Childhood Leukemia: A Guide for Families, Friends & Caregivers, 2nd Edition

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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 ...

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Overview

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.

Obtaining a basic understanding of topics such as medical terminology, how drugs work, common side effects of chemotherapy, and how to work more effectively with medical personnel can only improve the quality of life for the whole family suffering along with their leukemic child. Having parents describe their own emotional ups and downs, how they coped, and how they molded their family life around hospitalizations can be a tremendous comfort. Just knowing that there are other kids on chemotherapy who refuse to eat anything but tacos or who have frequent rages can make one feel less alone.

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. This second edition contains significant updates to the information on treatments, chemotherapy drugs, bone marrow transplants, coping with side effects, and resources. It also contains a personal treatment summary and long-term follow-up guide for your child to keep as a permanent record.

"...includes updates on treatments, ways to deal with side effects, and drugs...stories from cancer survivors and their parents accompany practical information...patients can record their treatments in the book's record keeper."

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Product Details

  • ISBN-13: 9781565926325
  • Publisher: Childhood Cancer Guides
  • Publication date: 10/8/1999
  • Series: Patient Centered Guides Series
  • Edition description: Second Edition
  • Edition number: 2
  • Pages: 513
  • Product dimensions: 6.00 (w) x 8.99 (h) x 1.08 (d)

Meet the Author

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.

