Below are some print books (many are also available as ebooks) that parents of children with brain and spinal cord tumors have found helpful.
Alex’s Lemonade Stand Treatment Journal. The Alex’s Lemonade Stand Foundation provides a free treatment journal to help parents of children with cancer keep track of important information. Parents can request a hard copy of the journal or can create their own online journal at www.alexslemonade.org/childhood-cancer-treatment-journal.
Lazar, Linda; Crawford, Bonnie. In My World. (1999). Available by calling (866) 218-0101 or visiting www.centering.org. Journal for teens coping with life-threatening illnesses. Includes chapters called “Things Accomplished in My Life,” “I’ve Been Thinking,” and “Questions I’d Like Answered.”
Bleyer, Archie; Barr, Ronald. Cancer in Adolescents and Young Adults. (2007). Medical textbook.
Institute of Medicine. Childhood Cancer Survivorship, Improving Care and Quality of Life. (2003). Comprehensive coverage of survivorship issues, including late effects of treatment and how to obtain survivorship care. Available as full text online or as a paperback ($29.70) through the National Academies Press website at www.nap.edu.
Physicians’ Desk Reference. (2013). Reference book, published yearly, which contains accurate information about all Food and Drug Administration approved drugs. Technical language. Available at the reference desk in most libraries.
Pizzo, Philip A. and Poplack, David, eds. Principles and Practice of Pediatric Oncology, 6th ed. (2010). Medical textbook.
Fesler, Rene. Alicia’s Updates: A Mother’s Memoir of Pediatric Cancer. (2009). This book chronicles a family’s journey through Alicia’s treatment for a spinal cord tumor and the impact it had on their family and those around them. Honest and friendly, this book helps parents of a child with cancer feel less alone.
Strumpf, Katie. I Never Signed Up for This! An Upfront Guide to Dealing with Cancer at a Young Age. (2006). Written by a 25-year-old survivor with an upbeat attitude, this book covers returning to school, dealing with parents and doctors, losing your hair, and dealing with the fear of death.
MacLellan, Scott. Amanda’s Gift. (1998). A review of the emotional and financial impact of a child’s 7-year fight with cancer and other illnesses, including a liver transplant. It covers the complexities of insurance coverage and all areas of life as a caregiver, including the impact on faith and marriage.
Domozych, Patrice Mary; Buggee, Heather; Condra, Stephanie. Hope Is Here To Stay. (2009). A 35-page illustrated story about Lauren, her family, and her treatment for a pediatric brain tumor.
General reading (for adults)
American Brain Tumor Association (ABTA). About Brain Tumors: A Primer for Patients and Caregivers. (2012). Available free online at www.abta.org/secure/about-brain-tumors-a-primer.pdf. The ABTA also publishes many informational pamphlets about specific types of brain and spinal cord tumors and individual treatments, including Chemotherapy; Ependymoma; Glioblastoma and Malignant Astrocytoma; Medulloblastoma; Conventional Radiation Therapy; Stereotactic Radiosurgery; and many others.
Bracken, Jean Munn. Children with Cancer: A Comprehensive Reference Guide for Parents. (2010). Comprehensive coverage of childhood cancers, written by a librarian who is the parent of a survivor of a rare cancer.
Cochran, Lizzie. Singing Away: Stories of Faith, Hope & Love in the Fight Against Childhood Cancer. (2013). True stories written by families of children with cancer.
Jampolsky, Gerald G. Advice to Doctors and Other Big People from Kids. (1991). Book full of stories from children with catastrophic illnesses that offers suggestions and expresses their feelings about healthcare workers. Wise and poignant, it reminds us how perceptive and aware children of all ages are, and how necessary it is to involve them in medical decisions.
Kushner, Harold. When Bad Things Happen to Good People, revised ed. (2004). Rabbi Kushner wrote this comforting book about how people of faith deal with catastrophic events.
National Cancer Institute. 21st Century Pediatric Cancer Sourcebook: Brain and Spinal Cord Tumors. (2011). Starting with the basics, and advancing to detailed patient-oriented and physician-quality information, this comprehensive ebook gives families, caregivers, nurses, and doctors information about the diagnosis and treatment of these diseases.
