We are all in the same boat, in a stormy sea, and we owe each other a terrible loyalty.
— G. K. Chesterton
Tania Shiminski-Maher, a nurse practitioner, has worked for more than 30 years with children and teens who have brain and spinal cord tumors. Catherine Woodman’s son Ethan is a long-term (12 years) survivor of medulloblastoma who is currently in college. She is also a psychiatrist who works at a major medical center. Nancy Keene’s daughter, diagnosed at age 3 with high-risk acute lymphoblastic leukemia, is now a 25 year old out in the working world. We understand that nothing prepares a parent for the utter devastation of having a child diagnosed with cancer. We have walked the path from that life-changing moment through information gathering, treatment, rehabilitation, and management of late effects. We know that fear and worry are lessened by having accurate information and hearing the stories of other children and families who have walked the path before us. And we are honored to share with you what we and many other parents and healthcare providers have learned.
What this book offers
This book is not autobiographical. Instead, we wanted to blend basic technical information in easy-to-understand language with stories and advice from many parents and children. We wanted to provide the insights and experiences of parents who have all felt the hope, helplessness, anger, humor, longing, panic, ignorance, warmth, and anguish of their children’s treatment for a brain or spinal cord tumor. We wanted parents to know how other children react to treatment, and we wanted to offer tips to make the experience easier.
Obtaining a basic understanding of topics such as medical terminology, common side effects of treatment, and how to interpret laboratory results can help improve quality of life for the whole family. Learning how to develop a partnership with your child’s doctor can vastly increase your family’s peace of mind. Hearing parents describe their own emotional ups and downs, how they coped, and how they molded their family life around hospitalizations is a tremendous comfort. And knowing there are other family members out there who hold their breath with each observation scan hoping for stable results can help you feel less alone. Our hope is that parents who read this book will find understandable medical information, obtain advice that eases their daily life, and feel empowered to be strong advocates for their children.
The parent stories and suggestions in this book are absolutely true, although some names have been changed to protect children’s privacy. Every word has been spoken by the parent of a child with cancer, a sibling of a child with cancer, or a childhood cancer survivor. There are no composites, no editorializing, and no rewrites—just the actual words of people who wanted to share what they learned with families of children newly diagnosed with a brain or spinal cord tumor.
How this book is organized
We have organized the book sequentially in an attempt to parallel most families’ journeys through treatment. We all start with diagnosis, then learn about the tumor and its treatment, try to cope with procedures, adjust to medical personnel, and deal with family and friends. We all seek out various methods of support and struggle with the strong feelings felt by of our child with a brain or spinal cord tumor, our other children, and ourselves. We try to work with our child’s school to provide the richest and most appropriate education for our ill child. And, unfortunately, we sometimes must grieve, either for our child or for the child of a close friend we have made in our new community of families dealing with brain tumors.
Because it is tremendously hard to focus on learning new things when you are emotionally battered and extremely tired, we have tried to keep each chapter short. The first time we introduce a medical term, we define it in the text. Because both boys and girls get brain and spinal cord tumors, we did not adopt the common convention of using only masculine personal pronouns (e.g., he, him). We do not like using he/she, so we alternated personal pronouns (e.g., she, he) within chapters. This may seem awkward as you read, but it prevents half of the parents from feeling that the text does not apply to their child.
All the medical information contained in this second edition of Childhood Brain & Spinal Cord Tumors is current as of 2013. As treatment is constantly evolving and improving, there will inevitably be changes. For example, the technology that supports surgery and radiation treatments continues to improve. Scientists are currently studying some new medications and genetically determined responses to specific drugs that may dramatically improve treatments. You will learn in this book how to discover the newest and most appropriate treatments for your child. However, this book should not be used as a substitute for professional medical care.
We have included four appendices for reference: blood tests and what they mean; resource organizations; books and websites; and a cancer survivor’s treatment record that should be filled out at the end of treatment. This personal summary of treatment can be used to educate all future healthcare providers about the types of treatment your child received and the follow-up schedule necessary to stay healthy.
