BOOKS BY MEMBERS
“My name is Carson Leslie, and I have been battling brain and spine cancer for the past three years. I love sports, babies and Mexican food. I have written a book to give a voice to the teenagers and children who have battled cancer but are unable to express how such an illness affects their personal, social, physical and emotional life. I want others to understand how to be a better friend to someone he/she knows that has a life threatening disease. Even though every day of my life is a battle, I have learned that God is always there to lift me up, and I live each day as if it were the Day of Judgement.
I believe my story will give readers a new perspective on the importance of how words and/or actions affect those around them. I wish to make a difference, and I know others my age want to do the same. Maybe after they read my book they will discover how to live the struggle…”” – Carson Leslie
Carson kept a journal from his earliest days in school, so when diagnosed with brain cancer at 14 years old, keeping a journal came naturally. Carry Me is Carson’s memoir of his 3+year valiant battle for life. At second printing, his literary agent requested that his mom write an epilogue. Annette shares a window into life after Carson’s death. Carson’s last whispered wish, was that his brain be studied to help the next kid diagnosed with cancer.
This comprehensive parent guide covers medulloblastoma, astrocytoma, primitive neuroectodermal tumors (PNET), brainstem gliomas, hypothalamic gliomas, atrypical teratoid/rhabdoid tumor (AT/RT), ependymomas, craniopharyngiomas, germ cell tumors, and choroid plexis tumors. It contains essential information that families and friends need during this difficult time, including how to: understand the diagnosis; get excellent treatment; cope with side effects; find emotional support; and identify helpful resources.
Woven throughout the text are true stories—practical, poignant, moving, funny—from more than 120 children with brain or spinal cord tumors, their siblings, and their parents. The text was reviewed by renowned experts in pediatric oncology, and the foreword was written by Henry Friedman, MD, Deputy Director of the Brain Tumor Center at Duke, professor of neuro-oncology, and professor of pediatrics.
See Nancy Keene’s bio for Childhood Leukemia, (previous books).
Tania Shiminski-Maher received her BSN and MS in pediatric primary care from Columbia University and holds an academic appointment to the faculty of Columbia University School of Nursing. For the past 30 years, she has worked as a pediatric nurse practitioner in pediatric neurosurgery and pediatric neuro-oncology and has published extensively in the areas of pediatric brain tumors, hydrocephalus, and multidisciplinary team communication. She has been a member of the Children’s Cancer Group (CCG) and Children’s Oncology Group (COG) for the past 25 years.
Catherine Woodman received her BA in biology and her MD from Brown University. She has been on the faculty at the University of Iowa in the departments of psychiatry and family medicine for more than 20 years. She has served as a member of COG for 10 years and is on its Patient Advocacy Committee, Ethics Steering Committee, and Central Nervous System Tumors Steering Committee. In addition, Dr. Woodman served on the National Cancer Institute’s Pediatric Central Institutional Review Board for 6 years. Her young adult son is a survivor of medulloblastoma.
More than 460,000 children, teens, and adults in the United States are survivors of childhood cancer. The surgery, radiation, chemotherapy, and stem cell transplants used to cure children can affect growing bodies and developing minds. If survivors know of these potential problems, they can take steps to identify, cope with, or treat them early if they do develop. Childhood Cancer Survivors charts the territory for survivors by providing helpful information about:
Medical late effects;Emotions; Follow-up care
Staying healthy; Jobs and insurance
Woven throughout the text are true stories—practical, poignant, moving, funny—from more than 100 survivors of childhood cancer.
See Nancy Keene’s bio for Childhood Leukemia, (previous books).