National Cancer Institute. Young People with Cancer: A Handbook for Parents. This booklet describes the different types of childhood cancer, medical procedures, dealing with the diagnosis, family issues, and sources of information. To obtain a free copy, call (800-4-CANCER) / (800) 422-6237, or read it at www.cancer.gov/cancertopics/youngpeople.
Sourkes, Barbara M. Armfuls of Time: The Psychological Experience of the Child with a Life-Threatening Illness. (1996). Written by a psychologist, this eloquent book features the voices and artwork of children with cancer. It clearly describes the psychological effects of cancer on children and explains the power of the therapeutic process.
Woznick, Leigh; Goodheart, Carol. Living With Childhood Cancer: A Practical Guide to Help Families Cope. (2001). Written by a mother–daughter team, this book draws on the authors’ experiences with cancer, as well as their professional expertise and stories from others to help families address the psychological impact of childhood cancer.
Zeltzer, Paul. Brain Tumors: Leaving the Garden of Eden—A Survival Guide to Diagnosis, Learning the Basics, Getting Organized, and Finding Your Medical Team. (2004). This book includes chapters about all major types of brain tumors, medications, using the Internet to search for information, and getting a second opinion.
General reading (for children)
Bourgeois, Paulette. Franklin Goes to the Hospital. (2000). Franklin the turtle goes to the hospital for an operation to repair his broken shell, and everyone thinks he’s being very brave. But Franklin is only pretending to be fearless. He’s worried that his x-rays will show just how frightened he is inside. For young children.
Crary, Elizabeth. Dealing with Feelings. I’m Frustrated; I’m Mad; I’m Sad Series. (1992). Fun, game-like books to teach young children how to handle feelings and solve problems.
Keene, Nancy; Romain, Trevor. Chemo, Craziness & Comfort: My Book About Childhood Cancer. (2002). A 200-page resource that provides practical information for children diagnosed with cancer between 6 and 12 years of age. Warm and funny illustrations and easy-to-read text help the child (and parents) make sense of cancer and its treatment. Available free from www.acco.org/Information/Resources/Books.aspx.
Krisher, Trudy. Kathy’s Hats: A Story of Hope. (1992). A charming book, for children ages 5 to 10, about a girl whose love of hats comes in handy when chemotherapy makes her hair fall out.
Richmond, Christina. Chemo Girl: Saving the World One Treatment at a Time. (1996). Written by a 12-year-old girl with rhabdomyosarcoma, this book describes a super-hero who shares hope and encouragement.
Rogers, Fred. Going to the Hospital. (1997). With pictures and words, TV’s beloved Mr. Rogers helps children ages 3 to 8 learn about hospitals.
General reading (for teens)
Dorfman, Elena. The C-Word: Teenagers and Their Families Living with Cancer. (1998). Contains photos and the stories of five teenagers with cancer.
Gravelle, Karen. Teenagers Face to Face With Cancer. (2000). Sixteen teenagers talk openly about their experiences with cancer—from the physical difficulties of coping with treatment to the emotional trauma, which can be as painful as the illness itself. A heartfelt, honest book that demonstrates clearly how having cancer changes young people and how strength can emerge from struggles.
General reading (for siblings)
American Cancer Society. When Your Brother or Sister Has Cancer. To obtain a free copy, call (800) 227-2345. This 16-page booklet describes the emotions felt by siblings of a child with cancer.
O’Toole, Donna. Aarvy Aardvark Finds Hope: A Read Aloud Story for People of All Ages About Loving and Losing, Friendship and Hope. (1988). Aarvy Aardvark and his friend Ralphie Rabbit show how a family member or friend can help another in distress.
Dodd, Mike. Oliver’s Story. (2004). A 40-page illustrated book for 3- to 8-year old siblings of children diagnosed with cancer. Order a free copy from www.acco.org/Information/Resources/Books.aspx.
Peterkin, Allan. What About Me? When Brothers and Sisters Get Sick. (1992). Describes the feelings of siblings whose brother or sister is hospitalized.
