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9780596500092

Childhood Brain and Spinal Cord Tumors : A Guide for Families, Friends and Caregivers

by ; ;
  • ISBN13:

    9780596500092

  • ISBN10:

    0596500092

  • Edition: 1st
  • Format: Paperback
  • Copyright: 2001-12-01
  • Publisher: Independent Pub Group
  • Purchase Benefits
List Price: $29.95

Summary

Childhood Brain & Spinal Cord Tumors, the most complete parent guide available, includes detailed and precise medical information about both benign and malignant brain spinal and spinal cord tumors that strike children and adolescents. In addition, it offers day-to-day practical advice on how to cope with procedures, hospitalisation, family and friends, school, social and financial issues, communication, feelings, and, if therapy is not successful, the difficult issues of death and bereavement. 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.

Author Biography

Maria Sansalone has a Bachelor's in English from American International College, and an Associate's in Science degree. She has worked in the past in hospital settings in the area of health information management, and for the last ten years as a Cross Reference editor for Merriam-Webster, Inc., the dictionary and reference publishers. Her position allows her access to information from almost every field. But, nothing, she says, prepared her for her son's diagnosis of an optic glioma. "It was a completely shocking and shattering experience, and it's taken many years to find a balance. Listening to families relate their own experiences for this book was immensely influential. I think it helped to bring things back full circle."

Patsy Cullen received her BSN in nursing from the University of California, her MS from the University of Kansas, and her pediatric nurse practitioner training from the University of Colorado. She has worked as a pediatric nurse practitioner in Pediatric Oncology for more than 20 years and is currently a member of the staff of Childhood Hematology-Oncology Associates and the Rocky Mountain Children's Cancer Center in Denver, Colorado. She has published extensively in the areas of general pediatric oncology, radiation oncology and neuro-oncology. She has been a member of the Children's Cancer Group for twenty years, has served on the Nursing Discipline committee as Vice-Chair and now chairs the clinical trials subcommittee. Additionally, Patsy is now a Principal Investigator in the Children's Oncology Group, administratively heading the program at Presbyterian-St. Luke's Medical Center and was recently elected to serve on the group's Nominating Committee. She has held nursing appointments on many national pediatric CNS tumor trials and is currently on the CNS Tumor Steering Committee for the Children's Oncology Group.

Tania Shiminski-Maher received her BSN and MS in pediatric primary care from Columbia University. She is a certified as a pediatric nurse practitioner, clinical neuroscience registered nurse, and pediatric oncology nurse. She has worked as a pediatric nurse practitioner in pediatric neurosurgery and pediatric neuro-oncology for the past fifteen years. She has published extensively in the area of pediatric brain tumors, hydrocephalus and multidisciplinary team communication. She has been a member of the nursing committee of the Children's Cancer Group for the past fifteen years and a member of the nursing steering committee for ten years. She holds academic appointments to the faculty of New York University School of Nursing and Hunter-Bellevue School of Nursing.