Wendy Hobbie, RN, MSN, CRNP is Associate Director of the Cancer Survivorship Program at Children’s Hospital of Philadelphia (CHOP), the first comprehensive follow-up clinic in the United States. In addition to co-authoring three editions of Childhood Cancer Survivors, Wendy is one of the editors and chapter authors of the textbook for professionals, Survivors of Childhood Cancer: Assessment and Management (now in its third edition). She has published numerous articles in peer-reviewed journals on topics such as the late effects of treatment for childhood cancer, the role of the nurse practitioner in follow-up care, and risk taking and decision making by survivors of childhood cancer. For 30 years, she has empowered survivors with the knowledge to advocate for themselves in the healthcare system and society.
Kathy Ruccione, PhD, MPH, RN was Co-Director of the HOPE (Hematology-Oncology Psychosocial and Education) Program in the Children’s Center for Cancer and Blood Diseases at Children’s Hospital Los Angeles (CHLA) for many years. Kathy established the CHLA LIFE Program along with its annual Survivor’s Day celebrations and survivor scholarship program. Kathy is one of the editors and chapter authors of the textbook for professionals, Survivors of Childhood Cancer: Assessment and Management (now in its third edition). She has published and lectured extensively on topics such as transitions in care, survivorship needs, and the role of nurses in late effects evaluation.
Each year more than 6,000 children and teens in the United States are diagnosed with a solid tumor (e.g., kidney tumor, liver tumor, neuroblastoma, retinoblastoma, or sarcoma). This newly updated edition contains essential information families need from diagnosis through survivorship. It includes descriptions of the newest treatments, such as computer-assisted surgery, tandem stem cell transplants, and targeted therapies as well as practical advice about how to cope with diagnosis, medical procedures, hospitalization, school, and finances.
Woven throughout the text are true stories—practical, poignant, moving, funny—from more than 150 children with solid tumors, their siblings, and their parents. The text was reviewed by renowned experts in pediatric oncology, and the foreword was written by Garrett Brodeur, MD, Co-director of the Division of Oncology, Director of the Center for Childhood Cancer Research, and Director of the Hereditary Cancer Predisposition Program, Children’s Hospital of Philadelphia.
See Nancy Keene’s bio for Childhood Leukemia book, (above). Anne Spurgeon, trained as a historian at the University of Wisconsin, is the parent of a long-term survivor of rhabdomyosarcoma, a soft tissue sarcoma. For more than 15 years, she served as the executive director of the Badger Childhood Cancer Network in Madison, Wisconsin. Its mission is to educate, support, serve, and advocate for children with cancer, their families, survivors of childhood cancer, and the professionals who care for them. Anne enjoys having adventures with her three young adult children; kayaking the beautiful lakes of Wisconsin; reading history, anthropology, and science; and making and drinking craft beer.
This comprehensive guide covers acute lymphoblastic leukemia (ALL), acute myeloid leukemia (AML), chronic myelogenous leukemia (CML), and juvenile myelomonocytic leukemia (JMML). It contains essential information that families and friends need after diagnosis, including how to: understand the diagnosis; get excellent treatment; cope with side effects; find emotional support; identify helpful resources.
After diagnosis, families have a huge need for accurate information and a steep learning curve. To help them cope, our book contains easy-to-understand text that has been reviewed by distinguished experts in childhood cancer. Woven throughout the text are true stories—practical, poignant, moving, funny—from more than 170 children with leukemia, their siblings, and their parents.
Nancy Keene is the mother of a long-term survivor of high-risk ALL. A well-known writer and advocate for children with cancer, she has written many books about childhood cancer. Her work has appeared in Reader’s Digest, Journal of the American Medical Association, Exceptional Parent, and Coping Magazine. She was the first chair of the Children’s Cancer Group (CCG), Patient Advocacy Committee (PAC), and the first chair of the PAC of the Children’s Oncology Group (COG).
Carolyn’s life changed the moment she heard the words, “You have leukemia.” This is
Carolyn’s story of being diagnosed with cancer as a teenager, surviving treatment and
then navigating life afterwards. She survived a major medical mistake, experienced
miracles, discovered the healing power of dolphins, lost friends, fumbled her way
through relationships, and overcame depression that came later in life.