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Table of Contents

Foreword

Introduction

1. Diagnosis

2. Leukemia

3. Coping with Procedures

4. Clinical Trials

5. Family and Friends

6. Forming a Partnership with the Medical Team

7. Hospitalization

8. Catheters

9. Sources of Support

10. Chemotherapy

11. Common Side Effects of Chemotherapy

12. Radiation

13. Record-Keeping and Finances

14. Nutrition

15. School

16. Siblings

17. Feelings, Communication, and Behavior

18. End of Treatment and Beyond

19. Relapse

20. Bone Marrow and Stem Cell Transplantation

21. Death and Bereavement

A. Photographs of Our Children

B. Blood Counts and What They Mean

C. Resource Organizations

D. Books and Online Sites

Glossary



Index

A[ Top ]
abducens nerve, 153
abnormal head growth, 21-23
acquired hydrocephalus, 10-13
admissions, hospital, 114-116
adult onset hydrocephalus, 37-39
Alzheimer's disease, 33
AMA Directory of Physicians in the United States, 64-65
American Association of Neurological Surgeons AANS, 67
American Association for Marriage and Family Therapy, The AAMFT,
188
American Board of Pediatric Neurological Surgery ABPNS, 62
American Medical Association AMA, 67
Americans with Disabilities Act ADA, 272-273
anesthesia, 94-96
      questionnaire, 95-96
      questions to ask before, 96
antiseizure medication, 160-165
      common side effects of, 160-161
      Depakene; Depakote Valproic acid, 162
      Diamox Acetazolamide, 162
      Dilantin Phenytoin sodium, 163
      Klonopin Clonazepam, 163
      Lamictal Lamotrigine, 163
      Mysoline Primidone, 163-164
      Neurontin Gabapentin, 164
      Phenobarbital Luminal, Solfoton, 164
      questions to ask about, 160
      Tegretol Carbamazepine; Atretol, Epitol,
Tegretol-XR, 164-165
      Valium Diazepam, 165
      Zarontin Ethosuximide, 166
aqueduct of Sylvius, 2
aqueductal stenosis, 2
arachnoid, 5
Arnold-Chiari malformation ACM, 17
Association for Spina Bifida and Hydrocephalus ASBAH, 184
attention deficit disorder ADD, 201-204
      characteristics of, 201-203
      intervention for, 203-204
attention deficit hyperactivity disorder ADHD, 201-204
      characteristics of, 201-203
      intervention for, 203-204
B[ Top ]
bacterial meningitis, 11-12
benign extra-axial fluid of infancy, 32
Beverly Referential Valve, 90-91
Biomaterials Access Assurance Act of 1997, 269-270
brain
      cerebellum, 9
      cerebral hemispheres, 6-7
      meninges, 4-6
      overview of, 3-4
      stem, 9
      ventricular system, 7-9
brain tumors, cysts, 12
Brain Tumor Society, The TBTS, 184
Broca's area, 6
burr hole operation, 136-137
C[ Top ]
catheter
      cracked, 140-141
      disconnected, 141-142
      distal, obstructions, 134-135
      lengthening procedures, 129-130
      proximal, obstructions, 133-134
Center for Attitudinal Healing CAH, 180
central sulcus, 6
cerebellum, 9
cerebral aqueduct, 2
cerebral hemispheres, 6-7
cerebrospinal fluid CSF
      defined, 1-2
      flow of, 2-3
      production, absorption of, 2
Chiari malformation CM, 17
childhood onset hydrocephalus, 35-37
children
      childhood onset hydrocephalus, example, 35-
37
      counseling for, 189-190
      hospitalization, preparing for, 109-110
      informing of diagnosis, 52-53
      neurological exam of, 26-27
      support groups for, 180-181
      surgery on, 61-63
Children's Hopes and Dreams Foundation, 181
choroid plexus, 2
      papilloma, 13
clergy, 183-184
clothing, hospitalization and, 108-109
Codman systems, 87-89
communicating hydrocephalus, 13
complications
      cracked catheters, 140-141
      disconnected catheters, 141-142
      loculated ventricles, 142
      peritoneal pseudocysts, 142-143
      signs of, 126-129
      slit ventricle syndrome SVS, 143
comprehensive system of personnel development CSPD, 213
concentration difficulties, 24
conferences on hydrocephalus, 190-191
congenital hydrocephalus, 10, 34-35
Consumer Federation of America, 241
Cordis" shunt products, 91-92
corpus callosum, 6
counseling, 186-190
      for children, 189-190
      levels of, 187-188
      locating, 188
      questions to ask when seeking, 188-189
cracked catheters, 140-141
craniosynostosis, 18-19
craniotomy, 136-137
CSF. See cerebrospinal fluid CSF
CT scans, 28-32
