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Pediatric Psycho Oncology A Quick Reference on the
Psychosocial Dimensions of Cancer Symptom
Management 2nd Edition Lori S. Wiener Digital Instant
Download
Author(s): Lori S. Wiener, Maryland Pao, Anne E. Kazak , Mary Jo Kupst,
Andrea Farkas Patenaude, Robert J. Arceci
ISBN(s): 9780199335114, 0199335117
Edition: 2
File Details: PDF, 11.97 MB
Year: 2015
Language: english
Pediatric
Psycho-Oncology
APOS CLINICAL REFERENCE HANDBOOKS
Psycho-Oncology: A Quick Reference on the Psychosocial Dimensions of Cancer
Symptom Management, 2nd edition, Jimmie C. Holland, Mitch Golant,
Donna B. Greenberg, Mary K. Hughes, Jon A. Levenson, Matthew
J. Loscalzo, William F. Pirl
Pediatric Psycho-Oncology: A Quick Reference on the Psychosocial Dimensions
of Cancer Symptom Management, 2nd edition, Lori Wiener, Maryland Pao,
Anne E. Kazak, Mary Jo Kupst, Andrea Farkas Patenaude
Geriatric Psycho-Oncology: A Quick Reference on the Psychosocial Dimensions
of Cancer Symptom Management, Jimmie C. Holland, Talia Weiss Wiesel,
Christian J. Nelson, Andrew J. Roth, Yesne Alici
Pediatric
Psycho-Oncology
A Quick Reference on the Psychosocial
Dimensions of Cancer Symptom
Management
second edition
Edited by
Lori Wiener, PhD, DCSW
Maryland Pao, MD
Anne E. Kazak, PhD, ABPP
Mary Jo Kupst, PhD
Andrea Farkas Patenaude, PhD
Robert J. Arceci, MD, PhD
1
1
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Library of Congress Cataloging-in-Publication Data
Quick reference for pediatric oncology clinicians
Pediatric psycho-oncology : a quick reference on the psychosocial dimensions of
cancer symptom management/edited by Lori Wiener, Maryland Pao, Anne E. Kazak,
Mary Jo Kupst, Andrea Farkas Patenaude; with the American Psycho-Social Oncology
Society.—2nd edition.
p. ; cm.
Preceded by: Quick reference for pediatric oncology clinicians/senior editors, Lori
Wiener, Maryland Pao. c2009. Includes bibliographical references and index.
ISBN 978–0–9–9335–4 (alk. paper)
I. Wiener, Lori, editor. II. Pao, Maryland, editor. III. Kazak, Anne E., editor.
IV. Kupst, Mary Jo, editor. V. Patenaude, Andrea Farkas, editor. VI. American
Psychosocial Oncology Society. VII. Title.
[DNLM: . Child. 2. Neoplasms—psychology. 3. Age Factors. 4. Family
Relations. 5. Neoplasms—therapy. 6. Social Support. QZ 275]
RC28.C4
68.92′994—dc23
204022636
This material is not intended to be, and should not be considered, a substitute for medical
or other professional advice. Treatment for the conditions described in this material is
highly dependent on the individual circumstances. And, while this material is designed to
offer accurate information with respect to the subject matter covered and to be current
as of the time it was written, research and knowledge about medical and health issues
is constantly evolving and dose schedules for medications are being revised continually,
with new side effects recognized and accounted for regularly. Readers must therefore
always check the product information and clinical procedures with the most up-to-date
published product information and data sheets provided by the manufacturers and the
most recent codes of conduct and safety regulation. The publisher and the authors make
no representations or warranties to readers, express or implied, as to the accuracy or
completeness of this material. Without limiting the foregoing, the publisher and the authors
make no representations or warranties as to the accuracy or efficacy of the drug dosages
mentioned in the material. The authors and the publisher do not accept, and expressly
disclaim, any responsibility for any liability, loss or risk that may be claimed or incurred as a
consequence of the use and/or application of any of the contents of this material.
9 8 7 6 5 4 3 2
Printed in the United States of America
on acid-free paper
This book is dedicated to all children and families affected by pediatric can-
cer. Those we have worked with have taught us what we are now sharing
with others in this volume.