Her story will make readers laugh, cry and feel inspired. It will help cancer patients
realize they are not alone. Healthcare workers will gain a deeper understanding on how
to work with children and young adults diagnosed with a life-threatening illness. Family
and friends will understand the importance of their role in their loved one’s journey. All
readers will discover how important faith and hope truly are, especially when it seems
there is nothing else.
Carolyn was diagnosed with Acute Lymphocytic Leukemia in 1994, five days before her
14th birthday. Carolyn earned her bachelor’s in zoology from The Ohio State University
and her master’s in recreational therapy from The University of Toledo. Carolyn is a
dual certified recreational therapist/child life specialist and has worked with pediatric
cancer patients in a hospital, outpatient clinic, and in the camp setting. Carolyn has
always been a strong advocate for childhood cancer survivors, has volunteered with
various cancer organizations, and presented at conferences on the needs of childhood
cancer patients. Carolyn self-published her memoir, Faith, Hope and Cancer: The
Journey of a Childhood Cancer Survivor, with a goal to share her story of what it was
like to grow up as a childhood cancer survivor. Carolyn wants to make sure future
survivors don’t have to go through what she experienced.
Gabriella means “God is my strength.” Always unafraid, Gabriella Torres was so brave and daring in all she ever did. She was tiny in stature but her presence stood tall. “Baby G.” as she was known to her friends and family, was a born leader and always acted “like a boss.” This little bossy pants was known for her strength and her beautiful smile which could light up a room. Gabriella was diagnosed with Diffuse Intrinsic Pontine Glioma, or DIPG, in March, 2015. DIPG is an aggressive and inoperable brain tumor which primarily affects children between the ages of 5 and 10. Unlike any other pediatric cancers, there has been little progress in improving treatment and cures for DIPG.
Gabriella was diagnosed with Diffuse Intrinsic Pontine Glioma, or DIPG, in March, 2015. DIPG is an aggressive and inoperable brain tumor which primarily affects children between the ages of 5 and 10. Unlike any other pediatric cancers, there has been little progress in improving treatment and cures for DIPG.
Melinda Marchiano first felt an eerie weakness on a family trip to Yosemite National Park and, after doctors found a rock hard lump in her chest, received the devastating diagnosis of Hodgkin lymphoma. Melinda shares the ensuing battle of her young life with eloquence, humor, and wisdom beyond her years. As she struggles through treatment and fights to continue dancing–her greatest passion– Melinda recounts the events of her illness: turbulent emotions, the never-ending support of her family, and growing faith in God through operations, chemotherapy, radiation, drug reactions, an eating disorder, and more.
Whether cancer has touched their lives or not, readers will be inspired by Melinda’s complete reliance on God to get her through the terrifying ordeal. The abandonment of self-pity and remarkable tenacity displayed by the spirited young Melinda make this survivor’s tale a truly unforgettable experience.
Melinda Marchiano graduated from Pepperdine University with a Creative Writing degree and is currently Director of their dance company,Dance in Flight. Melinda regularly brings her message of hope to others as an inspirational speaker through keynote addresses, small groups, and special speaker events. She traveled over 10,000 miles, through 31 states, and visited 21 children’s hospitals to bring hope to children with cancer. Melinda hosted the powerful childhood cancer documentary, The Truth 365. Her book, Grace: A Child’s Intimate Journey Through Cancer and Recovery, received the Benjamin Franklin Best First Book Award from the Independent Book Publishers Association.
