Childhood Cancer

by Janes-Hodder, Honna; Keene, Nancy

• ISBN13: 9780596500146
• ISBN10: 0596500149
• Edition: 2nd
• Format: Paperback
• Copyright: 2002-08-01
• Publisher: Childhood Cancer Guides

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. Covers solid tumor cancers including: Neuroblastoma, Wilms tumour, liver cancers, soft tissue sarcomas, bone sarcomas, and retinoblastoma.

Author Biography

Honna Janes-Hodder's youngest son Matthew was diagnosed with neuroblastoma on his third birthday, and passed away at age seven on September 3, 1997. She loved, cared for, and advocated for Matthew during his long struggle with cancer. She lives with her husband, 14-year-old son, and 11-year-old daughter in beautiful Paradise, Newfoundland, and Labrador, Canada. Honna is founder of ChildCan, The Childhood Cancer Research Association of Newfoundland and Labrador, Inc., and president of the International Pediatric Cancer Alliance, Inc. Honna manages most of the pediatric discussion groups for ACOR, the Association of Cancer Online Resources, Inc. ACOR, based in New York, provides accurate and timely medical support and information for all those affected by cancer, in both the pediatric and adult communities. She is the administrator of five online discussion groups, providing support and reliable information to families dealing with childhood cancers globally. In addition, Honna sits on the Public Issues Committee for the Newfoundland and Labrador division of the Canadian Cancer Society and writes a regular health section for a national newspaper in Canada. Honna spends a great deal of time advocating on behalf of children diagnosed with cancer. She does not view this as a job, but as an important part of her identity. Honna attends Memorial University of Newfoundland as a part-time student when time permits, working toward a Ph.D. in biochemistry. Honna and Nancy were two of the first five people appointed as patient advocates to the Children's Cancer Group (CCG), a research organization consisting of pediatric cancer specialists from Canada, the United States, and Australia. They attend CCG meetings and facilitate communication between CCG investigators and the patient community.