Hoffman, Ruth (editor). Understanding the Journey, A Parent’s Guide to DIPG. (2012). A comprehensive resource with chapters written by pediatric neuro-oncology experts that covers all aspects of treating a child with DIPG. Order a free copy from www.acco.org/Information/Resources/Books.aspx.
About Hydrocephalus: A Guide for Patients and Families. Free booklet from the Hydrocephalus Association available at www.hydroassoc.org.
Mohanty, Aaron. 100 Questions & Answers About Hydrocephalus. (2011). Provides authoritative, straightforward answers to the most common questions asked by children with hydrocephalus and their parents.
National Cancer Institute. Radiation Therapy and You: Support for People With Cancer. (2007). A 52-page booklet that explains conventional radiation, what to expect, possible side effects, and follow-up care. Available online at www.cancer.gov/cancertopics/coping/radiation-therapy-and-you.
Hoffman, Ruth (editor). Educating the Child With Cancer: A Guide for Parents and Teachers, 2nd ed. (2011). An book written by top researchers in the field that includes parents’ personal experiences. Order a free copy from www.acco.org/Information/Resources/Books.aspx.
Leukemia and Lymphoma Society. Living and Learning with Cancer. Booklet about returning to school and obtaining accommodations (appropriate for children with any type of cancer). Available at www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/childhoodbloodcancer/pdf/learninglivingwithcancer.pdf.
Princeton Review. K&W Guide to College Programs and Services for Students with Learning Disabilities or Attention Deficit/Hyperactivity Disorder, 11th ed. (2011). Excellent reference that is available at most large libraries.
Silver, Larry. The Misunderstood Child: Understanding and Coping with Your Child’s Learning Disabilities, 4th ed. (2006). Comprehensive discussion about positive treatment strategies that can be implemented at home and in school to help children with learning disabilities.
Faber, Adele; Mazlish, Elaine. Siblings Without Rivalry: How to Help Your Children Live Together So You Can Live Too, revised edition. (2012). Offers dozens of simple and effective methods to reduce conflict and foster a cooperative spirit. Helpful information for all stressed parents.
Murray, Gloria; Jamplosky, Gerald (editors). Straight from the Siblings: Another Look at the Rainbow. (1995). Written by 16 children who have brothers and sisters with a life-threatening illness who met at the Center for Attitudinal Healing. A must-read for both parents and siblings.
Stem cell transplantation
Stewart, Susan. Bone Marrow and Blood Stem Cell Transplants: A Book of Basics for Patients. Available by calling (888) 597-7674 or visiting www.bmtinfonet.org. A 228-page book that clearly explains the medical aspects of bone marrow and blood stem cell transplantation, the different types of transplants, emotional and psychological considerations, pediatric transplants, complications, and insurance issues. Technically accurate, yet easy to read.
Stewart, Susan. Autologous Stem Cell Transplants: A Handbook for Patients. (2000). Order by calling (888) 597-7674 or visiting www.bmtinfonet.org.
Keene, Nancy; Hobbie, Wendy; Ruccione, Kathy. Childhood Cancer Survivors: A Practical Guide to Your Future, 3rd ed. (2012). A user-friendly, comprehensive guide about late effects of treatment for childhood cancer. Full of stories from survivors of all types of childhood cancer. Also covers emotional issues, insurance, jobs, relationships, and ways to stay healthy.
Terminal illness and bereavement
Callanan, Maggie; Kelley, Patricia. Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying. (2012). Written by two hospice nurses with decades of experience, this book helps families understand and communicate with terminally ill patients. Compassionate, comforting, and insightful, this book movingly teaches how to listen to and comfort the dying.
Orloff, Stacy; Huff, Susan (editors). Home Care for the Seriously Ill Child: A Manual for Parents. (2003). Available from Children’s Hospice International by calling (800) 242-4453 or online at http://22.214.171.124/publications-hospice-care-programs-and-support. Helps parents explore the possibility of home care for the dying child. Contains practical information about what to expect, methods of pain relief, and management of medical problems.
Price, Mary Kathleen. Dance When the Brain Says No. (2009). A mother’s memoir about her vivacious and strong-willed daughter who was diagnosed with medulloblastoma when she was 19 and died 2 ½ years later.
