Childhood Brain and Spinal Cord Tumors: A guide for families, friends and caregivers by Tania Shininski-Maher, Catherine Woodman, & Nancy Keene

childhood-brain-and-spinal-cord-tumors

Below is the table of contents for the book Childhood Brain and Spinal Cord Tumors, available at the Don and Cathy Jacobs Health Education Center at the University of Kentucky.

Introduction

  1. Diagnosis
    1. Signs and Symptoms
    2. Where Should Your Child Receive Treatment?
    3. Physical Responses
    4. Emotional Responses
    5. The Immediate Future
  2. The Brain and Spinal Cord
    1. The Brain
    2. Spinal Cord
    3. Ventricular System
    4. Increased Intracranial Pressure
    5. From the CNS to the Body
  3. Types of Tumors
    1. Who gets Central Nervous System tumors?
    2. Types of brain and spinal cord tumors
    3. Treatment
  4. Telling your child and others
    1. Telling your child
    2. Telling the siblings
    3. Notifying the family
    4. Notifying friends and neighbors
    5. Notifying your child’s school
    6. Using technology to communicate
  5. Choosing a treatment
    1. Treatment basics
    2. Standard treatment
    3. The protocol
    4. Clinical trials
    5. Making a decision
    6. Protocol Changes
  6. Coping with Procedures
    1. Planning for Procedures
    2. Pain Management
    3. Procedures
  7. Forming a Partnership with the Treatment Team
    1. The Hospital
    2. Finding a Neurosurgeon and Neuro-Oncologist
    3. Choosing a Hospital
    4. Types of Relationships
    5. Communications
    6. Getting a second opinion
    7. Conflict resolution
    8. Changing doctors
  8. Hospitalization
    1. The room
    2. The floor
    3. Food
    4. Parking
    5. The endless waiting
    6. Working with the staff
    7. Being an advocate for your child
    8. Playing
  9. Venous Catheters
    1. External catheter
    2. Subcutaneous port
    3. Peripherally inserted central catheter
    4. Cost
    5. Choosing not to use a catheter
    6. Making a decision
    7. Adhesives

    10. Surgery

    1. The Neurosurgeon
    2. Types of surgery
    3. Pre-surgical evaluation
    4. Anesthesia
    5. The surgery
    6. Postoperative complications
    7. Rehabilitation
    8. Discharge

    11. Chemotherapy

    1. How chemotherapy drugs work
    2. How chemotherapy drugs are given
    3. Dosages
    4. Variability in responses to medication
    5. Questions to ask the doctor
    6. Guidelines for calling the doctor
    7. Chemotherapy drug list
    8. Chemotherapy drugs and their possible side effects
    9. Prophylactic antibiotics
    10. Colony Stimulating factors
    11. Antinausea drugs used during chemotherapy
    12. Drugs used to relieve pain
    13. Typical anesthetics to relieve pain
    14. Complementary treatments
    15. Alternative treatments

    12. Common Side Effects of Treatment

    1. Bed wetting
    2. Changes in taste and smell
    3. Constipation
    4. Dental problems
    5. Diarrhea
    6. Fatigue and weakness
    7. Hair loss
    8. Learning Disabilities
    9. Low blood cell counts
    10. Mouth and throat sores
    11. Nausea and vomiting
    12. Rehabilitation needs
    13. Serious illnesses
    14. Skin and nail problems
    15. Can pets transmit disease?

    13. Radiation Therapy

    1. Parts of the body where radiation is used
    2. Types of radiation therapy
    3. Who needs radiation therapy?
    4. Questions to ask about radiation treatment
    5. Where should your child go for radiation treatment?
    6. Radiation oncologist
    7. Radiation therapist
    8. Immobilization devices
    9. Sedation
    10. What is radiation treatment like?
    11. Possible short-term side effects
    12. Possible long-term side effects

    14. Stem Cell Transplantation

    1. What is a peripheral blood stem cell transplant?
    2. When is a transplant necessary?
    3. Choosing a transplant center
    4. Paying for the transplant
    5. Stem cell harvest and storage
    6. The transplant
    7. Emotional responses
    8. Complications after the transplant
    9. Long-term side effects

    15. Siblings

    1. Emotional responses of the siblings
    2. Sibling experiences
    3. Helping siblings cope
    4. Positive outcomes for the siblings

    16. Family and Friends

    1. Restructuring family life
    2. The extended family
    3. Friends

    17. Communication and behavior

    1. Communication
    2. Communication behavioral changes in children
    3. Communication behavioral changes in parent
    4. Improving communication
    5. Checklist for parenting stressed children

    18. School

    1. Keeping the school informed
    2. Keeping the teacher and classmates involved
    3. Keeping up with schoolwork
    4. Helping siblings
    5. Returning to school
    6. Avoiding communicable diseases
    7. Section 504 of the Rehabilitation Act of 1973
    8. Individuals with Disabilities Education Act
    9. Individual Healthcare Plan (IHCP)
    10. Your Legal rights (Canada)
    11. The terminally ill child and school