LW
MP
AEK
MJK
AFP
RJA
Contents
Foreword xi
Preface xiii
Acknowledgments xv
Contributors xvii
Introduction xxiii
Jimmie C. Holland
I. Cancers of Childhood
. Leukemias and Lymphomas 3
Nirali N. Shah and Alan S. Wayne
2. Neuroblastoma 11
Giselle Saulnier Sholler
3. Wilms Tumor 19
vii
Jeffrey S. Dome
4. Retinoblastoma 27
Debra L. Friedman and Anna T. Meadows
5. Sarcomas and Other Solid Tumors 31
Melinda Merchant and Matthew Wright
6. Tumors of the Central Nervous System 39
Katherine E. Warren
II. Hereditary Cancers 47
7. Hereditary Cancer Syndromes 49
David Malkin
8. Genetic Counseling for Hereditary Cancer in
Childhood 59
Anu Chittenden and Jaclyn Schienda
9. Psychosocial Aspects of Pediatric Hereditary Cancer
Syndromes 65
Andrea Farkas Patenaude
Contents III. Specific Symptom Management 77
0. Nausea, Vomiting, Anorexia, and Fatigue 79
Marilyn J. Hockenberry and Cheryl C. Rodgers
. Pain 91
Lonnie Zeltzer and Elliot J. Krane
2. Anxiety and Depression 105
Maryland Pao and Anne E. Kazak
3. Fertility and Sexuality 119
Jennifer M. Levine, Kevin C. Oeffinger, Jennifer S. Ford, and
Charles A. Sklar
4. Psychiatric Emergencies 127
Travis Mickelson, D. Richard Martini, and Maryland Pao
IV. Treatment Issues and Interventions 39
5. Medical Aspects of Transplantation 141
Allistair Abraham and Terry J. Fry
6. Psychosocial Issues for Transplant Patients and
viii
Donors 149
Sean Phipps
7. Medication Adherence 157
Ahna L. H. Pai and Dennis Drotar
8. Cognitive Sequelae of Cancer Treatment 165
Brian P. Daly and Ronald T. Brown
9. Psychotherapeutic Interventions 177
Barbara Sourkes, Anne E. Kazak, and Lori Wiener
20. Electronic Interventions 187
Kristina K. Hardy and Martha A. Grootenhuis
2. Integrative Oncology 199
Olle Jane Z. Sahler, Hilary McClafferty, and Marilyn A. Rosen
V. Communication and Supportive Care Considerations 219
22. Talking to Children and Adolescents about Cancer 221
Joanna Breyer
23. Coping with Pediatric Cancer 241
Mary Jo Kupst and Andrea Farkas Patenaude
24. Impact of Cancer on Family and Siblings 253
Avi Madan-Swain and Pamela S. Hinds
25. Special Considerations in Working with Families 271
Contents
Lori Wiener, Steven K. Reader, and Anne E. Kazak
26. Spiritual and Religious Considerations 281
Mary Lynn Dell and Daniel H. Grossoehme
27. School and Peer Relationships 291
Robert B. Noll and William M. Bukowski
28. School and Academic Planning 297
Ernest R. Katz
VI. Special Issues in Pediatric Oncology 31
29. Ethical Issues in Pediatric Oncology 313
Julia A. Kearney and Marguerite S. Lederberg
30. Integrating Palliative Care 325
Sarah Friebert, Todd Dalberg, and Lori Wiener
3. Caring for International Patients 335
Maria E. Radulovic
32. Social Media and Health Care 345
ix
Rachel A. Tunick and Sarah R. Brand
33. Pediatric Cancer Survivors: Moving Beyond Cure 357
Lisa A. Schwartz, Julia H. Rowland, and Aziza Shad
xi
acute leukemia. The role of combination chemotherapy and the prospect
for preventing central nervous system relapse with prophylactic radiation
therapy was being defined and providing hope. I found myself drawn to the
excitement of working in a field of medicine that was changing rapidly and
where research could impact patient outcomes in meaningful ways. Having
been educated in a medical school that had defined the biopsychosocial
model of care, I also appreciated the importance of combining psycho-
social care with medical treatment. In many ways, this challenging area of
medicine brought together all my interests and passions—basic and clini-
cal research, challenging multisystem medical disease management, along
with interdisciplinary psychosocial care and intervention. I don’t think I ever
questioned whether a child diagnosed with cancer should receive psycho-
social support; I believed that this was necessary for every child and family
to have comprehensive care.
Over the decades that have followed my early entry into the field of pedi-
atric oncology, I have witnessed, over and over again, the impact of serious
disease on the child, adolescent, and young adult. In tandem, the impact of a
serious childhood disorder on the parents, siblings, grandparents, relatives,
and the community of friends is also abundantly apparent. It is implausible
to think that any child or family facing the diagnosis of cancer will be unaf-
fected emotionally and psychologically. Regardless of one’s background,
resources, social strata, professional status or knowledge, every child and
every family requires help and support. No amount of inner strength or
resilience can cope with the impact of cancer and its treatment without
psychosocial support. From my perspective, psychosocial support is as
important as medical care and treatment—both are needed to successfully
Foreword manage catastrophic disease. I was fortunate to witness this over and over
again during the many years that I worked at the National Cancer Institute
where we formed a team with social workers, psychologists, recreation
therapists, and others to bring our respective skills and knowledge into
a compassionate unison on behalf of the children and families we treated.
I have long viewed the management of fears and feelings of children, ado-
lescents—no matter how resistant—and young adults, about their illness
and its consequences, and the ability to support the child within the family
constellation and community not as ideal care (even though it is) but as the
standard of care for the child with cancer.
Coping with cancer requires the ability to face the prospect of death
along with numerous physical and emotional alterations. Learning how to
cope with these challenges is a prerequisite to survival and should be part
of every program of care for children with cancer (and I believe adults with
cancer as well).