How to use this book
While conducting research for this book, we were repeatedly told by parents to “write the truth.” Because the “truth” varies for each person, more than 100 parents, children with brain or spinal cord tumors, and their siblings share portions of their experiences. This book is full of these snapshots in time, some of which may be hard to read, especially by families of newly diagnosed children. Here are our suggestions for a positive way to use the information contained in this book:
- Read the last chapter first. Many children survive and it helps to read their stories.
- Consider reading only the sections that apply to the present or the immediate future. Even if your child’s prognosis indicates a high probability of cure, reading about recurrence or bereavement can be emotionally difficult.
- Realize that only a fraction of the problems that parents describe will affect your child. Every child is different; every child sails smoothly through some portions of treatment but encounters difficulties during others. The more you understand the variability of cancer experiences, the better you will be able to cope with your own situation, as well as be a good listener and helpful friend to other families you meet with differing diagnoses and circumstances.
- Take any concerns or questions that arise to your neuro-oncologist and/or nurse practitioner for answers. The more you learn, the better you can advocate for your child.
- Share this book with family and friends. Usually they desperately want to help and just don’t know how. This book not only explains the disease and treatment but also offers dozens of concrete suggestions for family and friends.
If you want to delve into any topic in greater depth, Appendix C, Books and Websites, is a good place to start. It contains a list of reputable websites and an extensive list of books for parents and children of all ages. Reading tastes are very individual, so if something suggested in the appendix is not helpful or upsets you, put it down. You will probably find something else on the list that is more appropriate for you.
Best wishes for a smooth journey through treatment and a bright future for your entire family.
This book is truly a collaborative effort: without the help of many, it would simply not exist. We give heartfelt thanks to our families and friends who supported us along the way. Special thanks to our editor, Sarah Farmer, for her excellent editorial skills as well as humor, patience, tact, and honesty when needed. Thanks to Alison Leake, who used her eagle eye to copyedit the book, despite her busy work schedule. She did a great job! Special thanks to Susan Jarmolowski for making the interior design, layout, and cover gorgeous. We so appreciate the help of Gigi McMillan who updated Appendix B and Patty Feist who sent in lots of suggestions for books to add to Appendix C. Henry Friedman, MD, graciously took time from his busy schedule to update his Foreword. Thank you! Special thanks also to George Jallo, MD, for his help with the scans used for illustrations. We deeply appreciate all of you for helping make this a comprehensive, up-to-date resource for families of children with brain and spinal cord tumors and those who love them.
We send many thanks and much appreciation to two co-authors of the first edition of this book—Maria Sansalone and Patsy Cullen. Maria gathered stories from her friends in the brain tumor community that captured so many of the experiences and emotions of each member of their family. And Patsy drew from her 30 years of experience caring for children with brain tumors, conducting research to improve outcomes, and teaching the next generation of caregivers.
Both editions of this book are true collaborations between families of children with brain and spinal cord tumors and medical professionals. Many well-known and respected members of the pediatric oncology community, members of national organizations, and parents carved time out of their busy schedules to review chapters, make invaluable suggestions, and catch errors. We especially appreciate the patient and thoughtful responses to our many emails and phone calls. Thank you: Jeffrey C. Allen, MD; Diane Barounis, MSW, LCSW; Roberta Calhoun, ACSW; Deb Civello, RN, MA, CPON; Cass Cooney, MSN, PNP; Jillann Demes, MSW, LSW; Geri Jo Duda, RN; Fred Epstein, MD; Henry Friedman, MD; Russ Geyer, MD; Sharon Grandinette, MS, Ed; Deneen Hesser, RN, BS, OCN; George Jallo, MD; Larry Kun, MD; Laurie D. Leigh, MA; Mary Lovely, PhD, RN; Maureen McCarthy, BSCCS, Child Life Specialist; Tobey J. MacDonald, MD; Paul McKay; Gigi McMillan; Al Musella, DPM; Rosanna Ricafort, MD; Elizabeth A. Seay; Yvonne Soghomonian, RN; Nancy J. Tarbell, MD; Kathy Warren, MD; Sheri White; and Jeanne Young, BA.