Meet eight-year old Connor Cruse as he battles childhood cancer. Find out how he and his family found courage, peace, strength and joy along the way. Join Team Connor and learn what you can do to help other kids, like Connor, fight for the cure to childhood cancer. Teamconnor.org
Joy and Tait Cruse are the proud parents of Mackenzie, Carson, Mason, and Connor (who now resides in Heaven) and recently adopted Tyler and Emma. Throughout Connor’s four-year battle with Neuroblastoma, Joy kept a Caring Bridge journal which served as the inspiration for this book. Her corresponding blog, “Joy’s Journal” continues to be followed by thousands of people throughout the world. Joy and Tait are the founders of Team Connor, a 501 c-3 which raises money to support childhood cancer research. To learn more about Connor Cruse, Neuroblastoma, or Team Connor, please visit www.teamconnor.org
Our differences are what make us special.
Hope, a young cancer fighter, explores the feelings associated with losing her hair. Her family members comfort her throughout the journey as her own personal cheerleaders. Hope and her mama lean on each other as support
Award winning Philanthropist, Alison Hornung, along with Illustrator Kelly Mengarelli, has created a
Hope, a young cancer fighter, is going to shave her head today. She seeks out her mama to talk about her feelings and explore the emotions of losing her hair. Her family members encourage Hope to find the beauty in her differences. Is hair really all that matters in finding our true beauty?
Award winning philanthropist, Alison Hornung, and illustrator Kelly Mengarelli, bring us a heartwarming tale of bravery and community through “Hope has no Hair.”
Having been a childhood cancer advocate since the age of twelve, Ali Hornung understands the importance of helping children find the beauty in their differences.
Ella came into Ali’s life when she was in elementary school. Later, when Ali was in high school the two became close friends, fondly calling each other “Big Sis” and “Little Sis.” Ella inspired Ali’s passion for helping children battling cancer. After Ella’s passing Ali founded Glimmer of Hope Foundation.
For five years, Joy and Tait Cruse walked closely with God while their four-year-old son, Connor, battled stage-IV cancer. Throughout this time, their primary focus was to navigate through the toughest battle of their lives without losing their hope in Christ. Hope Transformed offers a simple guide in devotional/self-help format for readers to work through their own battles, while garnering strength from God. Many authors offer hope for readers during the battle. Hope Transformed also speaks to readers who, by not having their desires realized, feel defeated and lost. In the final chapters of the book, they use their post-battle wisdom to answer the compelling question, “Where do you go when God says ‘no’?” The focus of this book is not about the loss of Connor. Connor’s life was the stimulus to finding faith and hope in their battle and their loss. At first, their hope was in Connor’s healing, but ultimately their hope was found in Christ.
Joy and Tait Cruse are the proud parents of Mackenzie, Carson, Mason, and Connor (who now resides in Heaven) and recently adopted Tyler and Emma. Throughout Connor’s four-year battle with Neuroblastoma, Joy kept a Caring Bridge journal which served as the inspiration for this book. Her corresponding blog, “Joy’s Journal” continues to be followed by thousands of people throughout the world. Joy and Tait are the founders of Team Connor, a 501 c-3 which raises money to support childhood cancer research. To learn more about Connor Cruse, Neuroblastoma, or Team Connor, please visit www.teamconnor.org
Osteosarcoma: From our Families to yours is a handbook designed to share experiences and thoughts on osteosarcoma from those who have been there. It is full of information shared by osteosarcoma families, edited by leading medical professionals.
En Español: Osteosarcoma: De nuestras familias a la suya es un manual diseñado para compartir experiencias y pensamientos sobre el osteosarcoma de quienes han estado allí. Esta lleno de información compartida por familias de osteosarcoma, editada por destacados profesionales médicos.
Available in English, Spanish and Mandarin.
When Kylie was diagnosed with cancer in April of 2014, her father believed that she would be completely healed and become a living testimony to God’s faithfulness and goodness. That is not the story that God wrote. A writer and blogger, Mark began posting about his struggles of heart and faith with a unique ability to mix humor and heartache. His genuine and often raw style seemed to resonate with many hurting people and his words were shared on many platforms.
