THE SURVIVORS INTERVIEWED FOR THIS BOOK lead rich and fulfilling lives. To balance the challenges described in the text, we invited them to provide a glimpse of “the rest of the story.” With warmth and humor, they did so. We feel privileged to know them.
Luc is an 18-year-old high school senior who excels in music. He surrendered a football and lacrosse career when he was diagnosed, and rather than focus on loss and limitation, Luc turned to music and studied guitar and piano. He plans to pursue a career as a music teacher. He cannot be described as an average teen. Rather than recapturing the 3-year chunk that was carved from his teenage years, he moved forward. His friends tend to be older and spiritually based. His music teacher described him as a remarkably mature young man with what she calls a gift to claim a room of unruly students and turn chaos into common sense.
Shannon is now 9 years old and in third grade. She hit her “5-year” remission in June 1999. She enjoys music and doing crafts. Shannon has made top cookie seller 2 years in a row for Brownies and enjoys sleepovers.
Elizabeth is an 8-year-old who was diagnosed with Wilms tumor at the age of 3. She loves school and church. Her favorite activities are swimming, bike riding, and playing with her mom.
Marilyn is a 50ish woman who survived unilateral retinoblastoma at age 2. Due to genetic concerns, she adopted a daughter (now age 25) and has one grandson. Marilyn is a residential mortgage lender and a national trainer/speaker for the mortgage industry. In her spare time, she quilts, gardens, and enjoys cross-country skiing. Depth perception is still an issue, so she is still not brave enough to try downhill skiing.
Taylor is now a 9-year-old boy who had T-cell acute lymphoblastic leukemia (ALL). He is currently enjoying the challenges of fourth grade. His interests include computers, chess and all other board and card games, playing with his friends, teasing his brother and sister, sports, and just being a kid like the rest of his friends again.
Brenna is a 5-year-old diagnosed with acute lymphocytic leukemia in early 1998. She lives with her mom and dad, Denise and Jerry, two brothers, one sister, and her bird. She enjoys dancing and art. When she grows up, she wants to be a ballerina or a doctor—so her oncologist can retire.
Bobby is a 12-year survivor of ALL, now doing well after 6 years of treatment including a bone marrow transplant. He and his family recently bicycled 3,900 miles across the United States to visit and encourage other children fighting cancer and their families. He is now 20 years old, in his second year of college, co-founder of a small non-profit organization dedicated to supporting children fighting cancer, and engaged to be married.
Casey , 19, is a 6+ year survivor of osteogenic sarcoma in her right distal femur. Her obsession with returning to cheerleading led to an extraordinary physical recovery and she is now a first-year student at Smith College. She relieves an intense academic environment with diving for the school team and riding horses.
Gina is now a survivor of ALL for over 12 years. She is 15 and completing the eighth grade. She enjoys voice lessons, piano lessons, singing in the school choir, and being part of the technical crew for the school’s show choir. She is an excellent, hardworking student and is looking forward to driving a car soon.
Katy is a 6-year-old miracle child who continues to amaze her family daily in her recovery from her bone marrow transplant. She loves first grade, having friends sleep over, and playing “hospital.” She wants to be a nurse when she grows up.
Garrett is a 4-year-old survivor of acute myelomonocytic leukemia (AMMOL) and an unrelated cord blood transplant. He loves looking for alligators and dinosaurs on family camping trips. He and his 6-year-old brother, Shawn, want to be race car drivers when they grow up.
Sharon , a 13-year survivor of an astrocytoma, has worked for the past 5½ years as a research assistant in a laboratory. She and her husband were married 4 years ago, and she has just started business school in search of a master of business administration degree at Temple University.
Zackary loved dolphins, music, Nintendo and life. Erin and Nick live in Utah where they work with Candlelighters to enhance the lives of kids with cancer.
Rachel is an active second grader, learning to play tennis and the piano. She is very independent and self assured. Her teachers are continually amazed at this because of all she has been through!
Rima , age 45, was treated for Hodgkin’s disease in 1971. She is the child of a woman who died of Hodgkin’s disease in 1958. She has been teaching elementary school for 21 years and has a supportive husband and one lovely miraculous daughter. She loves to read, walk, garden, and take hot baths, though not at the same time!
Paige was diagnosed with neuroblastoma at age 4 in 1994. She is a 5-year survivor and a spunky kid who likes to sing, be a clown on stage, eat candy, and watch TV. Paige plays soccer and basketball, does well in school, and loves her sister and brother.
Heather , a very bright, creative, and vivacious 8-year-old, was diagnosed with stage IV neuroblastoma when she was 14 months old. As part of her treatment, Heather underwent a bone marrow transplant. Today, she enjoys swimming, acting, singing, dancing, and playing with her friends, family, and two small dogs. To know Heather is to love Heather!