Since I began, much research has been brought to bear on many impor-
tant aspects of caring for children with cancer including developmental and
educational needs, impact on family, and the adverse psychological and
social sequelae of cancer and its therapy. Many psychosocial specialists and
researchers have dedicated their lives and careers to caring for children
and families with cancer and catastrophic diseases. Their work has con-
tributed as much to the quality survival of children as has the medical care
xii
xiii
The chapters may also help pediatric oncologists and nurses recognize
when it may be best to refer patients to their behavioral health colleagues.
We hope it will be useful for those who are establishing pediatric oncology
services or adding psychosocial components to existing clinics to recognize
the range of ways in which psychological services are important for the pro-
vision of comprehensive care to children and families.
All the chapters have been updated since the first edition, and they cover
a wide range of topics including psychological aspects of particular pediatric
cancers and their treatments; how to talk to a child and family at critical
times during the disease course; new information in the area of genomics
and genetic testing; individual, family, educational, psychological and psychi-
atric interventions; and how to assist the international family. This second
edition includes additional clinically relevant chapters on stem cell trans-
plantation, social media, and electronic psychosocial interventions. Each
chapter recognizes the necessity of embracing an interdisciplinary approach
to ensure that each child with cancer has the best opportunity for a satisfy-
ing, productive life and, when cure is not possible, that the period of time
prior to, at the time of, and following death occurs with as much dignity as
possible for the child and family.
We have assembled the handbook in concise, practical, and highly read-
able brief chapters. The “bullet point” format is to facilitate a quick read.
We anticipate most clinicians will turn to specific chapters for guidance on
managing the psychosocial care of their patients. Some readers, however,
may read this book more comprehensively. Such readers may find that simi-
lar issues such as diagnosis, treatment completion, and survivorship are
addressed in multiple chapters. Each chapter stands on its own, but we have
Preface cross-referenced places in other chapters where similar issues are dealt
with in depth to avoid unnecessary repetition.
We recognize that not every child and family will have access to a full
range of psychosocial services. We have described state-of-the-art care
as practiced in cancer centers that have the greatest resources, and we
acknowledge that providers elsewhere will know how best to adapt these
principles to their own circumstances, possibly through developing referral
connections to trusted mental health colleagues in their community.
We hope this book conveys and extends the warm spirit of collegiality
and mutual respect that exists in many centers and regions between pedi-
atric oncology clinicians and mental health professionals who have produc-
tively worked together over the past 30 years.
We recognize that children are cared for by adults with many different
relationships to them. We use the term parents to refer to all adult caregiv-
ers who have parenting responsibilities.
xv
the road for the field of Pediatric Psychooncology to develop, expand,
and thrive.
Contributors
xvii
Director of the Ron Matricaria Dana-Farber Cancer Institute
Institute of Molecular Medicine Boston, Massachusetts
Phoenix Children’s Hospital Todd Dalberg, DO
Department of Child Health
Division of Pediatric
University of Arizona College
Hematology-Oncology
of Medicine
Oregon Health and Science
Phoenix, Arizona
University
Sarah R. Brand, PhD Doernbecher Children’s
Instructor of Psychology Hospital
Harvard Medical School Portland, Oregon
Staff Psychologist
Brian P. Daly, PhD
Department of Psychosocial
Oncology and Palliative Care Assistant Professor of
Dana Farber Cancer Institute Psychology
Boston, Massachusetts Drexel University
Philadelphia, Pennsylvania
Joanna Breyer, PhD
Mary Lynn Dell, MD, DMin
Assistant Professor of Psychiatry
Harvard Medical School Department of Psychiatry
Pediatric Psychosocial Unit Nationwide Children’s
Dana-Farber Cancer Institute Hospital
Boston, Massachusetts Columbus, Ohio
Contributors Jeffrey S. Dome, MD, PhD Martha A. Grootenhuis, PhD
Professor of Pediatrics Pediatric Psychosocial Department
George Washington University Emma Children’s Hospital
School of Medicine and Health Academic Medical Center
Sciences University of Amsterdam
Thomas Willson and Lenore Amsterdam, the Netherlands
Williams McKnew Professor of
Pediatric Oncology Daniel H. Grossoehme,
Chief, Divisions of Hematology DMin, MS
and Oncology Chaplain
Children’s National Medical Division of Pulmonary Medicine
Center Assistant Professor of Pediatrics
Washington, D.C. University of Cincinnati
Cincinnati, Ohio
Dennis Drotar, PhD
Professor of Pediatrics Kristina K. Hardy, PhD
University of Cincinnati Neuropsychology Division
Clinical Psychologist, Behavioral Children’s National Medical
Medicine and Clinical Psychology Center
Cincinnati Children’s Hospital The George Washington
Cincinnati, Ohio University School of Medicine
Washington, D.C.
xviii
Contributors
Emeritus Professor of Pediatrics Psychiatrist
Medical College of Wisconsin Department of Psychiatry and
Milwaukee, Wisconsin Behavioral Sciences
Memorial Sloan-Kettering Cancer
Ernest R. Katz, PhD
.