      advantages, disadvantages of, 31-32
      length of, 30
      preparing for, 29-30
      risks of, 30-31
      wallet-sized, 258
cysts, 12
cytomegalovirus CMV, 10
D[ Top ]
Dandy-Walker syndrome, 15-16
DeltaTM Valve, 89
Depakene Valproic acid, 162
Depakote Valproic acid, 162
Desmopressin DDAVP, 170-171
diabetes insipidus, 169-171
      symptoms, tests for, 169-170
      treatment for, 170-171
diagnosis
      adult onset hydrocephalus, example, 37-39
      child, informing of, 52-53
      childhood onset hydrocephalus, example, 35-
37
      congenital hydrocephalus, example, 34-35
      CT scans, 28-32
      MRI scans, 28-32
      neurological exam, 25-28
      radioisotope cisternography, 27-28
      second opinions for, 33
      ultrasonography ultrasound, 28
      See also misdiagnoses; responses to
diagnosis
DiamondTM valve, 92
Diamox Acetazolamide, 162
differential pressure valves, 79
Dilantin Phenytoin sodium, 163
disconnected catheters, 141-142
distal catheter, 77
      obstructions, 134-135
doctor-patient relationship, 251-255
      joint decision making and, 252
Durable Power of Attorney for Health Care, 258-260
dura mater, 5
E[ Top ]
Elekta Instruments, Inc., 91
emergencies
      Durable Power of Attorney for Health Care,
258-260
      family, friends and, 255
      MedicAlert, 255-257
      neurosurgeons and, 56
      wallet-sized CTs, MRIs, 258
employee assistance programs EAPs, 190
endoscopic third ventriculostomy, 100-101
eye, visual problems, 23-24, 152-156
      eye misalignments, 155
      how brain sees, 152-153
      impaired vision, 156
      ophthalmologists, 154-155
      perceptual defects, 156
      sunsetting, 24, 155
      symptoms of, 153-154
F[ Top ]
falx cerebri, 5-6
Family and Medical Leave Act of 1993, 267-268
fee-for-service unmanaged care insurance, 228
first aid, seizures and, 166-168
foramen, 7
foramen of Monro, 2
free appropriate public education FAPE, 212
frontal lobes, 6
G[ Top ]
gait disturbance, 23
German measles, 10
government insurance plans
      Medicaid, 231
      Medicare, 231-232
      socialized medicine and, 232-233
      Social Security Disability Insurance SSDI,
270-272
      TriCare CHAMPUS, 230-231
H[ Top ]
HakimTM Precision Valve System, 87
headaches, 23
head trauma, 13
health maintenance organization HMO, 228-229
Heyer-Shulte" shunts, 89-91
HMO referrals, 59-60
Holter, John, 76
hospital billing, 233-237
      financial record keeping and, 233-234
      managing bills, paperwork, 236-237
      problems, 234-236
      tax-deductible medical expenses, 236
hospitalization
      admissions and, 114-116
      befriending staff and, 117-119
      child-life specialists and, 113-114
      children, preparing for, 109-110
      clothing, 108-109
      common questions regarding, 105-109
      decorating room during, 106-107
      discharge decision, 105-106
      doctors and, 112-113
      food and, 119-120
      length of stay and, 105
      monitoring after surgery and, 122
      nurses and, 113
      parking and, 120
      preparing for, 103-105
      recovery and, 122-124
      shift changes during, 116-117
      touring hospital before, 110-111
      visitors during, 120-121
      what to bring for, 107
      who's who and, 111-112
hydranencephaly, 18
hydrocephalus
      Chiari malformation CM, 17
      craniosynostosis, 18-19
      Dandy-Walker syndrome, 15-16
      ex-vacuo, 37
      hydranencephaly, 18
      lifestyle choices, 249
      neural tube defects, spina bifida, 16-17
      overview of, 1
      primary causes of, 14-19
      schizencephaly, 19
      Vein of Galen malformation VGM, 17-18
      See also diagnosis
hydrocephalus, types of, 9-14
      acquired, 10-13
      bacterial meningitis, 11-12
      brain tumors, cysts, 12
      communicating hydrocephalus, 13
      congenital, 10
      head trauma, 13
      intraventricular hemorrhages IVH, 12-13
      non-communicating hydrocephalus, 13-14
      normal-pressure hydrocephalus NPH, 14
Hydrocephalus Association, 185
Hydrocephalus Foundation, Inc. HyFI, 179, 185
Hydrocephalus Support Group, Inc. HSG, 185
hypothalamus, 8
I[ Top ]
impaired vision, 156
independent practice association IPA, 230
individualized education plan IEP, 212
      developing, 213-214
      implementation of, 216-218