Kyle is a bright, happy and fun-loving 9-year-old who was diagnosed with a medulloblastoma (brain tumor) at the age of 4. He is in the third grade and although it is a struggle for him in some areas, he is doing well. He likes to play on the computer, draw, ride his adapted bike, and go to grandma’s house, and he has always loved treehouses.
Elizabeth , a 32-year survivor of Hodgkin’s disease, has been a legal secretary and successful massage therapist. She lives with her husband and two adoring labradors and enjoys the challenges of being a hospice volunteer.
Trevor is now almost 7 years old and has been battling leukemia for nearly 3 years. He is a bouncing, beautiful first grader who loves art, math, football, all of his friends, and Pokémon.
Nicholas is a 7-year-old conqueror of ALL. He’s a serious first-grader and all-around family comedian. He enthusiastically collects and trades Pokémon cards, cheers for the Jacksonville Jaguars, and does gymnastics in his spare time. Nick’s favorite toy remains Woody and the gang from “Toy Story,” including Mr. Potato Head.
Lisa is a law student who hopes to pursue a career in child advocacy after graduation.
Alexander , 7 years old, was diagnosed with high risk acute ALL at the age of 2½ years. He is happy and doing very well in first grade. He is quite the social butterfly and is joyfully taking skating lessons and playing baseball and soccer. He loves making crafts with empty tissue boxes, paper towel and toilet paper rolls, string, and—much to his father’s chagrin—any Scotch tape that is in his Dad’s home office.
Susan is a 20-year survivor of Hodgkin’s disease. Recently, late effects from her cancer treatment caused her to stop working. She now researches survivorship issues, lives a simple life, and takes care of her health. She is a writer, an advocate for animal rights, and mother to five cats and dogs.
Joel , 18, is a student and athlete who is looking forward to beginning college after a year off for treatment. He was diagnosed with ALL at age 14 in 1995. He relapsed in 1999 and was still in treatment as of December 1999.
Chris is a 9-year-old who had a medulloblastoma at age 5. He is a fourth grader who is making rapid improvements in his reading and writing abilities. He is active in Cub Scouts and enjoys bowling, playing with his friends, and playing in the snow.
Jamie is a 10-year-old boy with an ever-present smile and a wicked sense of humor. He has taught our family to explore and enjoy life to the fullest. He is a true cancer warrior.
Kevin is a 15-year survivor of Hodgkin’s disease. Despite a recurrence in 1998, he and his wife live happily in Oklahoma with their three pet ferrets. Kevin has degrees in business and health care administration and is currently pursuing a degree in computer science. He enjoys reading, traveling, and keeping active in their church.
Jennifer , a 14-year non-Hodgkin’s lymphoma survivor, is a world traveler for the moment until she figures out what she wants to be. She enjoys exploring the world, time with family and friends, and helping others as much as she can.
Katie is 9 years old and a survivor of juvenile chronic myelogenous leukemia. She enjoys amusement parks, horses, cartoons and her guinea pig. She lives in Virginia with her parents and three brothers.
Linda is a 28-year survivor of Hodgkin’s disease. She is a child and adult psychoanalyst and works with survivors in her clinical practice. She also founded and runs the Long-Term Survivors internet discussion group. She lives, plays, and swims with her husband and standard poodle in sunny southern California.
Robby was diagnosed with high risk ALL at age 5½. He relapsed in his central nervous system at age 7½ and again 6 months later. He received an autologous bone marrow transplant at age 8½ and is now 4 years post-transplant and doing wonderfully. He attends a school for academically advanced students and is on honor roll. He enjoys video games, computer games, and talking on the phone to friends—a typical teen!
Jared is a very active and intelligent 10-year-old boy who has been past cancer for 8 years. His favorite sport is soccer. He is very sensitive to others’ pain and knows that the Lord has healed him.
Jeremy was diagnosed with Ewing’s sarcoma at age 11. He was diagnosed with secondary acute myelogenous leukemia (AML) at the age of 15. He is now a typical 17-year-old who works part-time in addition to being an “average” high school junior. He sleeps late on the weekends, has a messy room, and fights with his brothers. He has an infectious smile and is a wonderful reminder that our children are precious gifts from above.
Linda , a 23-year survivor of Hodgkin’s disease, lives with her husband and teenage daughter in Missouri. She enjoys sewing and writing.
Kenny has now been off therapy since January 1998. He attends pre-kindergarten in Georgia and is currently pursuing every Pokémon card available. He is full of life!
Ardeth is a 36-year-old former assistant librarian and minister’s wife who has been happily married for the past 12 years. She works for a local hospice agency and helps her husband as he pastors a local church. Ardeth’s hobbies are researching genealogy and family history, collecting angels, playing the flute, oil painting, reading, and spending time with her pets—two dogs and a talking parrot.