Center
Adjunct Professor of Clinical New York, New York
Pediatrics and Psychology
Keck School of Medicine and the Jennifer M. Levine, MD, MSW
Dornsife College Assistant Professor of Pediatrics
University of Southern California Columbia University Medical
University Center of Excellence in Center
Developmental Disabilities New York, New York
Children’s Hospital of Los Angeles
Founder, School Transition and Avi Madan-Swain, PhD
Re-Entry Service Associate Professor of Pediatrics
Children’s Center for Cancer and University of Alabama at
Blood Diseases Birmingham
Los Angeles, California Children’s Hospital of Alabama
Birmingham, Alabama
Anne E. Kazak, PhD, ABPP
Center for Healthcare Delivery David Malkin, MD
xix
Science Professor of Pediatrics and Medical
Nemours Pediatric Health System Biophysics
Wilmington, Delaware University of Toronto
Professor The Hospital for Sick Children
Department of Pediatrics Toronto, Ontario
Sidney Kimmel Medical School of
D. Richard Martini, MD
Thomas Jefferson University
Philadelphia, Pennsylvania Division Chief of Behavioral
Health
Julia A. Kearney, MD Department of Pediatrics
Child Psychiatrist and University of Utah School of
Pediatrician Medicine
Department of Psychiatry and Director of Psychiatry and
Behavioral Sciences Behavioral Health
Memorial Sloan-Kettering Cancer Primary Children’s Medical
Center Center
New York, New York Salt Lake City, Utah
Contributors
RN, CPNP Pediatric Oncology Branch
Assistant Professor of Nursing Center for Cancer Research
Duke University School of National Cancer Institute
Nursing National Institutes of Health
Durham, North Carolina Bethesda, Maryland
xxi
Center Barbara Sourkes, PhD
Rochester, New York Professor of Pediatrics
Stanford University Medical
Lisa A. Schwartz, PhD Center
Psychologist Lucile Salter Packard Children’s
University of Pennsylvania School Hospital
of Medicine Stanford, California
The Children’s Hospital of
Philadelphia Rachel A. Tunick, PhD
Philadelphia, Pennsylvania Instructor of Psychology
Harvard Medical School Staff
Jaclyn Schienda, ScM, CGC
Psychologist
Genetic Counselor Department of Psychiatry and
Center for Cancer Genetics and Children’s Hospital Primary
Prevention Care Center
Dana-Farber Cancer Institute Boston Children’s Hospital
Boston, Massachusetts Boston, Massachusetts
Aziza Shad, MD Katherine E. Warren, MD
Amey Distinguished Professor of National Cancer Institute
Neuro-Oncology and Childhood Pediatric Oncology Branch
Cancer Bethesda, Maryland
Georgetown University
Lombardi Comprehensive Cancer
Center
Georgetown University Hospital
Washington, D.C.
Contributors Alan S. Wayne, MD Matthew Wright, MD
Professor of Pediatrics Chief of Hospital Medicine
Keck School of Medicine Western Regional Medical Center
University of Southern Goodyear, Arizona
California
Lonnie Zeltzer, MD
Director
Children’s Center for Cancer and Professor of Pediatrics,
Blood Diseases Anesthesiology, and Psychiatry and
Head, Division of Hematology, Biobehavioral Sciences
Oncology and Blood & Marrow David Geffen School of Medicine
Transplantation University of California
Children’s Hospital Los Angeles Los Angeles, California
Los Angeles, California UCLA Mattel Children’s Hospital
UCLA Jonsson Comprehensive
Lori Wiener, PhD, DCSW Cancer Center
Co-Director Los Angeles, California
Behavioral Science Core
Director
Psychosocial Support and Research
Program
Pediatric Oncology Branch,
Center for Cancer Research
xxii
It is a pleasure to write the Purpose and Overview for the second edi-
tion of the Pediatric Oncology Handbook relating to the psychiatric and psy-
chosocial care of the child with cancer. The first edition was published in
2009 by the American Psychosocial Oncology Society. This second edition
is being published by the Oxford University Press as part of its series of
handbooks for psychiatric and psychosocial care of the adult, child, and
elder with cancer. Because these handbooks depend strongly on tables and
rapid learning formats, they are ideal not only for the busy clinic staff but
also for teaching students, residents, and fellows in pediatric oncology and
its subspecialties. Every child at every visit presents psychological and social
issues that, if handled well, result in enhanced trust, reduced distress, and
greater adherence to treatment. If handled poorly, the converse too often
results in greater distress, distance from the staff, and poorer adherence.
The consequences are too great to be neglected as we progress to truly
xxiii
xxiii
patient-centered care.
The psychological care of children with cancer has for far too long lacked
both standards of quality and clinical practice guidelines to assure that
pediatric staff take care of the whole child with the optimal tools available.
This volume goes a long way to assuring that this goal is reached. The edi-
tors are five outstanding clinical investigators in pediatric psycho-oncology.