      what's included in, 218
Individuals with Disabilities Education Act IDEA, 210-213
      comprehensive system of personnel
development CSPD, 213
      developing IEP, 213-214
Individuals with Disabilities Education Act IDEA continued
      free appropriate public education FAPE,
212
      individualized education plan IEP, 212
      least restrictive environment LRE, 212-213
      local education agency LEA, 213
      state education agency SEA, 213
insurance
      assessing coverage, costs of, 222-223
      co-payments, 225
      deductibles, 225-227
      evaluating coverage of, 219-220
      fee-for-service unmanaged care, 228
      going outside network and, 227
      government, plans, 230-233, 270-272
      health maintenance organization HMO, 228-
229
      independent practice association IPA, 230
      lifetime cap, 227
      maintaining coverage of, 221-222
      managing bills, paperwork, 236-237
      neuropsychological testing, 148-149
      preexisting conditions and, 223-225
      preferred provider organization PPO, 229
      referrals, 59-60
      tax-deductible medical expenses, 236
      types of plans for, 227-233
insurance claims, denials, 237-244
      appeal process, 238-242, 239-242
      Consumer Federation of America, 241
      establishing contact person for, 237-238
      grievances and appeals and, 238-242
      lawyers and, 241
      Physicians Who Care advocacy group, 241
      right to appeal denials and, 238
      sample letter of appeal, 242-244
International Federation for Hydrocephalus and Spina Bifida if,
185
Internet Grateful Med, 265-266
internet resources, 66-67, 192-194, 264-267
      hydrocephalus mailing list HYCEPH-L, 192-
193
      HydroHaven, 193
      Internet Grateful Med, 265-266
      Loansome DocTM, 266-267
      PubMed, 264-265
      usenet newsgroups, 193-194
intracranial pressure ICP, 9
intracranial pressure monitoring, 132-133
intraventricular hemorrhages IVH, 12-13
J[ Top ]
Johnson & Johnson, Codman systems, 87-89
K[ Top ]
Klonopin Clonazepam, 163
L[ Top ]
Lamictal Lamotrigine, 163
lateral fissure, 6
learning disabilities, 201-210
      attention deficit disorder, 201-204
      developing child's IEP, 213-214
learning disabilities continued
      implementation of IEP, 216-218
      Individuals with Disabilities Education Act
IDEA, 210-213
      nonverbal learning disorder NVLD, 204-210
least restrictive environment LRE, 212
legal rights, 267-273
      Americans with Disabilities Act ADA, 272-
273
      Biomaterials Access Assurance Act of 1997,
269-270
      Family and Medical Leave Act of 1993, 267-
268
      Social Security Disability Insurance SSDI,
270-272
lengthening procedures, 129-130
Loansome DocTM, 266-267
local education agency LEA, 213
loculated ventricles, 142
longitudinal fissure, 6
Love Letters, Inc., 181
lumboperitoneal LP shunts, 83
M[ Top ]
macrocephaly, 21
managing medical condition, 246
      doctor-patient relationship and, 251-255
      Durable Power of Attorney, 258-260
      emergencies, preparation for, 255
      family, friends and, 255
      legal rights and, 267-273
      lifestyle choices and, 249
      MedicAlert, 255-256
      medical history, 246-247
      medical records and, 246-249
      online resources, 264-270
      pregnancy and, 250-251
      researching medical texts, 260-263
      wallet-sized CTs, MRIs, 258
Maternal Hydrocephalus Study, 250-251
Medicaid, 231
MedicAlert, 255-257
medical expenses. See hospital billing; insurance
medical records, 246-247
      obtaining past, 247-248
      organizing, 248-249
Medicare, 231-232
Medi-Net, 63
Medos shunt , 88
Medtronic, PS Medical shunts, 89
meninges, 4-6
      arachnoid, 5
      dura mater, 5
      falx cerebri, 5-6
      pia mater, 5
meningitis, 11-12
mental difficulties, 24
misdiagnoses
      Alzheimer's disease, 33
      benign extra-axial fluid of infancy, 32
motor cortex, 6
MRI scans, 28-32
      advantages, disadvantages of, 31-32
      length of, 30
      preparing for, 29-30
      risks of, 30-31
      wallet-sized, 258
Mysoline Primidone, 163-164
N[ Top ]
National Hydrocephalus Foundation NHF, 186
National Practitioner Data Bank, 67-68
neural tube defects NTDs, 16-17
NeuroCare Group, Heyer-Shulte" shunts, 89-91
