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 Jarmolowki for making the interior design and layout look great. Michele Keen of Creative Freedom designed a gorgeous cover. Garrett Brodeur, MD, graciously took time from his busy schedule to update his Foreword from the second edition. Thank you! We deeply appreciate all of you for helping make this a comprehensive, up-to-date resource for families of children with solid tumors and those who love them.
We send many thanks and much appreciation to the co-author of the first two editions of this book—Honna Janes-Hodder. Honna gathered stories from her friends in the childhood cancer community that captured so many of the experiences and emotions of each member of their family.
We also are grateful for generous support from the O’Reilly Foundation, Genentech, and other donors who wish to remain anonymous for providing funding to support publication of this book.
All three editions of this book are true collaborations between families of children with solid 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: Clarke P. Anderson, MD; Peter C. Adamson, MD; D. M. Bass, MD; David Beele, LSW; Jean B. Belasco, MD; Kristin Bradley, MD; Garrett Brodeur, MD; Nancy J. Bunin, MD; Stan Calderwood, MD; William Carroll, MD; D. R. Chaulk, MD; Susan Cohn, MD; Lynne Conlon, PhD; Max Coppes, MD, PhD; Ruth Daller, CRNP; Kenneth DeSantes, MD; Connie DiDomenico, CRNP; Jeffrey S. Dome, MD, PhD; Debra Ethier, RTT; Christina Falcone, Financial Counselor; Daniel Fiduccia; Debra L. Friedman, MD; Joel W. Goldwein, MD; Richard G. Gorlick, MD; Mark Greenberg, MD; Stephan Grupp, MD, PhD; Jack Hand, MD; Bruce Himelstein, MD; Wendy Hobbie, RN, MSN, PNT; JoAnne Holdt, MA; Lawrence F. Jardine, MD; F. Leonard Johnson, MD; Anne E. Kazak, PhD; Beverly J. Lange, MD; Ann-Marie Leahey, MD; Laurie D. Leigh, MA; Susan J. Leclair, MS, CLS (NCA); John M. Maris, MD; Anna T. Meadows, MD; Grace Monaco, JD; Linn Murphree, MD; Ann Newman, RN; Mark Newman, MD; Cal Peddle, BSc, PhD; Greg Peddle, PhD; C. Patrick Reynolds, MD, PhD; Robert C. Seeger, MD; Hiro Shimada, MD; Susan Shurin, MD; Steven Simms, PhD; Douglas Strother, MD; Heidi Suni, MSW; Susan DiTaranto, RN, BSN; Ellen Tracy, RN; David R. Ungar, MD; Judith G. Villablanca, MD; Daniel von Allmen, MD; Leonard H. Wexler, MD; and Richard B. Womer, MD.
More than words can express, we are deeply grateful to the parents, children with cancer, and their siblings, who generously opened their hearts while sharing their experiences with us. To all of you whose words form the heart and soul of this book, thank you: Brenda Andrews; Robin B.; LeeAnn Barnard; Sheila Batten; Terry Beck; Theresa Beech; Anne Beecher, mom to Charlie and Max; Mike and Kathy Blaker, parents of Adam; Patrice Boyle and Sean Boyle; Ted and Michele Bozarth; Jocelyne Brent; Sue Brooks; Nancy and Ernie Bullard; the Burge family; Noreen Burgess, Coley’s mom; Dottie Bradford Buttafogo; Ricky C. (Garrett’s dad); Nicole Canfield, Wyatt’s mommy; Christopher and Angela Carson; Nicole Carter, mother of the brave Mary Tipton Carter; Jennifer Cartwright, mom to Aaron and Zach; Alicia Cauley; Naomi Chesler; Jennifer Click; Cathy and Tim Cooley; Cynthia Diaz; Corinne Eiriksson, Jamshid’s mum; Allison E. Ellis; E. Engelmann; Dana Erickson; Mel Erickson; Kellie Espinoza; Donna Evans, Cienna’s mommy; Sarah Farmer; Art Farro; Rene