They have chosen authors to write on specific critical areas of clinical care:
how to talk to parents and children; psychological and social problems by
site of cancer; management of common psychological and physical symp-
toms; psychotherapeutic approaches; cognition problems, their impact
and treatment; school issues; spiritual and religious issues. Taken together,
these chapters contribute greatly to the development of the first practice
guidelines for psychosocial care of children with cancer. This is a goal that
we can all celebrate as a benchmark of progress.
Jimmie C. Holland, MD Wayne E. Chapman
Chair in Psychiatric Oncology Department of Psychiatry and
Behavioral Sciences
Memorial Sloan-Kettering Cancer Center, New York,
New York
February, 204
Section I
Cancers of Childhood
Chapter
3
that can have life-long impact. Accordingly, children and adolescents with
leukemia and lymphoma should receive systematic and serial neurocogni-
tive and psychosocial assessments during and after treatment as part of
comprehensive multidisciplinary care. This chapter will focus specifically on
these particular issues.
Chapter
Orbital infiltration
Osteopenia, Corticosteroids (cumulative dose) Bone mineral
Osteonecrosis Stem cell transplantation density
Caucasians Imaging studies
Adolescents
Secondary Alkylators (e.g., cyclophosphamide) Complete blood
malignancy (cumulative dose) count
Epipodophyllotoxins (e.g., Imaging studies
etoposide)
Stem cell transplantation
5
Radiation
60 Hodgkin
50
40
30
20
10
0
0 5 10 15 20
Age (years)
therapy is required for all individuals with those diagnoses. Allogeneic stem
cell transplantation (SCT) is commonly utilized for individuals with the high-
est risk features (e.g., relapse). Radiation therapy (XRT) is infrequently
employed in pediatric hematologic malignancies. Its use is reserved for local
control of active disease involving the CNS or testes, certain cases of lym-
phoma, and for pretransplant conditioning (total body irradiation).
Chapter
Effect Intervention
Neurocognitive dysfunction Educational approaches (e.g., individualized
education plans, accommodations, special
• IQ
services, assistive technologies, targeted
• Memory learning and “re-training” approaches,
• Executive functions selective environment)
Compensatory techniques (e.g.,
• Problem solving organizational tools, environmental
• Organizational skills supports, occupational therapy)
• Visual perceptual and motor Vocational training
function
7
• Information processing
Neuropsychological dysfunction Mental health specialist, neuropsychologist
• Attention, concentration Behavioral therapy
Risky behaviors Behavioral therapy
Adjustment (school, work, Support groups
relationships) Social work and/or school counselor
support
• Social isolation
Psychosocial service consultation for
• Adherence psychotherapy, cognitive behavioral therapy
Pharmacologic approaches
Psychiatric manifestations Mental health specialist
• Anxiety Individual and group therapy
Pharmacologic approaches
• Depression
• Post-traumatic stress
School absenteeism Homebound schooling
School re-entry program
Financial concerns Social work assessment
• Healthcare expenses Referral to local and national resources
• Unemployment
• Parental loss of work
• Lack of insurance
Healthcare concerns Coordinated oncologic care followed by
cancer survivorship care
• Complex multidisciplinary care
needs Social work support
• Inadequate insurance
Cancers of Childhood The diagnosis and treatment of leukemias and lymphomas not only
impacts the affected child, but also parents, siblings, extended family mem-
bers, and their communities.2 (See Chapter 24, Impact of Cancer on Family
and Siblings.) In addition to the direct psychological effects that the diagno-
sis of cancer confers, there are substantial psychosocial consequences of
the demands of treatment and associated toxicities (Tables . and .3).3
Specific to ALL therapy, for instance, the use of steroids may lead to a
Cushingoid appearance with altered body image, in addition to a sequale
of medical complications including but not limited to the development of
Section I
good time for children to re-enter the school system and return to their
usual routine.
Adolescents and young adults (AYA) are at particularly high risk for
adverse consequences, for both medical and psychosocial issues.4 The
AYA population generally has worse outcomes, and may be at higher risk
of relapse.5 A specific emphasis on medication adherence, which may be
especially challenging during the long periods of ALL maintenance therapy
and also posttransplant, is an important consideration for which innovative
strategies of monitoring may be indicated.6 (See Chapter 6, Psychosocial
Issues for Transplant Patients and Donors, and Chapter 7, Medication
Adherence.) After completion of therapy, the AYA population often has
significant barriers to obtaining healthcare during survivorship follow-up
and monitoring. Specific attention to obtaining resources and medical
insurance is needed to optimize their long-term care and overall quality of
health. (See Chapter 33, Pediatric Cancer Survivors.)
Summary
Although leukemias and lymphomas are highly curable in pediatrics, diag-
nosis and treatment confer significant physical, psychological, and social
risks that can have life-long impact.
• C
hildren and adolescents with leukemia and lymphoma should receive
systematic and serial neurocognitive and psychosocial assessments
during and after treatment as part of comprehensive multidisciplinary
care.
• L ong-term follow-up is essential to monitor for possible relapse,
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adolescents surviving cancer. J Pediatr Psychol. 2005;30():65–78.