Bereavement: A Magazine of Hope and Healing. For a free copy or to subscribe, call (888) 604-4673 or go online at www.bereavementmag.com.
Bernstein, Judith R. When the Bough Breaks: Forever After the Death of a Son or Daughter. (1998). A serious and sensitive book about how to cope with the loss of a child.
Kubler-Ross, Elisabeth. On Children and Death: How Children and Their Parents Can and Do Cope With Death. (1997). In this comforting book, Dr. Kubler-Ross offers practical help for living through the terminal period of a child’s life with love and understanding. Discusses children’s knowledge about death, visualization, letting go, funerals, help from friends, and spirituality.
Wild, Laynee. I Remember You: A Grief Journal, 2nd ed. (2000). A journal for recording written and photographic memories during the first year of mourning. Beautiful book filled with quotes and comfort.
Sibling grief (adult reading)
Grollman, Earl. Talking About Death: A Dialogue Between Parent and Child, 4th ed. (2011). One of the best books for helping children cope with grief. Contains a children’s read-along section to explain and explore children’s feelings. In very comforting language, the book teaches parents how to explain death, understand children’s emotions, understand how children react to specific types of death, and know when to seek professional help.
Schaefer, Dan; Lyons, Christine. How Do We Tell the Children? A Step-by-Step Guide for Helping Children and Teens Cope When Someone Dies, 4th ed. (2010). If your terminally ill child has siblings, read this book. In straightforward, uncomplicated language, the authors describe how to explain the facts of death to children and teens and show how to include the children in the family support network, laying the foundation for the healing process to begin. Also includes a crisis section for quick references about what to do in a variety of situations.
White, P. Gill. Sibling Grief: Healing After the Death of a Sister or Brother. (2008). Endorsed by the Bereaved Parents of the USA, this book validates the emotional significance of sibling loss, drawing on clinical experience, research, and wisdom from hundreds of bereaved siblings to explain the five healing tasks specific to sibling grief.
Sibling grief (young child)
Buscaglia, Leo. The Fall of Freddy the Leaf: A Story of Life for All Ages. (1982). This wise yet simple story about a leaf named Freddy explains death as a necessary part of the cycle of life.
Hickman, Martha. Last Week My Brother Anthony Died. (1984). A touching story of a pre-schooler’s feelings when her infant brother dies. The family’s minister (a bereaved parent himself) comforts her by comparing feelings to clouds—always there but ever changing.
Sibling grief (school-aged children)
Romain, Trevor. What on Earth Do You Do When Someone Dies? (1999). Warm, honest words and beautiful illustrations help children understand and cope with grief.
Temes, Roberta. The Empty Place: A Child’s Guide Through Grief. (1992). Explains and describes feelings after the death of a sibling, such as the empty place in the house, at the table, and in a sibling’s heart.
Sibling grief (teenagers)
Gravelle, Karen; Haskins, Charles. Teenagers Face to Face with Bereavement. (2000). The perspectives and experiences of 17 teenagers comprise the heart of this book, which focuses on teens coping with grief.
Grollman, Earl. Straight Talk About Death for Teenagers: How to Cope with Losing Someone You Love. (1993). Wonderful book that talks to teens, not at them. Discusses denial, pain, anger, sadness, physical symptoms, and depression. Charts methods to help teens work through their feelings at their own pace.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. The Brain and Spinal Cord
- 3. Types of Tumors
- 4. Telling Your Child and Others
- 5. Choosing a Treatment
- 6. Coping with Procedures
- 7. Forming a Partnership with the Treatment Team
- 8. Hospitalization
- 9. Venous Catheters
- 10. Surgery
- 11. Chemotherapy
- 12. Common Side Effects of Chemotherapy
- 13. Radiation Therapy
- 14. Peripheral Blood Stem Cell Transplantation
- 15. Siblings
- 16. Family and Friends
- 17. Communication and Behavior
- 18. School
- 19. Sources of Support
- 20. Nutrition
- 21. Medical and Financial Record-keeping
- 22. End of Treatment and Beyond
- 23. Recurrence
- 24. Death and Bereavement
- 25. Looking Forward
- Appendix A. Blood Tests and What They Mean
- Appendix C. Books and Websites