Yossi Chaim is an 11-year-old boy who had a bone marrow transplant at age 9. He enjoys playing Game Boy, Pokémon, reading, and drawing. He hopes to be a cartoonist when he grows up.
Coley is now a healthy 7-year-old, who has survived the hepatoblastoma she was diagnosed with at age 2. She lives happily in Florida and enjoys the first grade, playing Barbie with her sister Chrissy, and trying to ride horses with her sister Anna. She even enjoys playing “wrestling matches” with her brother Sean and adores her brother Jason. She is very loved and very happy.
Mark is a 23-year survivor of testicular cancer who lives in Los Angeles. He’s a mortgage professional and enjoys traveling, sporting events, and playing golf.
Brian is a 3½-year survivor of high-risk ALL. He is a happy 14-year-old high school freshman, who enjoys art, soccer and playing guitar. His brother Kevin was diagnosed with ALL at age 4. Now he is a busy 6-year-old, whose favorite subjects in first grade are art, PE, and lunch!
Terri is now 9 years old and 6 years out from diagnosis. Although her tumor has metastasized and she is diagnosed as terminal, she continues to battle on bravely and looks forward to being a vet when she grows up—by the grace of God.
Laurie , a 34-year-old neuroblastoma survivor, lives with her husband and children. She works in the medical communications field and is involved in a local bioethics committee and a national bioethics committee for pediatric oncology. In her spare time, she enjoys cooking, gardening, and activities with her family.
Steve , a 21-year survivor of osteosarcoma and an amputee, currently works as a health educator/counselor with cancer patients. Steve enjoys the many hobbies he has, such as exercising, fishing, and being outdoors. He volunteers as a counselor at a pediatric oncology camp. He feels blessed for all the wonderful friends and relationships he has had over the last 21 years.
Justin is an 11-year-old who was diagnosed at age 8 with a brain stem tumor. He has undergone radiation and is now doing well with very few symptoms of his disease. He is now in fifth grade. He enjoys playing his Nintendo 64. He lives in Washington.
Andrea is a 22-year-old two-time survivor. She finished her BA in 3½ years while receiving treatment. She plans on attending graduate school and hopes to one day get her Ph.D.
Shortly after the birth of her first son, Teresa began a career as a newscaster for both CBS and NBC affiliates. She now resides in her hometown of Indianapolis, where she is president and CEO of Teracom Media Group, a multimedia distributor of integrative health information. Teresa also is publisher of Healthy Living magazine, as well as the current host of the Healthy Living TV show and radio programs.
Clare is a 16-year-old survivor of rhabdomyosarcoma, which she was treated for at age 9. Now a junior in high school, she is doing well academically and plans to attend college. She enjoys playing the piano and clarinet, writing poetry, acting in high school musicals, listening to music, and spending time with her friends.
Carol , a 24-year survivor of Hodgkin’s disease, was diagnosed after the birth of her first child. She is now retired due to ill health. She lives with her husband in Kent, England, and has two grown-up children.
Matthew is a 6-year-old who survived a malignant brain tumor (medulloblastoma) and its treatment at the age of 2. He loves classic Disney cartoons, Disney Beanie babies and videos, cookies, and going to the mall to walk for physical therapy; which includes a visit to the Disney store.
Melissa was diagnosed with ALL at the age of 3. She is now 10 years old and is in the fourth grade. Her favorite activities are making crafts, learning to play the fiddle, and telling jokes and stories. She is looking forward to starting horseback riding lessons.
Matthew was diagnosed with stage III favorable histology Wilm’s tumor with some unknown malignant areas at age 1 and then relapsed at age 2½. He is now 5 years old and has been off treatment for 18 months and is doing exceptionally well. He loves Star Wars, Pokémon, playing with cars and Legos, and just in general running around and having fun.
Barb , a 9-year survivor of Hodgkin’s disease stage IIIB NS, is a medical office assistant who lives with her husband in British Columbia, Canada. She enjoys outdoor activities and treasures the quiet times with her husband.
James , a 19-year-old survivor of ALL, is a sophomore engineering student at the University of Colorado, Boulder. He enjoys flying remote control helicopters and planes, riding his mountain bike, and computers of all sorts and colors.
Julie is a 3-year survivor of Hodgkin’s disease, having been diagnosed just prior to her high school graduation. She is an art major in college specializing in graphic design. She particularly enjoys silk painting, weaving, quilting, and country music.
Nikhila was diagnosed with T-cell ALL when she was 9 years old. She is now 12 and enjoys art and writing stories and poems. Her passion is learning about and taking care of lizards!
Selah was 4½ when diagnosed with T-cell, high-risk, poor prognosis ALL. Treatment, including cranial irradiation, lasted 2 years, 2 months, and 2 days. Selah is now 13½, an honor student in junior high, and sees her doctors just once a year. No long term effects to date (unless excessive giggling is somehow related to leukemia!), and she is a joyful member of our family.