More than words can express, we are deeply grateful to the parents, children with brain and spinal cord tumors, their siblings, and others who generously opened their hearts and relived their pain while sharing their experiences with us. To all of you whose words form the heart and soul of the book, thank you: Kathleen A. Barry; Cynthia Baumann-Retalic, mom of Kevin; Kathleen Bell; Kathy Bucher; Nancy Bullard, mother of three incredible young women; Tonya M. Burwell; Ricky Carroll; Angie M. Cheeks; Patricia V. Christiansen, mom to John V. Christiansen; Deb Civello; Lisa M. Clark, Christopher’s mom; Mary Beth Collins; Maureen Colvin; Cheryl Coutts, proud mom of Morgan; Karen Covell, mother of two wonder boys, Christopher and Cameron; Grace Coville-McKenna; Aimee Dion Crisanti; Melissa and Andrew Croom; Renee Curkendall; Evan Darlington; Carol Dean, Mandy’s mom; Lucindy M. DeLuca; Wade Demmert, proud dad of Mandy; Cynthia Diaz; Laura Duty, mother of Benjamin Duty; Sharon Eaton, Super “T’s” mom; Sarah Farmer; Wes and Vicki Fleming; Tracy Flinders; Colette Gelman; Drew Head, father of Alissa; Cindy Herb and son Michael; Kellie Hicks; Shawn Honohan; Linda Horvat; Debbie Hoskin; Mary L. Hubbell; Margie Huhner, mom to Anna; George Hunter; Marcia Jacobs, angel Anjulie’s mommy; Jenny Jardine; Darlene Behrend Jones; Larry Junck, MD; Susan Junghans, mother of angel David; Carolyn, mother of Paul Kazakos; Jan Klooster, mother of Dan Steven; Kathy Knight; C.J. Korenek; Louise and John Lamp, parents of Victoria; Missy Layfield; Debbie Lentini; Aidan Leslie; Melanie Logan and son, Darren Klawinski; Rachel Lourie; Christina McCarter; Maureen A. McCarthy; Danielle McCauley; Gillian McGovern; Alannah, Susan, and Paul McKay; Gigi McMillan; Susan Milliken; Katy Moffitt, proud mom of angel Jessica Ann Moffitt; Berendina Norton; Sandra M. Norton; Lauren Ott, RN; Josie and Kylie Pace; MaryJo Palermo-Kirsch, Kevin’s momma; Stephanie Paul, proud mother of Derick Corey; Jane Peppler, mother of Ezra Farber; Diane Robinson Phillips; Robin and Emily Pierce; David Rank; Jim and Sally Reeves, parents of Jordan; Kris Riley, mom of Matt; Alison C. Roberto; Dona M. Ross; Ruth Sansalone; Carole-Lynn Saros; Kelly Saunders, mom to Hunter Goodon; Mindy Schwartz, Mikey’s mom; Elizabeth A. Seay; Lee D. Smolen; Carol J. Sorsdahl; Anne Spurgeon; Loice Swisher, mother of Victoria Middleton; Trish Telcik; Bob Thomas and Megan Thomas; Terra Trevor; Denise Turek, mom to Jen; Sheri White; Catherine Woodman; Janie, Megan’s Mom; Marcey, mom to Madison; Mark, father of Deli; Mark, loving husband of Janet; and those who wish to remain anonymous.
Thank you also to Nancy Keene and Honna Janes-Hodder for sharing their words. Some of the text for this book comes from their books for families of children with cancer: Childhood Leukemia: A Guide for Family, Friends, and Caregivers, 4th edition by Nancy Keene, and Childhood Cancer: A Parent’s Guide to Solid Tumor Cancers, 2nd edition by Honna Janes-Hodder and Nancy Keene.
Despite the inspiration and contributions of so many, any errors, omissions, misstatements, or flaws in the book are entirely our own.
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