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	xi
Introduction	xiii
Diagnosis	1	(11)
Signs and symptoms	1	(1)
Where should your child receive treatment?	2	(1)
Physical responses	3	(1)
Emotional responses	3	(7)
The immediate future	10	(2)
Coping with Procedures	12	(29)
Planning for procedures	12	(3)
Pain management	15	(5)
Procedures	20	(21)
Family and Friends	41	(26)
The extended family	41	(2)
Grandparents	43	(4)
Friends	47	(11)
Restructuring family life	58	(9)
Forming a Partnership with the Medical Team	67	(16)
The hospital	67	(2)
Finding an oncologist	69	(1)
Choosing a hospital	70	(1)
Types of relationships	71	(2)
Communication	73	(4)
Getting a second opinion	77	(1)
Conflict resolution	78	(2)
Changing doctors	80	(3)
Clinical Trials	83	(13)
Enrollment in clinical trials	83	(1)
Standard treatment	84	(1)
Types of clinical trials	84	(1)
Randomization	85	(1)
Design of clinical trials	86	(1)
Supervision of clinical trials	87	(1)
Questions to ask about clinical trials	87	(1)
Informed consent	88	(2)
Assent	90	(1)
The protocol	91	(2)
The entire trial document	93	(1)
Saying no to a clinical trial	94	(1)
Removing a child from a clinical trial	94	(1)
Points to ponder	94	(2)
Venous Catheters	96	(18)
External catheter	96	(6)
Subcutaneous port	102	(4)
Peripherally inserted central catheters	106	(3)
Cost	109	(1)
Choosing not to use a catheter	110	(1)
Making a decision	110	(2)
Adhesives	112	(2)
Hospitalization	114	(10)
The room	114	(2)
Food	116	(1)
Parking	117	(1)
The endless waiting	117	(2)
Befriending the staff	119	(1)
Being an advocate for your child	119	(3)
Playing	122	(2)
Neuroblastoma	124	(13)
The sympathetic nervous system	124	(1)
Who gets neuroblastoma?	125	(1)
Signs and symptoms	126	(1)
Diagnosis	127	(3)
Treatment	130	(7)
Wilms Tumor	137	(13)
The kidneys	137	(1)
Who gets Wilms tumor?	138	(2)
Signs and symptoms	140	(1)
Diagnosis	141	(2)
Treatment	143	(4)
Other types of childhood kidney cancers	147	(3)
Soft Tissue Sarcomas	150	(14)
Muscles and connective tissues	150	(1)
Rhabdomyosarcoma	151	(1)
Who gets rhabdomyosarcoma?	152	(1)
Rhabdomyosarcoma signs and symptoms	153	(1)
Diagnosis of rhabdomyosarcoma	154	(3)
Treatment of rhabdomyosarcoma	157	(3)
Other soft tissue sarcomas	160	(3)
Newest treatment options	163	(1)
Bone Sarcomas	164	(18)
The skeletal system	164	(1)
Osteosarcoma	165	(1)
Who gets osteosarcoma?	165	(1)
Osteosarcoma signs and symptoms	166	(1)
Diagnosis of osteosarcoma	167	(2)
Treatment of osteosarcoma	169	(5)
Ewing's sarcoma family of tumors	174	(2)
Diagnosis of ESFT	176	(1)
Treatment of ESFT	177	(5)
Liver Cancers	182	(11)
The liver	182	(2)
Who gets liver cancer?	184	(1)
Signs and symptoms	185	(1)
Diagnosis	185	(1)
Staging	186	(1)
Prognostic indicators	187	(1)
Treatment	188	(5)
Retinoblastoma	193	(13)
The eye	193	(1)
Who gets retinoblastoma?	194	(3)
Signs and symptoms	197	(1)
Diagnosis and staging	198	(1)
Prognosis	199	(1)
Treatment	200	(6)
Sources of Support	206	(17)
Hospital social workers	206	(2)
Support groups for parents	208	(2)
Support groups for children with cancer	210	(1)
Support groups for siblings	211	(1)
Parent-to-parent programs	211	(1)
Hospital resource rooms	212	(1)
Clergy and religious community	213	(1)
Individual and family counseling	214	(6)
Camps	220	(3)
Chemotherapy	223	(37)
How chemotherapy drugs work	223	(1)
How chemotherapy drugs are given	224	(1)
Dosages	225	(1)
Chemotherapy drugs and their possible side effects	225	(21)
Colony-stimulating factors	246	(1)
Antinausea drugs used during chemotherapy	247	(4)
Drugs used to relieve pain	251	(5)
Adjunctive treatments	256	(1)
Alternative treatments	256	(4)
Common Side Effects of Chemotherapy	260	(23)
Hair loss	260	(3)
Nausea and vomiting	263	(2)
Low blood counts	265	(7)
Diarrhea	272	(1)
Constipation	273	(2)
Fatigue and weakness	275	(2)
Bed wetting	277	(1)
Dental problems	278	(1)
Mouth and throat sores	279	(1)
Changes in taste and smell	280	(1)
Skin and nail problems	281	(1)
Learning disabilities	282	(1)
Eating problems	282	(1)
Radiation Therapy	283	(14)
Radiation	283	(1)
Children who need radiation therapy	284	(1)
Questions to ask about radiation therapy	284	(1)
Radiation therapy schedules	285	(1)
Radiation therapy facilities	285	(1)
Radiation oncologist	285	(1)
Radiation therapist	286	(1)
Immobilization devices	286	(2)
Sedation	288	(1)
Types of radiation treatments	289	(5)
Possible short-term side effects	294	(1)
Possible long-term side effects	295	(2)
Surgery	297	(9)
Types of surgery	297	(3)
Presurgical evaluation	300	(2)
Anesthesia	302	(1)
The surgery	303	(1)
Discharge	304	(2)
Bone Marrow and Stem Cell Transplantation	306	(18)
Children who need transplants	306	(1)
Types of transplants	307	(4)
Choosing a transplant center	311	(2)
Paying for the transplant	313	(2)
The transplant	315	(1)
Emotional responses	316	(1)
Complications	317	(3)
Long-term side effects	320	(4)
Record Keeping and Finances	324	(17)
Keeping medical records	324	(4)
Keeping financial records	328	(5)
Coping with insurance	333	(3)
Sources of financial assistance	336	(5)
Nutrition	341	(18)
Treatment side effects and eating	341	(3)
A balanced diet	344	(2)
Vitamin supplements	346	(1)
Making eating fun and nutritious	346	(6)
What kids really eat	352	(1)
Parent advice	353	(1)
Commercial nutritional supplements	354	(2)
Feeding by tube and IV	356	(3)
School	359	(24)
Keeping the school informed	359	(1)
Keeping teacher and classmates involved	360	(1)
Keeping up with schoolwork	361	(1)
Siblings need help, too	362	(1)
Returning to school	363	(4)
Avoiding communicable diseases	367	(1)
Preschoolers	367	(2)
Identifying cognitive late effects	369	(10)
Record keeping	379	(1)
On accepting disabilities	380	(1)
The terminally ill child and school	380	(3)
Siblings	383	(18)
Telling the sibling	383	(1)
Emotional responses of the siblings	384	(5)
Sibling experiences	389	(7)
Helping siblings cope	396	(3)
Positive outcomes for the siblings	399	(2)
Feelings, Communication, and Behavior	401	(21)
Feelings	401	(2)
Communication	403	(3)
Common behavioral changes of children	406	(5)
Common behavioral changes of parents	411	(5)
Improving communication and discipline	416	(4)
Checklist for parenting stressed children	420	(2)
End of Treatment and Beyond	422	(17)
Emotions	422	(1)
Last day of treatment	423	(1)
Catheter removal	423	(2)
Ceremonies	425	(2)
What is normal?	427	(3)
Follow-up care	430	(1)
Survivorship	431	(3)
Employment	434	(2)
The military	436	(1)
Insurance	436	(3)
Relapse	439	(8)
Signs and symptoms	439	(2)
Emotional responses	441	(1)
Deciding on a treatment plan	442	(5)
Death and Bereavement	447	(74)
Transitioning from active treatment	447	(3)
Supportive care	450	(1)
Dying in the hospital	451	(2)
Dying at home	453	(1)
Siblings	454	(1)
The funeral	454	(2)
The role of family and friends	456	(6)
Sibling grief	462	(1)
Parental grief	463	(4)
Looking back after many years	467	(2)
Appendices
A. Photographs of Our Children	469	(7)
B. Blood Counts and What They Mean	476	(8)
C. Resource Organizations	484	(17)
D. Books, Online Sites, and Videotapes	501	(20)
Index	521