Childhood Leukemia : A Guide for Families, Friends and Caregivers

by Keene, Nancy

• ISBN13: 9780596500153
• ISBN10: 0596500157
• Edition: 3rd
• Format: Paperback
• Copyright: 2002-05-01
• Publisher: Oreilly & Associates Inc

Summary

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.

Author Biography

Nancy Keene has written or co-authored five health books for families. She is co-creator of the Patient-Centered Guides series and Editor of pediatric titles. Nancy is a tireless advocate for childrens health issues, including pediatric clinical trials, childhood cancer, late effects of childhood cancer treatments, pediatric pain relief, and emotional support for families. She frequently speaks for professional and parent groups and works on/with national pediatric advocacy organizations and committees.

Table of Contents

Foreword	xv
Introduction	xvii
Diagnosis	1	(13)
Signs and symptoms	1	(2)
Where should your child receive treatment?	3	(1)
Physical responses	4	(1)
Emotional responses	4	(7)
The immediate future	11	(3)
Leukemia	14	(27)
Leukemia is a disease of the blood	14	(2)
Who gets leukemia	16	(2)
Diagnosing leukemia	18	(1)
Best treatments for leukemia	19	(1)
Types of leukemia	20	(1)
Acute lymphoblastic leukemia (ALL)	20	(7)
Acute myeloid leukemia (AML)	27	(5)
Chronic myelogenous leukemia (CML)	32	(2)
Juvenile myelomonocytic leukemia (JMML)	34	(1)
Telling your child	35	(6)
Coping with Procedures	41	(26)
Planning for procedures	41	(3)
Pain management	44	(6)
Procedures	50	(17)
Clinical Trials	67	(15)
Enrollment in clinical trials	68	(1)
Standard treatment	68	(1)
Types of clinical trials	69	(1)
Randomization	70	(1)
Design of clinical trials	71	(1)
Supervision of clinical trials	72	(1)
Questions to ask about clinical trials	72	(1)
Informed consent	73	(2)
Assent	75	(1)
The protocol	76	(2)
The entire trial document	78	(1)
Saying no to a clinical trial	79	(1)
Removing a child from a clinical trial	79	(1)
Pros and cons of clinical trials	80	(2)
Family and Friends	82	(24)
The extended family	82	(6)
Friends	88	(10)
Restructuring family life	98	(8)
Forming a Partnership with the Medical Team	106	(17)
The hospital	106	(3)
Finding an oncologist	109	(1)
Choosing a hospital	110	(1)
Types of relationships	110	(2)
Communication	112	(5)
Getting a second opinion	117	(2)
Conflict resolution	119	(2)
Changing doctors	121	(2)
Hospitalization	123	(11)
The room	123	(2)
Food	125	(1)
Parking	126	(1)
The endless waiting	127	(1)
Befriending the staff	128	(1)
Being an advocate for your child	129	(2)
Playing	131	(3)
Venous Catheters	134	(19)
External catheter	134	(6)
Subcutaneous port	140	(5)
Peripherally inserted central catheters	145	(3)
Cost	148	(1)
Choosing not to use a catheter	148	(1)
Making a decision	149	(1)
Adhesives	150	(3)
Sources of Support	153	(18)
Hospital social workers	154	(1)
Support groups for parents	155	(3)
Support groups for children with cancer	158	(1)
Support groups for siblings	159	(1)
Parent-to-parent programs	160	(1)
Hospital resource rooms	161	(1)
Clergy and religious community	161	(2)
Individual and family counseling	163	(5)
Camps	168	(3)
Chemotherapy	171	(39)
How chemotherapy drugs work	171	(1)
How chemotherapy drugs are given	172	(1)
Dosages	173	(1)
Chemotherapy drugs and their possible side effects	173	(21)
Prophylactic antibiotics	194	(1)
Colony-stimulating factors	195	(1)
Antinausea drugs used during chemotherapy	196	(4)
Drugs used to relieve pain	200	(5)
Local anesthetics to prevent pain	205	(1)
Adjunctive treatments	205	(1)
Alternative treatments	206	(4)
Common Side Effects of Chemotherapy	210	(26)
Hair loss	210	(3)
Nausea and vomiting	213	(2)
Low blood counts	215	(8)
Diarrhea	223	(1)
Constipation	224	(2)
Fatigue and weakness	226	(2)
Bed wetting	228	(2)
Dental problems	230	(1)
Mouth and throat sores	231	(1)
Changes in taste and smell	232	(1)
Skin and nail problems	233	(1)
Steroid problems	234	(1)
Learning disabilities	234	(1)
Eating problems	234	(2)
Radiation Therapy	236	(15)
Radiation	236	(6)
Types of radiation treatments	242	(3)
Possible short-term side effects	245	(2)
Possible long-term side effects	247	(4)
Record-Keeping and Finances	251	(18)
Keeping medical records	251	(4)
Keeping financial records	255	(6)
Coping with insurance	261	(4)
Sources of financial assistance	265	(4)
Nutrition	269	(19)
Treatment side effects and eating	269	(3)
A balanced diet	272	(2)
Vitamin supplements	274	(1)
Making eating fun and nutritious	275	(5)
What kids really eat	280	(2)
Parent advice	282	(1)
Commercial nutritional supplements	283	(2)
Feeding by tube and IV	285	(3)
School	288	(25)
Keeping the school informed about treatment	288	(1)
Keeping teacher and classmates involved	289	(1)
Keeping up with schoolwork	290	(2)
Siblings need help, too	292	(1)
Returning to school	292	(4)
Avoiding communicable diseases	296	(1)
What about preschoolers?	297	(2)
Identifying cognitive late effects	299	(11)
Record-keeping	310	(1)
The terminally ill child and school	310	(2)
On accepting disabilities	312	(1)
Siblings	313	(22)
Telling the sibling	313	(2)
Emotional responses of the siblings	315	(5)
Sibling experiences	320	(9)
Helping siblings cope	329	(4)
Positive outcomes for the siblings	333	(2)
Feelings, Communication, and Behavior	335	(22)
Feelings	335	(2)
Communication	337	(2)
Common behavioral changes of children	339	(5)
Common behavioral changes of parents	344	(5)
Improving communication and discipline	349	(8)
End of Treatment and Beyond	357	(26)
Emotional issues	357	(2)
Last day of treatment	359	(2)
Catheter removal	361	(1)
Ceremonies	362	(3)
What is normal?	365	(3)
Follow-up care	368	(8)
Keeping the doctor informed	376	(2)
Employment	378	(2)
The military	380	(1)
Insurance	380	(3)
Relapse	383	(10)
Signs and symptoms	383	(3)
Emotional responses	386	(1)
Deciding on a treatment plan	387	(6)
Stem Cell Transplantation	393	(28)
When are transplants necessary?	393	(2)
Types of transplants	395	(5)
Finding a donor	400	(2)
Choosing a transplant center	402	(2)
Paying for the transplant	404	(2)
Donating marrow	406	(1)
The transplant	407	(2)
Emotional responses	409	(1)
Complications	410	(6)
Long-term side effects	416	(5)
Death and Bereavement	421	(74)
Transitioning from active treatment	421	(4)
Supportive care	425	(1)
Dying in the hospital	426	(2)
Dying at home	428	(1)
Siblings	429	(1)
The funeral	430	(1)
The role of family and friends	431	(7)
Sibling grief	438	(2)
Parental grief	440	(6)
Looking back after many years	446	(3)
Appendices
A. Photographs of Our Children	449	(6)
B. Blood Counts and What They Mean	455	(8)
C. Resource Organizations	463	(13)
D. Books and Online Sites	476	(19)
Index	495