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Document Resume Ed 208 605 Ec 140 020 Title DOCUMENT RESUME ED 208 605 EC 140 020 TITLE Maintaining a Normal Life: Proceedings of the National Conference far Parents of Children with Cancer (1st, Arlingt4n, Virginia, June 23-25, 1978). INSTITUTION National Cancer Inst.(NIB), Bethesda, Md. REPORT NO NIH-80-2176 PUB DATE Jun 80 NOTE 285p. EDRS PRICE MF01/PC12 Plus Postage. DESCRIPTORS *Adolescents; *Cancer; Emotional Adjustment;*Ethics; *Medical Services; Nutrition; Parent Child Relationship; *Parent Role; Special Health Problems ABSTRACT Twenty presentations from a 1978 conferencefor parents of children with cancer focus onthe teenager and cancer, long term survival of children, the parentsand treatment, and practical problems Jnvolved. The following papersand authors are represented: "The Role of the Patient Family" (Clark,Fcx-Kolenda): "How the Child Perceives Illness and Death"(S. Hostler); "Treatment" (D. Schwartz); "Pastoral Care and thePsychosocial Needs of the Teenager Facing Death" (F. Bender);"Coping -- Teenage Panel Discussion" (Sister Margaret Weeke): "RecentDevelopments in the Treatment of Childhood Cancer" (D.Poplack); "Blood Needs of the Child with Cancer" (C. Jackson); "ProlongedRemissions" (A. Batmen); "Education--The Issues and the Answers" (J.Crockett); "The Child Off Treatment" (N. Wollner): "The Childwith Cancer -- Achieving Peace of Mind" (G. Jampolsky) ; The Parent as Part of the TreatmentProcess" (J. Wilbur): "Panel Discussion--Parents asProfessional Members of the Team" (M. Allen, et al.):"Parental Interrelationships in Living with Pediatric Cancer" (G. Morrow);"Discipline and Training" (R. Lucas): "Cancer and Nutrition" (R.Henkin) ; "The Cost of Cancer" (J. Black) : "The Terminal Child, Relapse" (E,, Forman); *dome Care for the Child with Cancer" (I. Martinson): and"Medical/Ethical Problems Associated with Childhood Cancer" (L.Eamerglick). (CL) *********************************************************************** Reproductions supplied by EDRS are the best that canbe made from the original document. *********************************************************************** U S DEPARTMENT OF EDUCATION NATIONAL INSTITUTE OF EOUCATION EDUTTATIONAL RESOURCES INFORMATION CENTER IERICI LIN11is do, ornenthas been reproduced as re, ,wed from the ite,(SO,Of organization orKenating it Minorhanges kayo keen made to troreove IhT0 reproduction c,aid, OD Pole, of .iew oftreon,btated in th,,Tuto rytent rt stqlt JI NIL tJOSiM)r1 ur pt)lit y (NJ Proceedings of the CZ) First National Conference for Parents of Children with Cancer "Maintaining a Normal Life" June 23-25, 1978 Marymount College, Arlington, Virginia Sponsored by the Candlelighters Foundation Proceedings reported and made available by the National Cancer Institute U S DEPARTMENT OF HEALTH AND HUMAN SERVICES Public Health Service National Institutes of Health National Cancer Institute Bethesda Maryland 20205 NIH Publication No 80-2176 June 1980 2 CONTENTS I. About Candlelighters 1 II. About the Conference 5 III. Introduction Grace Powers Monaco, J.D. 9 IV. The Role of the Patient Family R. Lee Clark, M.D. and B.J. Fox-Kolenda, B.A. 11 V. How the Child Perceives Illness and Death Sharon Hostler, M.D. 19 VI. THE TEENAGER AND CANCER 29 1. Treatment Donald B. Schwartz, M.D. 29 Questions and Answers 38 2. Pastoral Care and the Psychosocial Needs of the Teenager Facing Death Fred W. Bender 41 Questions and Answers 50 3. Coping: Teenage Panel Discussion Sister Margaret Weeke, SSM - Moderator 51 VII. LONG-TERM SURVIVAL OF CHILDREN 89 1. Recent Developments in the Treatment of Childhood Cancer David G. Poplack, M.D. 89 2. Blood Needs of the Child with Cancer Carmault B. Jackson, Jr., M.D. 95 3. Prolonged Remissions Aaron R. Rausen, M.D. 99 4. Education: The Issues and the Answers June Crockett 111 Panel Discussion 114 5. The Child Off Treatment Norma Wollner, M.D. 119 iii -de 125 6. Questions and Answers 7. Panel Discussion: Parents' Experiences 137 with Long-Term Remissions Achieving Peace of Mind VIII. The Child with Cancer -- Gerifd G. Jampolsky, M.D. 143 151 Questior Answers 155 IX. THE PARENTS AND TREATMENT Treatment Process 1. The Parent as Part of the Jordan R. Wilbur, M.D. 155 2. Panel Discussion: Parents as Professional Members of the Team Mary Ann Allen 163 167 Karen Briscoe Jeanette Charniak 169 Genie W. Schweers 173 in Living with 3. Parental Interrelationships Pediatric Cancer 175 Gary Morrow, Ph.D. 187 4. Questions and Answers 197 X. PRACTICAL PROBLEMS 1. Discy)ne and Training RicharTB. Lucas, Ph.D. 197 Questions and Answers 205 2. Cancer and Nutrition Robert I. Henkin, M.D. 209 Questions and Answers 215 3. The Cost of Cancer 227 Jan B Black XI, The Terminal Child,Relepse fin N. M.D. 233 240 Questions and Answers Home Care for the Childwith Cancer XII. 243 Ida