neuroendoscopic third ventriculostomy, 100-101
neurological exam, 25-28
      adults, 27
      children, 26-27
      full-term infants, 25
      premature infants, 25
Neurontin Gabapentin, 164
neuro-opthalmologists, 154
neuropsychological testing, 147-152
      benefits of, 149-150
      described, 151
      paying for, 148-149
      results of, 151-152
      selecting neuropsychologist, 150-151
neurosurgeons, 54
      communication skills and, 70
      emergency treatments, 56
      finding new relocating, 74-75
      interviewing, 68-69
      newly diagnosed patients, 55-56
      personalities of, 70-72
      relationship with, 69-70, 72-73
      selecting new, 56-57
      shunt revisions and, 143-144
      See also referrals
neurosurgeons, selecting
      commercial resources for, 63
      national practitioner data bank, 67-68
      Official ABMS Directory of Board Certified
Medical Specialists, The, 65-66
      online resources, 66-67
      print resources, 63-66
      16,638 Questionable Doctors, 66
      See also referrals
neurosurgery. See surgery
Newton SaFRTM, 92
NMT Neurosciences U.S., Inc., Cordis" shunt
      products, 91-92
non-communicating hydrocephalus, 13-14
nonsurgical treatments, 101
nonverbal learning disorder NVLD, 204-210
      causes of, 204-205
      characteristics of, 205-207
      helping with, 207-210
normal-pressure hydrocephalus NPH, 14, 37
NovusTM shunt valve system, 89-90
nuclear cisternography, 27-28
O[ Top ]
obstructions, 133-135
      distal catheter, 134-135
      proximal catheter , 133-134
obstructive hydrocephalus, 13-14
occipital lobe, 7
oculomotor nerve, 153
Official ABMS Directory of Board Certified Medical Specialists, The,
65-66
Omnishunt" system, 91-92
online resources. See internet resources
ophthalmologists, 154-155
      neuro-opthalmologists, 154
      pediatric, 154
optic nerve, 152-153
Orbis-Sigma" system, 91
Otitic hydrocephalus, 13
P[ Top ]
parents, support for, 178-180, 182-183
parietal lobes, 6
Parinaud's syndrome, 24
pediatric ophthalmologists, 154
perceptual defects, 156
peritoneal pseudocysts, 142-143
Phenobarbital Luminal, Solfoton, 164
Phoenix Biomedical, Diamond? Valve and shunt system, 92
physician referrals, 58-59
Physicians Who Care advocacy group, 241
pia mater, 5
precocious puberty, 168-169
      causes of, 168
      symptoms of, 168-169
preexisting conditions, insurance and, 223-225
preferred provider organization PPO, 229
prefrontal cortex, 6
pregnancy, 250-251
proximal catheter, 77
      obstructions, 133-134
PS Medical shunts, 89
PubMed, 264-265
R[ Top ]
radioisotope cisternography, 27-28
radionuclide shuntogram, 130-131
recovery
      follow-up visits, 124
      at home, 123-124
      in hospital, 122-123
referrals
      insurance/HMO, 59-60
      physician, 58-59
      word-of-mouth, 60-61
      See also neurosurgeons, selecting new
researching medical texts, 260
      Internet Grateful Med, 265-266
      Loansome Doc?, 266-267
      medical libraries, 263-264
      online resources, 264-267
      public libraries, 260-263
      PubMed, 264-265
responses to diagnosis, 39-45
      anger, 43-44
      confusion, numbness, 40
      denial, 40-41
      fear, 42-43
      friends, 49-50
      hope, 45
      patients, 45-46
      physical, 44-45
      relief, 39-40
      sadness, 41-42
      siblings, 46-48
      spouses, 50-52
      See also diagnosis
rubella, 10
S[ Top ]
schizencephaly, 19
school. See learning disabilities
school absences, 198-200
      informing teacher, school regarding, 198-199
      involving teachers, classmates and, 199
      returning after, 200
seizures, 156-160
      antiseizure medication, questions to ask
regarding, 160
      causes of, 156-157
      diagnosis of, 159
      first aid for, 166-168
      monitoring, 159-160
      partial, generalized, 158-159
      phases of, 157-158
      surgery for, 166
      treating, 160-168
shunt infections, 137-139
      avoiding, 139
      causes of, 138
      symptoms of, 137-138
      treating, 138-139
shunt revisions
      chronic problems and, 144-145
      complications, signs of and, 126-129
      complications and, 140-143
      defined, 126
      infections and, 137-139
      lengthening procedures and, 129-130
      obstructions and, 133-135
      silicone allergies and, 140