9. Nathan PC, Patel SK, Dilley K, et al. Guidelines for identification of, advocacy
for, and intervention in neurocognitive problems in survivors of childhood
cancer: a report from the Children’s Oncology Group. Arch Pediatr Adolesc
Med. 2007;6(8):798–806.
0. Duffner PK, Armstrong FD, Chen L, et al. Neurocognitive and neuroradiologic
central nervous system late effects in children treated on pediatric oncology
group (POG) P9605 (standard risk) and P920 (lesser risk) acute lymphoblas-
tic leukemia protocols (ACCL03): a methotrexate consequence? A report
from the children’s oncology group. J Pediatr Hematol Oncol. 204;36():8–5.
. Krull KR, Brinkman TM, Li C, et al. Neurocognitive outcomes decades after
treatment for childhood acute lymphoblastic leukemia: a report from the st
jude lifetime cohort study. J Clin Oncol. 203;3(35):4407–445.
2. Buchbinder D, Casillas J, Krull KR, et al. Psychological outcomes of siblings
of cancer survivors: a report from the Childhood Cancer Survivor Study.
Psychooncology 20;20(2):259–268.
3. Zebrack BJ, Zeltzer LK, Whitton J, et al. Psychological outcomes in
long-term survivors of childhood leukemia, Hodgkin’s disease, and
Cancers of Childhood non-Hodgkin’s lymphoma: a report from the childhood cancer survivor
study. Pediatr. 2002;0( Pt ):42–52.
4. Zebrack B, Isaacson S. Psychosocial care of adolescent and young adult
patients with cancer and survivors. J Clin Oncol. 202;30():22–226.
5. Keegan TH, Tao L, Derouen MC, et al. Medical care in adolescents and
young adult cancer survivors: what are the biggest access-related barriers?
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Section I
Neuroblastoma
Giselle Saulnier Sholler
11
11
Children diagnosed at less than one year of age usually have early stage
disease with good outcome (survival may exceed 80–90%) and require
minimal therapy. Children diagnosed after 2–8 months of age often have
disease that has spread and require extensive therapy with lower chance
of survival. 3,4
Therapy
Large studies have shown that patients treated on clinical trials tend to
have better survival. Most children will be eligible for such trials. These
clinical trials (often called “protocols”), which include standard thera-
pies as well as a novel component, are designed to improve survival.
Sometimes protocols involve a randomization between standard therapy
and standard therapy plus experimental therapies. During the proto-
col consent discussion between physicians and family, the parents will
require time and professional help in order to understand the therapies
and side effects (Tables 2.2 and 2.3). Parents should be informed that, if
they decline to consent, they will be given the best known therapy with
full medical staff support. Treatment of side effects is also an important
component of treatment (Table 2.4). In some instances, in disorders with
a particularly poor prognosis, discussions of palliative care are initiated at
the time of diagnosis.
Cancers of Childhood
Table 2. Specific Neuroblastoma Syndromes
Perinatal neuroblastoma • Neuroblastoma may be detected as
a suprarenal mass by fetal ultrasound
before birth, or in the newborn.
• Current practice is to inform parents
that most of these infants do not
need treatment and to observe with
repeated radiological scans.
Stage IVS • Infants have small primary adrenal
tumors but with liver infiltration and/or
Section I
Chapter 2
been found • High-risk neuroblastoma is a rapidly arising tumor in children
earlier? greater than one year at diagnosis. It is often not present long
before diagnosis.
What will the • Diagnostic testing by several different radiologic procedures
diagnostic are required. These often require sedation so the child will
testing be like be able to remain still. The child may be hungry and irritable
for my child? beforehand and when he or she wakes up. Biopsy of the
tumor and bone marrow will be done under sedation and
may require pain medication afterwards.
Will my child • The child may require a central venous line placement for
need surgery? chemotherapy.
• Surgery to remove all or part of a tumor may be needed. The
child’s pain will be treated hour by hour with medicine and he
or she will be up and about usually in –3 days depending on
the extent of surgery.
Will I be able • The impact of intensive treatments should be discussed with
13
to continue parents, particularly with regard to support available to the
working? family and employment options.
• One parent may be required to take time away from work to
be with the child throughout treatment.
• Offer to call, write letters to employers, and assist with
family medical leave forms.
• Assist with communication with the child’s school. It may be
possible for the child to keep up with schoolwork in hospital
if hospital educators are present.
What about • Suggest the parent(s) ask family and friends for help, shared
my other parenting if possible (weekdays, weekends, week nights).
child(ren)? • Encourage the involvement, understanding, and frequent
presence of siblings.
• Refer siblings to sibling support programs within the hospital
if available or within the community.
Will my child • At diagnosis, the therapy given is expected to cure the child.
die? • Support with encouragement that survival is the goal and
therapies continually improve.
• It is important to remain aware that some tumors will be
resistant to therapy and not all children will survive; this will
only be known months to years after the initial diagnosis.