M. Martinson, RN, Ph.D. 270 Parental Experiences with DyingChildren iv XIII. Medical/Ethical Problems Associated with U:ldhood cancer Leonard J. Emmerglick, M.D., J.D. 277 Appendix A -- Conference Participants 283 1. Speakers and Moderators 287 2. Panel Members Appendix B -- Annotated Bibliography Richard Lucas, Ph.D. 289 Appendix C Bibliography Related to Death Fred W. Bender 293 5 I. About Candle lighters We are an international organization of parent groups whose children have or have had cancer. Believing "it is better to light one candle than to curse the darkness," we share these goals- - to identify patient and family needs so that medical and social systems respond adequately to seek consistent and sufficient research funding to create networks linking parent to parent, family to family, and group to group to exchange information on research, treatment, medical institutions, and community resources to provide guidance in coping with cancer's effects on a child, on parents, on a family to ease frustrations and fears through the sharing of common experiences 1 to break down the social isolationof families to become an emotional support systemof "second families" to each other When a child has cancer, the wholefamily is affected. While the child lives with the stress of sicknes',and treatment along with the ordinary pressures of childhood,parents strive to keep family life as normal as possible. The problems of coping are tell? How many and complex. To whom, and how much do parents should treatment, discipline,nutrition, neighbors, family, school, finances be handled? Candlelighters parents share the shock ofdiagnosis, the concern about treatment, the anxiety of waiting,the despair at relapse, the grief at death, thedespondency of loss, the hope of re- mission, the joy of cure. Candlelighters support one another in timesof need--at diagno- sis, before surgery, duringhospitalization, upon relapse, as death approaches, or when a childis taken off drugs. Sometimes, the need may be to helpand comfor,, someone else. Candlelighters care in the unique wayonly parents of other young cancer patients can. Family Support Locally, Candlelighters provide aforum where parents share questions and answers aboutfamilies living with a young cancer patient. Groups sponsor 24-hour crisislines, buddy systems, parent- to-parent ::ounseling, professionalcounseling, and self-help where families meet groups. Candlelighters hold social functions and relax in a supportive,nonthreatening setting. Groups may also offer babys;tting ortransportation; serve as clinic waiting-room aides; sponsorblood banks; foster immune programs, wig banks, in-hospitalvisitors, or the establishment of Ronald McDonald residences forfamilies of children on extended care away from home. 2 Information Services Local groups present speakers andpanels on childhood cancer, maintain libraries and speakers' bureaus,publish ne:sletters and handbooks of local resources, hold regionalconferences, and ad- serve on community boardssuch as American Cancer Society visory committees. Membership Candlelighters includes over 100 parent groupsin the United States, Canada, and Europe. In addition to parents, membershipis open to anyone interested in the control and care ofchildhood cancer and in meeting the needs of families facing thisexperience. Medical and psychosocial professionals have joinedCandlelighters. Some groups have youth auxiliariesfor teenage cancer patients and teenage siblings of childrenwith cancer. Minna Nathanson 3 II. About the Conference Starting in 1970, almost simultaneous with thebeginnings of the National Parents' movement, all letters and phonecalls carried the same message from parents: How can we, as parents, best show the "cancer community" at large the things wefind most helpful in the treatment and support of families?How can we also achieve the added benefit of meeting each otherface to face and exchanging views? Our answer was a National Parents Conference, bringing together a representative cross-sectionof parents to present their picture of the "caring" system thataffected their children and to give parents an opportunity to voice the ques- tions that they have about t'dt system. How.was this achieved? Initially, trough the mail. Then finally in 1976 a planning committee met withrepresentatives of parents' groups from many states and the skeleton planof the conference was laid out. Since it was important that the first conference include something for everybody, theconference was planned as a smorgasbord. The Foundation is not a fund-raising organization. Hence, the first question was: Could we have a conference without funds? The answer: We could ask the 'rofessionals and parentsattending the conference to pay their ova way andomit honorariums. We are indebted
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