Upon Kylie’s death in February 2015, he began a journey to find purpose among the ruins heaped on him, his family, and his faith – documenting both progress and setbacks. This book is a compilation of blog posts and journal entries that allows you to walk alongside him for this season. It will bring both smiles and tears. You will feel his hope and faith while he faces the struggle, endures the pain of devastating loss, then embarks on a desperate search for meaning, while always: Missing Kylie.
Mark joined CURE in 2016 after the loss of his youngest daughter, Kylie, to Ewing sarcoma. Mark’s career was in sales until his family entered the world of childhood cancer in 2014. He is the author of five books, the most important being Missing Kylie: A Father’s Search for Meaning in Tragedy. Kylie’s final instruction for him was to find a cure so other children don’t have to suffer as she did.
Mark is CURE’s Chief Storyteller who creates content for the website, social media, newsletters,
On July 6, 2008, when author Dena Sherwood first heard the devastating words, “Your son has neuroblastoma,” she never imagined that those words would later become a blessing to so many.
Dena prayerfully fought alongside her son, for three and a half years, to give him the best chance of beating the disease. A year after diagnosis, with God’s guidance, Dena founded Arms Wide Open Childhood Cancer Foundation to fund less toxic treatments for children with cancer and to bring hope to other families fighting the battle. Her son underwent chemotherapy, radiation, four major surgeries, immunotherapy, and a phase one vaccine trial and was later declared NED (No Evidence of Disease). From living in fear to living by faith No Retreat, No Surrender chronicles how one family’s faith in the Lord has brought hope and help to so many.
In July of 2008, Dena Sherwood’s 13-month-old son Billy, Jr. was diagnosed with Stage IV neuroblastoma, a very aggressive cancer of the sympathetic nervous system. From that moment Dena has been working tirelessly to help all children diagnosed with cancer and their families. In August of 2009, she and her husband Billy, Sr. founded the Arms Wide Open Childhood Cancer Foundation and began funding research and supporting families. In 2012, she co-founded The Truth 365 campaign as a way to give children with cancer a voice.
Since its inception, Arms Wide Open has funded more than 60 research grants around the country, some of which have led to life-saving trials. Dena lives in Marlboro, New Jersey with her three greatest blessings, her amazing husband and two children; Sydney and Billy, Jr. Billy, Jr. is now a two-time cancer survivor and an extreme lover of life!
When 14-year-old Cole Davis is diagnosed with leukemia, he and his circle of family and friends are all thrust into the long, difficult journey of pediatric cancer. Uniquely written from the perspective of both mother and son, this story details the battles of a teenager fighting the traumatic illness. It gives the reader a peak inside to gain understanding and insight into the plight cancer families endure every day. Laura Davis touches on the harshness of being a mom of a teen boy whose life has been threatened, the trouble of drug shortages, and the need for support and encouragement that all parents of childhood cancer patients share. Cole sheds light on the challenges teens face in a children’s hospital where furniture is built for small children and most of the programs and events are child-like. Not yet an adult, but no longer a child, teens with cancer are an often overlooked, underserved community in oncology.
Laura and Cole Davis are a mother and son who want to give back to those who helped them on their journey, share their experience for others on the journey now or in the future, and advocate for awareness of the battles pediatric cancer families face each day. Laura is a school counselor and higher education professional who uses writing as her outlet. Cole is a seventeen year old high school senior who is preparing for college. The live in Pennsylvania with their family and three dogs.
In Paint Your Hair Blue, Sue Matthews takes you through the heartwarming tale of heroic courage and devastating blows that characterized her daughter Taylor’s odyssey through the underfunded world of pediatric cancer. This book serves in equal portions as an inspiring tale of the power of love and determination, and a cautionary tale of the need for parents and all caregivers to be their own advocates. It will empower you, no matter what your circumstance, to take control of your own destiny.