Eleven-year-old Oliver was first diagnosed with ALL at age 5 and underwent a bone marrow transplant age 8 after a relapse. He is a bright, funny child who loves his family, pets and friends, playing soccer and cricket, and even going to school!
Anne is a long-term (23-year) survivor of ALL. She is 28 years old, living with a college friend in a suburb of Philadelphia. She has a master’s degree in social work from the Catholic University of America and has been practicing social work for 6 years. She enjoys her job working with neighborhood organizations in Philadelphia to help families connect with the services they need. She has close family and friend relationships and is happy with her life.
Gib is a survivor of ALL—in remission for 11 years. Proud father of 21-month-old Lucas (wasn’t supposed to happen—so much for medical prescriptions). Gorgeous sweet wife. Attorney and advocate for childhood cancer survivors. Life is good!
Ann is a 5-year survivor of non-Hodgkin’s lymphoma who lives in North Carolina with her husband. She is a computer programmer and enjoys cake decorating, gardening, and cycling in her spare time.
Preston is a 23-year-old who was diagnosed with leukemia (ALL) at age 10. He was successfully treated with chemotherapy, graduated from college, and now works for a large brokerage house in New Jersey. He enjoys sports and keeps fit by running each day, playing squash, and traveling around the country to ski with his friends.
JaNette is a 12-year-old who had a bone marrow transplant for AML when she was 6. A few chronic medical problems don’t keep her from enjoying life—school, choir, friends, and youth activities!
Naomi , a 12-year survivor of AML (M5), is currently studying biology at the University of Ottawa in Canada. She is hoping to pursue a career in medicine to give back to the world of science that enabled her to survive her cancer. She spends her summers working as a counselor at Camp Trillium—a camp for children with cancer.
Carol , a 22-year survivor of Hodgkin’s disease, lives with her husband Marv and a newly adopted kitten Roxy and their dog Stoney. She enjoys listening to music, reading, daily walks, and riding on the back of their Harley Sportster.
Dottie , a long-term Wilms tumor survivor, is a registered nurse and mother of three boys, two of whom are also Wilms survivors. She lives in Florida and enjoys the beach along with family days at the ball field.
Tim , who was diagnosed with ALL at age 8 and relapsed at age 12, is now a high school sophomore. He is taking classes such as pre-calculus and Latin. He enjoys computers—both games and networking. He also enjoys science fiction and fantasy reading, gulping down 700-page books with ease.
Lisa , now 16 and driving (!), was diagnosed with AML leukemia at 12 years, relapsed with bone marrow transplant at 13 years, and graduated eighth grade valedictorian. She continues to be a great pianist and excels in the band and choir programs at high school.
Kimbra , diagnosed with Hodgkin’s disease at age 15, is now a 26-year-old librarian and writer. She loves reading, writing, and volunteering with children, and she recently married her pediatric oncology camp sweetheart, Darren, who was diagnosed with optic nerve germinoma at age 16. Her research interests include children’s and young adult literature, clinical biomedical information for patients and clinicians, the Crusades, medieval and nineteenth-century medicine, and most important, long-term survivor issues.
Jennifer is 26 years old and works for Cancer Services of Allen County in Fort Wayne, IN. She likes to read, do crossword puzzles, jigsaw puzzles, and cross stitch.
Laura , a 34-year-old ALL survivor, lives in Washington with her husband and two children. She enjoys volunteering at a camp for children with cancer and a teen support group.
Tom , a 29-year-old survivor of ALL, is a dedicated volunteer who believes that his experience with cancer has made him a stronger and more caring person. Because he is sensitive to the needs of children and young adults with cancer, he devotes his time helping them navigate the path to emotional and social recovery. If given the opportunity, he would not trade his experience with cancer for a “normal” life.
Rachel is an active, happy 10-year-old survivor of ALL. She enjoys her friends and family. She once declared she was “giving up cancer for Lent.”
Table of ContentsAll Guides
- 1. Survivorship
- 2. Emotions
- 3. Relationships
- 4. Navigating the System
- 5. Staying Healthy
- 6. Diseases
- 7. Fatigue
- 8. Brain and Nerves
- 9. Hormone-Producing Glands
- 10. Eyes and Ears
- 11. Head and Neck
- 12. Heart and Blood Vessels
- 13. Lungs
- 14. Kidneys, Bladder, and Genitals
- 15. Liver, Stomach, and Intestines
- 16. Immune System
- 17. Muscles and Bones
- 18. Skin, Breasts, and Hair
- 19. Second Cancers
- 20. Homage
- Appendix A. Survivor Sketches
- Appendix B. Resources
- Appendix C. References
- Appendix D. About the Authors
- Appendix E. Childhood Cancer Guides (TM)