      subdural hematomas, 135-137
      surgeons, experience of and, 143-144
      testing for problems and, 130-133
shunts
      body position changes and, 79-80
      common features of, 85-86
      differences among, 84-86
      how, works, 77-78
      lumboperitoneal LP, 83
      manufacturers of, 86
      manufacturing, testing, 85
      materials, components of, 85
      parts of, 77
      placement of, 80-84
      placement operations for, 97-101
      valve pressure readings, 79
      ventriculoatrial VA, 81-83
      ventriculofermoral VF, 83
      ventriculo-gallbladder VGB, 84
      ventriculogastric VG, 84
      ventriculoperitoneal VP, 81
      ventriculopleural VPl, 83
      ventriculoureter VU, 84
      See also specific manufacturers; surgery
shunt tap, 131-132
shunt valve, 77
siblings
      diagnosis, impact on, 46-48
      support groups for, 181-182
side effects
      common complaints, 146-147
      diabetes insipidus, 169-171
      eye, visual problems, 152-156
      neuropsychological, testing for, 147-152
      precocious puberty, 168-169
      seizures, 156-160
      See also neuropsychological testing
silicone allergies, 140
16,638 Questionable Doctors, Public Citizen: Health Research
Group, 66
slit ventricle syndrome SVS, 143
socialized medicine, 232-233
Social Security Disability Insurance SSDI, 270-272
spina bifida SB, 16-17
state education agency SEA, 213
subarachnoid, 5
[_IX-1_]
subdural hematomas SDH, 135-137
      detecting, 136
      treatment for, 136-137
subdural space, 5
sunsetting eyes, 24, 155
superior sagittal sinus, 2
support
      clergy, 183-184
      conferences on hydrocephalus, 190-191
      employee assistance programs EAPs, 190
      hospital social workers, 177
      internet and, 192-194
      need for, 172-174
      sources of, 174-176
      starting local group for, 194-196
      See also counseling
[_IX-1_]
[_IX-2_]
support groups, 177-183
      Center for Attitudinal Healing CAH, 180
      Children's Hopes and Dreams Foundation, 181
      for children, 180-181
      for parents, 178-180
      for siblings, 181-182
      Hydrocephalus Foundation, Inc. HyFI, 179
      Love Letters, Inc., 181
      parent-to-parent, 182-183
      starting local, 194-196
support organizations, 184-186
      Association for Spina Bifida and
Hydrocephalus ASBAH, 184
      Brain Tumor Society, The TBTS, 184
      Hydrocephalus Association, 185
      Hydrocephalus Foundation, Inc. HyFI, 185
      Hydrocephalus Support Group, Inc. HSG, 185
      National Hydrocephalus Foundation NHF, 186
surgery
      anesthesia, 94-96
      for seizures, 166
      infants, children, 61-63
      preoperative evaluation, 94
      questions to ask before, 93-94
      recovery, postoperation, 97
      shunt placement operations, 97-101
      See also hospitalization; recovery
symptoms, 20-21
      abnormal head growth, 21-33
      concentration, mental difficulties, 24
      gait disturbance, 23
      headaches, 23
      visual problems, 23-24
T[ Top ]
tax-deductible medical expenses, 236
Tegretol Carbamazepine; Atretol, Epitol, Tegretol-XR, 164-165
temporal lobes, 6
testing
      intracranial pressure monitoring, 132-133
      radionuclide shuntogram, 130-131
      for shunt problems, 130-133
      shunt tap, 131-132
thalamus, 8
toxoplasmosis, 10
treatment, 76
      shunts, 77
      See also surgery
treatments
      endoscopic third ventriculostomy, 100-101
      nonsurgical, 101
TriCare CHAMPUS, 230-231
trochlear nerve, 153
tumors, 12
U[ Top ]
ultrasound, 28
Uni-Shunt, 87-88
unmanaged care fee-for-service, 228
U.S. Department of Health and Human Services DHHS, 67-68
V[ Top ]
Valium Diazepam, 165
Vein of Galen malformation VGM, 17-18
ventricular system, 7-9
      choroid plexus, 7
      foramen, 7
      lateral ventricles, 7
ventriculoatrial VA shunts, 81-83
      placement of, 99-100
ventriculofemoral VF shunts, 83
ventriculo-gallbladder VGB shunts, 84
ventriculogastric VG shunts, 84
ventriculoperitoneal VP shunts, 81
      placement of, 98-99
ventriculopleural VPl shunts, 83
ventriculoureter VU shunts, 84
vision problems, 23-24
      sunsetting, 24
      See also eye, visual problems
X[ Top ]
X-linked hydrocephalus, 10
Z[ Top ]

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