    19. Sources of support

    1. Hospital social workers
    2. Support groups for parents
    3. Online support groups
    4. Support groups for children with cancer
    5. Support groups for siblings
    6. Parent-to-parent programs
    7. Hospital resource rooms
    8. Clergy and religious community
    9. Individual and family counseling
    10. Camps

    20. Nutrition

    1. How treatment affects eating
    2. What kids should eat
    3. Making eating fun and nutritious
    4. Vitiman supplements
    5. What kids really eat
    6. Dietitian/Nutritionist
    7. Parent advice
    8. Commercial nutritional supplements
    9. Feeding by tube and IV

    21. Medical and financial record keeping

    1. Keeping medical records
    2. Keeping financial records
    3. Coping with insurance
    4. Sources of financial assistance

    22. End of treatment and beyond

    1. Emotions
    2. Last treatment
    3. Catheter removal
    4. Ceremonies
    5. What is normal?
    6. Initial follow-up care
    7. Long-term follow up care
    8. Treatment summaries
    9. Employment
    10. Health insurance

    23. Recurrence

    1. Signs and Symptoms
    2. Emotional responses
    3. Goal setting and treatment planning
    4. Making a decision about treatment

    24. Death and bereavement

    1. Transitioning from active treatment
    2. Supportive care
    3. Dying in the hospital
    4. Dying at home
    5. Involving siblings
    6. The funeral
    7. The role of family and friends
    8. Sibling grief
    9. Parental grief

    Appendices

    Blood tests and what they mean

    1. Values of healthy children
    2. Values of children on chemotherapy
    3. Common blood tests
    4. Your child’s pattern

    Resource Organizations

    1. Solid tumor organizations (United States)
    2. Other Service Organizations (United States)
    3. Camps
    4. Emotional and legal support
    5. Financial help
    6. Free air services (United States)
    7. Insurance
    8. Medications (low-cost or free)
    9. Sports organizations
    10. Stem-cell transplantation
    11. Wish fulfillment organizations (United States)
    12. Stem cell transplantation (United States)

    Books, websites and support groups

    1. How to find the information you need
    2. Books
    3. Websites
    4. Online support groups

 

 

 

 

 

 

 

 

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Childhood Cancer: A Parent’s Guide to Solid Tumor Cancers by Anne Spurgeon and Nancy Keene

childhood-cancer-a-parents-guide-to-solid-tumor-cancers

Below is a list of topics covered in this book, available at the Don and Cathy Jacobs Health Education Center at the University of Kentucky.

The following types of tumors are covered in this book: Kidney Tumors, Liver Tumors, Neuroblastoma, Retinoblastoma, and Sarcomas.

Introduction

Diagnosis

  1. Signs and Symptoms
  2. Where should your child receive treatment?
  3. Physical responses
  4. Emotional responses
  5. The immediate future

Bone Sarcomas

  1. The Skeletal System
  2. Osteosarcoma
  3. Ewing Sarcoma family of tumors
  4. Information on standard treatment

Liver Cancers

  1. The Liver
  2. Signs and Symptoms
  3. Diagnosis
  4. Heptoblastoma
  5. Heptocellular Carcinoma
  6. Undifferentiated embryonal sarcoma
  7. Choricocarcinoma of the liver
  8. Liver transplantation
  9. Information on standard treatments

Neuroblastoma

  1. The sympathetic nervous system
  2. The adrenal glands
  3. Who gets Neuroblastoma?
  4. Signs and Symptoms?
  5. Diagnosis
  6. Staging
  7. Prognosis
  8. Treatment
  9. Information on standard treatments
  10. Newer treatment approaches

Retinoblastoma

  1. The eye
  2. Who gets Retinoblastoma?
  3. Signs and Symptoms
  4. Diagnosis and Staging
  5. Prognosis
  6. Treatment
  7. Information on Standard Treatments

Soft Tissue Sarcomas

  1. Muscles and connective tissues
  2. Signs and symptoms
  3. Diagnosis of soft tissue sarcoma
  4. Rhabdomyosarcoma
  5. Non-rhabdomyosarcoma tissue sarcomas
  6. Information on standard treatments

Kidney Tumors

  1. The Kidneys
  2. Signs and symptoms of kidney tumors
  3. Wilms tumor
  4. Other types of childhood kidney cancers
  5. Information on standard treatments

Telling Your Child and Others

  1. Telling your child
  2. Telling the siblings
  3. Notifying the family
  4. Notifying friends and neighbors
  5. Notifying your child’s school

Choosing a treatment

  1. Treatment basics
  2. Standard treatment
  3. The protocol
  4. Clinical trials
  5. Making the decision
  6. The entire clinical trial document
  7. Removing your child from a clinical trial
  8. Protocol changes

Coping with Procedures

  1. Planning for procedures
  2. Pain management
  3. Procedures

Forming a partnership with the medical team

  1. Choosing a hospital
  2. The tumor board
  3. Finding an oncologist
  4. Types of relationships
  5. Communication
  6. Getting a second opinion
  7. Conflict resolution
  8. Changing doctors

Hospitalization

  1. The room
  2. The floor
  3. Food
  4. Parking
  5. The endless waiting
  6. Working with the staff
  7. Staying with your child
  8. Preventing mistakes
  9. Playing