Table of Contents

Foreword ix
Preface xi
Diagnosis
1(14)
Signs and symptoms
1(3)
Where should your child receive treatment?
4(1)
Physical responses
5(1)
Emotional responses
5(7)
The immediate future
12(3)
The Brain and Spinal Cord
15(18)
The brain
15(11)
Ventricular system
26(2)
Increased intracranial pressure
28(1)
Spinal cord
29(1)
From the CNS to the body
29(4)
Types of Tumors
33(15)
Who gets central nervous system tumors?
33(1)
Types of CNS tumors
34(7)
Treatment
41(7)
Coping with Procedures
48(34)
Planning for procedures
48(3)
Pain management
51(5)
Procedures
56(26)
Your Child's Hospitalization
82(13)
The room
82(2)
Food
84(1)
Parking
85(1)
The endless waiting
86(1)
Befriending the staff
87(1)
Being an advocate for your child
88(3)
Where do the kids play?
91(4)
Family and Friends
95(25)
The extended family
95(5)
Friends
100(12)
Restructuring family life
112(8)
Forming a Partnership with the Medical Team
120(21)
The hospital
121(4)
Finding a surgeon and neuro-oncologist
125(2)
Choosing a hospital
127(1)
Types of relationships
128(1)
Communication
129(5)
Getting a second opinion
134(2)
Conflict resolution
136(2)
Changing doctors
138(3)
Surgery
141(20)
The neurosurgeon
141(1)
Types of surgery
142(8)
Presurgical evaluation
150(3)
Anesthesia
153(1)
The surgery
154(1)
Postoperative complications
155(4)
Discharge
159(2)
Clinical Trials
161(12)
Why are children enrolled in clinical trials?
161(1)
What is standard treatment?
161(1)
What types of clinical trials are there?
162(1)
What is randomization?
162(1)
What about experimental drugs?
163(1)
Who designs clinical trials?
164(1)
Who supervises clinical trials?
164(1)
What questions should parents ask about clinical trials?
165(1)
What is informed consent?
166(2)
What is a protocol?
168(1)
Should parents receive the entire trial document?
169(1)
What happens if parents say no?
170(1)
Can parents remove their child?
170(1)
Pros and cons of clinical trials
171(2)
Venous Catheters
173(18)
External catheter
173(6)
Subcutaneous port
179(4)
Peripherally inserted central catheters
183(3)
A word about adhesives
186(1)
What about cost?
187(1)
Choosing not to use a catheter
188(1)
The decision: which catheter for your child?
189(2)
Radiation Therapy
191(22)
Types of radiation therapy
191(4)
Who needs radiation treatment?
195(1)
When is radiation treatment given?
196(1)
Questions to ask about radiation treatment
196(1)
Where should your child go for radiation treatment?
197(1)
Radiation oncologist
197(1)
Radiation therapist
198(1)
Immobilization devices
198(2)
Sedation
200(2)
What is a radiation treatment like?
202(3)
Possible short-term side effects
205(2)
Possible long-term side effects
207(6)
Chemotherapy
213(44)
How chemotherapy drugs kill tumor cells
213(1)
How chemotherapy drugs are given
214(1)
Dosages
215(1)
Chemotherapy drugs and their possible side effects
215(28)
Colony-stimulating factors
243(1)
Antinausea drugs used during chemotherapy
244(4)
Drugs used to relieve pain
248(5)
Adjunctive treatments
253(1)
Alternative treatments
253(4)
Common Side Effects of Chemotherapy
257(26)
Hair loss
257(3)
Nausea and vomiting
260(3)
Low blood counts
263(7)
Diarrhea
270(2)
Constipation
272(1)
Fatigue and weakness
273(2)
Bed wetting
275(1)
Dental problems
276(1)
Mouth and throat sores
277(2)
Changes in taste and smell
279(1)
Skin and nail problems
279(1)
Eating problems
280(1)
Steroid problems
281(1)
Seizures
281(2)
Bone Marrow and Stem Cell Transplantation
283(18)
When are transplants necessary?
283(1)
Types of transplants
284(4)
Choosing a transplant center
288(2)
Paying for the transplant
290(1)
The transplant
291(2)
Emotional responses
293(6)
Long-term side effects
299(2)
Feelings, Communication, and Behavior
301(25)
Telling your child
301(3)
Feelings
304(2)
Communication
306(2)
Common behavioral changes of children
308(6)
Common behavioral changes of parents
314(6)
Improving communication and discipline
320(4)
Checklist for parenting stressed children
324(2)
Siblings
326(16)
Telling the sibling
326(1)
Emotional and behavioral responses of the siblings
327(6)
Sibling experiences
333(4)
Helping siblings cope
337(3)
Positive outcomes for the siblings
340(2)
Nutrition
342(18)
Treatment side effects and eating
342(3)
What is a balanced diet?
345(2)
Vitamin supplements
347(1)
Making eating fun
348(5)
What kids really eat
353(1)
Parent advice
354(2)
Commercial nutritional supplements
356(1)
Feeding by tube and IV
357(3)
Record Keeping and Finances
360(18)
Keeping medical records
360(4)
Keeping financial records
364(5)
Coping with insurance
369(5)
Sources of financial assistance
374(4)
Sources of Support
378(16)
Hospital social workers
378(1)
Support groups for parents
379(4)
Support groups for children
383(1)
Support groups for siblings
384(1)
Parent-to-parent programs
384(1)
Hospital resource rooms
385(1)
Brain tumor conferences
386(1)
Clergy and religious community
386(2)
Individual and family counseling
388(4)
Camps
392(2)
School
394(33)
Keeping the school informed
395(1)
Keeping teacher and classmates involved
396(1)
Keeping involved with school work
396(1)
Siblings need help, too
397(1)
Returning to school
398(3)
Avoiding communicable diseases
401(1)
What about preschoolers?
402(1)
Rehabilitation
403(6)
Identifying cognitive problems
409(14)
The terminally ill child and school
423(1)
Record keeping
424(1)
On accepting disabilities
425(2)
End of Treatment
427(18)
Emotional issues
427(2)
Last day of treatment
429(1)
Catheter removal
430(1)
Ceremonies
431(1)
What is normal?
432(2)
Follow-up care
434(5)
Keeping the doctor informed
439(2)
Employment
441(1)
Insurance for survivors
442(3)
Relapse
445(9)
Signs and symptoms
445(2)
Emotional responses
447(1)
Deciding on a treatment plan
448(6)
Death and Bereavement
454(24)
Transitioning from active treatment
454(5)
Supportive care
459(2)
Dying in the hospital
461(1)
Dying at home
462(2)
The funeral
464(2)
The role of family and friends
466(6)
Sibling grief
472(2)
Parental grief
474(4)
Toward the Future
478(5)
A. Blood Counts and What They Mean 483(7)
B. Resources 490(14)
C. Books and Online Sites 504(12)
D. List of Pediatric Neurosurgeons 516(7)
Index 523

Supplemental Materials

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