing leukemiap. 18
Best treatments for leukemiap. 19
Types of leukemiap. 20
Acute lymphoblastic leukemia (ALL)p. 20
Acute myeloid leukemia (AML)p. 27
Chronic myelogenous leukemia (CML)p. 32
Juvenile myelomonocytic leukemia (JMML)p. 34
Telling your childp. 35
Coping with Proceduresp. 41
Planning for proceduresp. 41
Pain managementp. 44
Proceduresp. 50
Clinical Trialsp. 67
Enrollment in clinical trialsp. 68
Standard treatmentp. 68
Types of clinical trialsp. 69
Randomizationp. 70
Design of clinical trialsp. 71
Supervision of clinical trialsp. 72
Questions to ask about clinical trialsp. 72
Informed consentp. 73
Assentp. 75
The protocolp. 76
The entire trial documentp. 78
Saying no to a clinical trialp. 79
Removing a child from a clinical trialp. 79
Pros and cons of clinical trialsp. 80
Family and Friendsp. 82
The extended familyp. 82
Friendsp. 88
Restructuring family lifep. 98
Forming a Partnership with the Medical Teamp. 106
The hospitalp. 106
Finding an oncologistp. 109
Choosing a hospitalp. 110
Types of relationshipsp. 110
Communicationp. 112
Getting a second opinionp. 117
Conflict resolutionp. 119
Changing doctorsp. 121
Hospitalizationp. 123
The roomp. 123
Foodp. 125
Parkingp. 126
The endless waitingp. 127
Befriending the staffp. 128
Being an advocate for your childp. 129
Playingp. 131
Venous Cathetersp. 134
External catheterp. 134
Subcutaneous portp. 140
Peripherally inserted central cathetersp. 145
Costp. 148
Choosing not to use a catheterp. 148
Making a decisionp. 149
Adhesivesp. 150
Sources of Supportp. 153
Hospital social workersp. 154
Support groups for parentsp. 155
Support groups for children with cancerp. 158
Support groups for siblingsp. 159
Parent-to-parent programsp. 160
Hospital resource roomsp. 161
Clergy and religious communityp. 161
Individual and family counselingp. 163
Campsp. 168
Chemotherapyp. 171
How chemotherapy drugs workp. 171
How chemotherapy drugs are givenp. 172
Dosagesp. 173
Chemotherapy drugs and their possible side effectsp. 173
Prophylactic antibioticsp. 194
Colony-stimulating factorsp. 195
Antinausea drugs used during chemotherapyp. 196
Drugs used to relieve painp. 200
Local anesthetics to prevent painp. 205
Adjunctive treatmentsp. 205
Alternative treatmentsp. 206
Common Side Effects of Chemotherapyp. 210
Hair lossp. 210
Nausea and vomitingp. 213
Low blood countsp. 215
Diarrheap. 223
Constipationp. 224
Fatigue and weaknessp. 226
Bed wettingp. 228
Dental problemsp. 230
Mouth and throat soresp. 231
Changes in taste and smellp. 232
Skin and nail problemsp. 233
Steroid problemsp. 234
Learning disabilitiesp. 234
Eating problemsp. 234
Radiation Therapyp. 236
Radiationp. 236
Types of radiation treatmentsp. 242
Possible short-term side effectsp. 245
Possible long-term side effectsp. 247
Record-Keeping and Financesp. 251
Keeping medical recordsp. 251
Keeping financial recordsp. 255
Coping with insurancep. 261
Sources of financial assistancep. 265
Nutritionp. 269
Treatment side effects and eatingp. 269
A balanced dietp. 272
Vitamin supplementsp. 274
Making eating fun and nutritiousp. 275
What kids really eatp. 280
Parent advicep. 282
Commercial nutritional supplementsp. 283
Feeding by tube and IVp. 285
Schoolp. 288
Keeping the school informed about treatmentp. 288
Keeping teacher and classmates involvedp. 289
Keeping up with schoolworkp. 290
Siblings need help, toop. 292
Returning to schoolp. 292
Avoiding communicable diseasesp. 296
What about preschoolers?p. 297
Identifying cognitive late effectsp. 299
Record-keepingp. 310
The terminally ill child and schoolp. 310
On acepting disabilitiesp. 312
Siblingsp. 313
Telling the siblingp. 313
Emotional responses of the siblingsp. 315
Sibling experiencesp. 320
Helping siblings copep. 329
Positive outcomes for the siblingsp. 333
Feelings, Communication, and Behaviorp. 335
Feelingsp. 335
Communicationp. 337
Common behavioral changes of childrenp. 339
Common behavioral changes of parentsp. 344
Improving communication and disciplinep. 349
End of Treatment and Beyondp. 357
Emotional issuesp. 357
Last day of treatmentp. 359
Catheter removalp. 361
Ceremoniesp. 362
What is normal?p. 365
Follow-up carep. 368
Keeping the doctor informedp. 376
Employmentp. 378
The militaryp. 380
Insurancep. 380
Relapsep. 383
Signs and symptomsp. 383
Emotional responsesp. 386
Deciding on a treatment planp. 387
Stem Cell Transplantationp. 393
When are transplants necessary?p. 393
Types of transplantsp. 395
Finding a donorp. 400
Choosing a transplant centerp. 402
Paying for the transplantp. 404
Donating marrowp. 406
The transplantp. 407
Emotional responsesp. 409
Complicationsp. 410
Long-term side effectsp. 416
Death and Bereavementp. 421
Transitioning from active treatmentp. 421
Supportive carep. 425
Dying in the hospitalp. 426
Dying at homep. 428
Siblingsp. 429
The funeralp. 430
The role of family and friendsp. 431
Sibling griefp. 438
Parental griefp. 440
Looking back after many yearsp. 446
Appendices
Photographs of Our Childrenp. 449
Blood Counts and What They Meanp. 455
Resource Organizationsp. 463
Books and Online Sitesp. 476
Indexp. 495
Table of Contents provided by Syndetics. All Rights Reserved.

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