Venous Catheters

  1. External catheter
  2. Subcutaneous port
  3. Peripherally inserted central catheter
  4. Cost
  5. Choosing not to use a catheter
  6. Making a decision
  7. Adhesives

Surgery

  1. Pediatric Surgeons
  2. Types of surgery
  3. Pre-surgical evaluation
  4. Anesthesia
  5. The surgery
  6. Discharge
  7. Rehabilitation

Chemotherapy

  1. How chemotherapy drugs work
  2. How chemotherapy drugs are given
  3. Dosages
  4. Different responses to medication
  5. Questions to ask the doctor
  6. Guidelines for calling the doctor
  7. Chemotherapy drug list
  8. Chemotherapy drugs and their possible side effects
  9. Prophylactic antibiotics
  10. Colony Stimulating factors
  11. Antinausea drugs used during chemotherapy
  12. Drugs used to relieve pain
  13. Typical anesthetics to relieve pain
  14. Complementary treatments
  15. Alternative treatments

Common Side Effects of Treatment

  1. Bed wetting
  2. Changes in taste and smell
  3. Constipation
  4. Dental problems
  5. Diarrhea
  6. Fatigue and weakness
  7. Hair loss
  8. Learning Disabilities
  9. Low blood cell counts
  10. Mouth and throat sores
  11. Nausea and vomiting
  12. Rehabilitation needs
  13. Serious illnesses
  14. Skin and nail problems
  15. Can pets transmit disease?

Radiation Therapy

  1. Children who need radiation therapy
  2. Types of radiation therapy
  3. Questions to ask about radiation treatment
  4. Where should your child go for radiation treatment?
  5. Radiation oncologist
  6. Radiation therapist
  7. Immobilization devices
  8. Sedation
  9. What to expect during a radiation treatment?
  10. Possible short-term side effects
  11. Possible long-term side effects

Stem Cell Transplantation

  1. What is a peripheral blood stem cell transplant?
  2. When is a transplant necessary?
  3. Choosing a transplant center
  4. Stem cell harvest and storage
  5. The transplant
  6. Emotional responses
  7. Paying for the transplant
  8. Complications after the transplant
  9. Long-term side effects

Siblings

  1. Emotional responses of the siblings
  2. Sibling experiences
  3. Helping siblings cope
  4. Positive outcomes for the siblings

Family and Friends

  1. Restructuring family life
  2. The extended family
  3. Friends

Communication and behavior

  1. Communication behavioral changes in children
  2. Communication behavioral changes in parents
  3. Improving communication and discipline

School

  1. Keeping the school informed
  2. Keeping the teacher and classmates involved
  3. Keeping up with schoolwork
  4. Helping siblings
  5. Returning to school
  6. Avoiding communicable diseases
  7. After treatment
  8. Federal laws
  9. Section 504 of the Rehabilitation Act of 1973
  10. Individuals with Disabilities Education Act
  11. Individual Healthcare Plan (IHCP)
  12. Your Legal rights (Canada)
  13. The terminally ill child and school

Sources of support

  1. Hospital social workers
  2. Support groups for parents
  3. Online support groups
  4. Support groups for children with cancer
  5. Support groups for siblings
  6. Parent-to-parent programs
  7. Hospital resource rooms
  8. Clergy and religious community
  9. Individual and family counseling
  10. Camps

Nutrition

  1. How treatment affects eating
  2. What kids should eat
  3. Making eating fun and nutritious
  4. Vitiman supplements
  5. What kids really eat
  6. Dietitian/Nutritionist
  7. Parent advice
  8. Commercial nutritional supplements
  9. Feeding by tube and IV

Medical and financial record keeping

  1. Keeping medical records
  2. Keeping financial records
  3. Coping with insurance
  4. Sources of financial assistance

End of treatment and beyond

  1. Emotions
  2. Last treatment
  3. Catheter removal
  4. Ceremonies
  5. What is normal?
  6. Initial follow-up care
  7. Long-term follow up care
  8. Treatment summaries
  9. Employment
  10. Health insurance

Recurrence

  1. Signs and Symptoms
  2. Emotional responses
  3. Goal setting and treatment planning
  4. Making a decision about treatment

Death and bereavement

  1. Transitioning from active treatment
  2. Supportive care
  3. Dying in the hospital
  4. Dying at home
  5. Involving siblings
  6. The funeral
  7. The role of family and friends
  8. Sibling grief
  9. Parental grief

Appendices

Blood tests and what they mean

  1. Values of healthy children
  2. Values of children on chemotherapy
  3. Common blood tests
  4. Your child’s pattern

Resource Organizations

  1. Solid tumor organizations (United States)
  2. Other Service Organizations (United States)
  3. Camps
  4. Emotional and legal support
  5. Financial help
  6. Free air services (United States)
  7. Insurance
  8. Medications (low-cost or free)
  9. Sports organizations
  10. Stem-cell transplantation
  11. Wish fulfillment organizations (United States)
  12. Stem cell transplantation (United States)

Books, websites and support groups

  1. How to find the information you need
  2. Books
  3. Websites
  4. Online support groups