Fernandez; Kate Foley, mom to Cameron, 4/25/94 to 5/31/98; Tamra Lynn Sparling Fountaine; Alana Freedman; Jenny Gardner; Sandra Gaynor; Judy Gelber; Shirley Enebrad Geller; Roxie Glaze; Lynn Goering; Sharon Gould, Leah Wicklund, and her awesome big brother Jacob Wicklund; Jamie Griffith, mom to Ellie; Kris H.; Lisa Hall; Erin Hall; Daphne Hardcastle; Jessica Hargin; Jodi and Cameron (Super Cam) Harris; Linda Harrison; Susan Harvey; Kathryn G. Havemann; Kristen Hebberth, proud mama to Super Jayden; Nikki Henning, proud mommy of sweet Tala; Douglas L. Herstrom; Heidi Hicks, proud mommy of our brave brown-eyed beauty, Brinley Hicks; Connie Higbee-Jones; David Hodder; Ruth Hoffman; Chris Hurley; David and Esther Hurst; Lorie Jager; the Jordan family; Erin A. Jordan; Fr. Joseph; Peggy Kaiser; Susan Kalika; Joyce Kammerman; Beth Karanicola; Winnie Kittiko; Terri Kluey; Lisa Korenko; Karen L. Krajewski; Kori Lamb, Tanner’s mom; Missy Layfield; Bob Ledner; Susanne Lehrman; Elinor Lemky; the Peter G. Lewis Family; Pam Lim; Gail and John Lindekugel, parents of Levi; Maryanne Macaluso; Julie Macedo; Cyndi and Andrew MacKinlay; Alice Mauck, mom to TJ; Dierdre McCarthy-King; Sara McDonnall; Gigi McMillan; Keeley Mendez; Lori Michelle Miller; Marilyn Brodeur Morin; Wendy Mitchell; Holly Moisa; Amanda Moodie; Jean Morris; Leslee Morris; Laura Myer; Carolyn Nordberg; M. Clare Paris; Jeff Pasowicz; Jennifer Peterson; Donna Phelps; Laura Randall, RN, mother of Matthew; Jim and Vickie Reilly; Mary Riecke; Lynne A. Rief; Amanda Riel; Wendy Rigden McCurley; Jennifer E. Rohloff; Kevin Rufener, Charlotte’s father; Steve and Shirlene S.; Maria Sansalone; Heidi Schoenecker; Carole Schuette; Angela Schuldies; Mark W. Schumann; Sharon Schuster; Janice Scott; Susan Sennett; Erin Shanahan; Lynnette Shanahan; Lori Shipman; Lorrie Simonetti; Cathi Smith; Carl and Diane Snedeker; Anne Spurgeon; Michaela Stokes-Noonan; Jenni Swink; Leeann T.; Iris Taylor; T. Terwilliger; Megan Thomas; Wendy Thompson; Marie Thomsen; Gigi N. Thorsen; Robyn Thurber; Lisa Tignor; Sarah, Tim, and John Allen Tinkel; Michael and Cheryl Tobias; Shoshana Tobias; Laura Todd-Pierce; Michele Trieb; Cathy Tschumy; Susan E. Tuccio; Kathleen Tucker; Bridget Tuxen; Dina Van Yperen; Dawn Veltri; Melissa L. Walhovd; Annie Walls; Ralene Walls; Kim Warren; Sheri White; Kimbra Suzanne Wilder; Jean Wilkerson; Catherine Woodman, the Yantis Family; Lise Yasui; Cheryl Zeichner; Ellen Zimmerman; Carla, mom of Nelson; and those who wish to remain anonymous.
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. Bone Sarcomas
- 3. Liver Cancers
- 4. Neuroblastoma
- 5. Retinoblastoma
- 6. Soft Tissue Sarcomas
- 7. Kidney Tumors
- 8. Telling Your Child and Others
- 9. Choosing a Treatment
- 10. Coping with Procedures
- 11. Forming a Partnership with the Medical Team
- 12. Hospitalization
- 13. Venous Catheters
- 14. Surgery
- 15. Chemotherapy
- 16. Common Side Effects of Treatment
- 17. Radiation Therapy
- 18. Stem Cell Transplantation
- 19. Siblings
- 20. Family and Friends
- 21. Communication and Behavior
- 22. School
- 23. Sources of Support
- 24. Nutrition
- 25. Medical and Financial Record-keeping
- 26. End of Treatment and Beyond
- 27. Recurrence
- 28. Death and Bereavement
- Appendix A. Blood Tests and What They Mean
- Appendix B. Resource Organizations
- Appendix C. Books, Websites, and Support Groups