Cancers of Childhood
Table 2.3 Concerns Surrounding Initiation of Treatment
Concern Parent Education and Management Suggestions
Will the • Provide information that many children play and have no
chemotherapy side effects as the drugs infuse.
cause immediate • Supportive medicines are given to prevent nausea before it
sickness, occurs and can be adjusted for each child as needed.
vomiting and/or
• Nausea or pain may develop over days, but will be treated
pain?
to minimize or omit their symptoms.
What will happen • Children will not be discharged until it is considered
Section I
Chapter 2
• Numbness, tingling, or mild weakness in the
hands or feet is possible and usually resolves
over time.
• Pain is reversible and will subside over several
days to a week if Vincristine is decreased or
omitted.
• Inform parents that Tylenol should not be
given unless they have spoken with the child’s
physician and only after a temperature check,
since it may mask the presence of fever and
infection.
• Opiates may be prescribed if pain is
significant.
Platinum: • Hearing loss can increase over time with
Hearing Loss recurrent exposures of this drug.
• Patients will be monitored with hearing tests
15
to prevent significant loss, but some children
will need hearing aids.
Retinoic Acid • Side effects such as dry, chapped lips can be
treated topically.
• The child may prefer to rest in bed most of the day, but
blood cells many patients feel better in the third week.
• Gently inform parents that fatalities are rare but may
occur.
Distress with • Shared parent-family “shifts” may help to give
isolation in specially caregivers a break.
filtered room, • A planned daily schedule (washing up, mouth care, out-
boredom, inability of-bed-to-chair, TV time, book time, craft time, etc.) is
to have visitors, helpful.
exhaustion
• Daily phone calls or e-mails to and from family and
friends are helpful.
• Creating a free, personalized webpage through
programs such as Care Pages or Caring Bridge can help
families keep others abreast of their child’s progress.
16
Neuroblastoma
. American Cancer Society. Cancer Facts and Figures. Atlanta, GA: Author;
2008.
2. Bernstein ML, et al., A population-based study of neuroblastoma inci-
dence, survival, and mortality in North America. J Clin Oncol. 992:
0(2):323–329.
3. Brodeur GM, et al., Revisions of the international criteria for neuroblas-
Chapter 2
toma diagnosis, staging, and response to treatment. J Clin Oncol. 993:
(8):466–477.
4. Park JR, Eggert A, Caron H. Neuroblastoma: biology, prognosis, and treat-
ment. Pediatr Clin North Am. 2008;55():97–20.
17
Chapter 3
Wilms Tumor
Jeffrey S. Dome
19
19
challenges at diagnosis, during treatment, and after completion of therapy
(Table 3.). The total care of a patient involves a multidisciplinary approach
that includes family support measures to optimize the quality of life.
disease
• Guilt associated with not
• Surgery to remove the making the diagnosis sooner
tumor or biopsy to
• Guilt about what caused the
establish the diagnosis
tumor and whether it could
• Placement of central have been prevented
catheter to administer
• Questions about risks to
chemotherapy
other family members
On Treatment • Favorable Wilms For both favorable and
tumor: 9–3 weeks of anaplastic Wilms tumor
outpatient chemotherapy; Child:
radiation therapy for stage
• Disruption to the patient’s
III/IV disease
schooling and activities
• Anaplastic Wilms
• Hair loss and other changes
tumor: 25–36 weeks of
in appearance, affecting
inpatient and outpatient
the patient’s image and
chemotherapy; radiation
self-esteem
therapy for all patients
Parents:
• Disruption to the parents’
jobs and the normal family
routine
• Financial concerns from
costly treatment and
absence from work
Completion of • Radiology studies and • Acclimation back to normal
Therapy physical exam at the end routine
of therapy and every • Anxiety about tumor
3–6 months for 4 years recurrence
• Monitoring for late effects • Anxiety about long-term
of treatment effects of therapy
Other documents randomly have
different content
Hän oli näillä sanoilla esittänyt heille asian niin selvästi, ettei
tarvinnut kauvan sitä miettiä. Komankhit olivat ääneti, paitsi heidän
johtajansa, joka lyhyeltä neuvotteli kuuden valkoihoisen kanssa ja
lausui sitten apakhille:
*****
"Tämä ei enään käy päinsä", lausui hän tälle. "Me ihmiset emme
toissa päivästä asti ole saaneet tippaakaan vettä, kun meidän täytyi
säästää viime jäännöksen eläimillemme. Ja tämäkin loppui jo tänä
aamuna, kun molemmat viimeiset astiat selittämättömällä tavalla
olivat tyhjiin juosseet."
"Ei, sitä emme uskalla. Jos pysähdymme, emme enään saa niitä
liikkeelle. Jos ne panevat maata, niin ne varmaan eivät enää koskaan
nouse. Meidän täytyy pakoittaa niitä eteenpäin, kunnes joudumme
mainitsemallenne kaktusvainiolle."
Hän puhui totta, sillä tuon aiotun hyökkäyksen piti tapahtua ennen
tätä aikaa. Että nuo mainitut ratsastajat olivat hänen liittolaisensa,
jotka olivat muuttaneet viitat väärälle suunnalle, sitä hän tietysti ei
maininnut. Hän hymyili itsekseen, kun nuo kaksimieliset sanat
näyttivät toista rauhoittavan.
Vasta sitten kun hän oli tullut heitä jotenkin lähelle, herättivät
ratsastajien sekä luku että heidän käytöksensä hänen ihmettelynsä.
He olivat nyt myös hänet huomanneet. Mutta sen siaan, että olisivat
rauhallisesti hänen tuloaan odottaneet, jakaantuivat he kolmeen
osaan. Yksi osa jäi paikalleen; molemmat muut ratsastivat oikealle ja
vasemmalle Veri-Repoa vastaan; ikäänkuin tahtoisivat hänet piirittää
ja katkaista häneltä paluumatkan.
"Ne ovat hukassa ja vesi samoin!" valitti Repo. "Mutta minä kostan
heti." Hän viihdytti hevosensa ja sai sen pysähtymään. Hän tarttui
kaksipiippuseen pyssyynsä, tähtäsi, sitten kuului laukaus, vielä
toinenkin ja molemmat etumaiset vainoojat putosivat hevosiltaan.
"Nyt taas eteenpäin! Eiväthän taas aivan heti tule niskaani. Nyt en
voi muuta tehdä, kuin hakea Vanhaa Kovakouraa ja johtaa hänet
siirtolaisraukkojen jäljille."
"Miksi et?"
"Mikä onni, että teidät tapasin! Minun täytyy pyytää teiltä pikaista
apua."
"Missä ne ovat?"
"Sitä en tunne."
Nyt kiiti tuo pieni joukko tuulen nopeudella aavikon yli. Veri-Repo
ratsasti Vanhan Kovakouran rinnalla ja kertoi hänelle tavanneensa
"kotkat" ja menettäneensä neljä hevosta. Metsästäjä katsoi häneen
tutkivasti, ja sanoi, merkitseväisesti hymyillen:
"Kuka?"
"Vai järven rannalla! No, tuo vanha taru on siis totta puhunut.
Kertoisitteko minulle tuosta paikasta?"
Juuri kun päivä meni mailleen, tultiin vaunujen jäljille, joita nyt
seurattiin suoraan etelään. Tämä ei ollut vaikeata, sillä kuu nousi
pian ja levitti valoaan yli seudun. Kun oli noin tunnin ajan
ratsastettu, pysäytti Vanha Kovakoura äkkiä hevosensa, osoitti
suoraan eteensä ja lausui:
"Luulen!"
"Kuule! Ihmisiä tulee! Herra Jumala, jos toisivat apua! Tahi ovatko
ryöväreitä?"
Mutta Taivola oli jo poissa. Hän ymmärsi, ettei hänen nyt pitäisi
viipyä silmänräpäystäkään kauvemmin. Sentähden hän hiipi toiselle
puolelle, veti äkkiä pari vaunua syrjään, päästäkseen neliöstä ulos,
heittäysi satulaan ja ryntäsi pois.
"Täytyy kai veljeni Kovakourankin olla täällä. Eikö hän ole ääntäni
kuullut?"
"Olen kyllä, tässä olen!" huudahti tämä, joka muutamien avulla oli
äkkiä lykännyt kaksi vaunua sivulle ja nyt astui esille, sulkemaan
punaisen ystävänsä syliinsä. Häntä seurasivat Paavo, Pekka,
Silmänkääntäjä-Reitto, Jimi ja Timi, toiset tervehtiäkseen ystäviään,
toiset saadakseen mahdollisen pian nähdä Vinnetuun. Siinä syntyi
nyt vilkas elämä, sydämmellisiä kätten puristuksia, kysymyksiä ja
vastauksia, vaikka ilman melutta, niinkuin tila vaati.
Näin oli siis tuo arvoitus ratkaistu, josta he niin usein olivat
keskustelleet. Muutkin tuijottivat siihen, mutta he eivät puhuneet
mitään. Veri-Repo nousi taas hevosensa selkään ja ratsasti toisten
kanssa pois keitaalta, kaktusmetsän kaakkoiskulmaan, jonne hän
asettui. Hän tähysteli pohjoiseen.
Niin, "kotkat" tulivatkin, mutta heitä oli nyt vaan kolme. Toiset oli
tapettu. Heidän hevosensa olivat vaahdossa; itse he vaan vaivoin
pysyivät satulassa. Vähän matkan päässä heidän takanaan näkyivät
Vanha Kovakoura ynnä Vinnetuu ja heitä seurasivat kaikki muut.
Näin lähestyi tuo hurja metsästys. Johtajat eivät hevosiaan
rasittaneet. He tahtoivat säästää kolme viimeistä "kotkaa" Veri-
Revolle ja hänen komankhilleen.
Sanna piti tuon vanhan kuvan Veijon edessä. Hän katsahti siihen
ja hyppäsi ilosta huutaen hevoselta alas. He syleilivät toisiaan,
eivätkä voineet pitkään aikaan ilmoittaa iloansa muuten kuin
tolkuttomilla äänillä.
Updated editions will replace the previous one—the old editions will
be renamed.
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