Most of us will be touched by cancer in some way during our lifetimes. The reader will discover how Taylor and her family learned to balance the necessity of her continuous medical treatments with the need for her to be a kid and live as normally as possible. You will gather dozens of tips and pointers, gleaned by trial and error, about navigating the maze of pediatric oncology through the lens of a layperson and better understand how to face fears with strength, fortitude and confidence while living life to the fullest. Sue and her sister Andrea will make you a better warrior in the war on cancer with this story of survival, where love transcends all and where every moment is a celebration of life.
Sue Matthews is President of the Taylor Matthews Foundation, a tay-bandz organization, which is a 501 C-3, founded by her daughter Taylor, who passed from pediatric cancer at age 16. Sue is a nationally recognized advocate for pediatric cancer. TMF is at the forefront of new initiatives in awareness and continues to fund significant efforts in medical research at leading medical centers.
Andrea Cohane is a Board Member, advocate and advisor of TMF.. Andrea holds a B.S. in Economics from Cornell University and a Juris Doctorate from Fordham University School of Law. She was a business litigator at Clifford Chance, LLP in New York City and practiced at Womble, Carlyle, Sandridge & Rice in Charlotte, North Carolina.
Praying for Emily: The Faith, Science, and Miracles that Saved Our Daughter is the remarkable true story of Emily Whitehead, the first child in the world to receive CAR-T cell therapy for leukemia. Learn how Emily became the first pediatric patient to receive this therapy and how her family’s unwillingness to give up hope led them to this life saving treatment. CAR-T cell therapy is now used widely throughout the world to treat some types of cancers and has saved hundreds of lives.
The Whiteheads are co-founders of the Emily Whitehead Foundation, which raises funds and awareness for pediatric cancer research. The Whitehead Family travels worldwide as keynote speakers to inspire others and advocate for research funding to develop less toxic childhood cancer treatments. Tom, Kari, and Emily Whitehead currently live in Central Pennsylvania with their chihuahua Luna.
Princess Marygold is the world’s very first princess who is also a childhood cancer survivor. Along with her best friend, Peppermint the Pig, Marygold works very hard to help kids with cancer find joy and realize that there is a purpose in their lives.
Leia T. Hunt is a two-time childhood cancer survivor and founder of Leia’s Kids Foundation. Leia was diagnosed with Retinoblastoma, a rare form of eye cancer when she was two years old. Leia founded Leia’s Kids, a 501(c)3 nonprofit organization at the age of 18, while a senior in high school. The mission of Leia’s Kids is to provide hope and support to children and their families battling childhood cancer. Leia recently began her first year as a first grade teacher.
The Dot Method is an interactive children’s workbook that guides adults in helping to teach kids about cancer. The Dot Method is for children impacted by any cancer relationship including themself, a sibling, or another friend or relative.
Using simple visuals, honest language, and a workbook format, The Dot Method helps untangle medical jargon and unfamiliar scenarios and present them in a way that makes sense to children and young adults. The workbook allows for different types of cancers, treatments, and outcomes to be expressed.
The workbook written by a dual-certified child life specialist and licensed clinical professional counselor includes: a how to guide for caregivers and a glossary of child-friendly definitions of cancer terms. It teaches about cancer cells, treatment, side effects, as well as helps children identify feelings, their support system, and coping strategies.
Kelsey Mora is a dual certified child life specialist and licensed clinical professional counselor practicing in the Chicagoland area and available nationwide for consultation. Ms. Mora is specifically trained not only to support children and adolescents individually, but also to guide caregivers on how to deliver difficult news to their children.
New York Times Bestseller!
“This moving read will have you reaching for the tissues and smiling with delight….Stunningly alive on the page, Esther shows that sometimes the true meaning of life—helping and loving others—can be found even when bravely facing death.” –People Magazine, 4 stars.
In full color and illustrated with art and photographs, this is a collection of the journals, fiction, letters, and sketches of the late Esther Grace Earl, who passed away in 2010 at the age of 16. Essays by family and friends help to tell Esther’s story along with an introduction by award-winning author John Green who dedicated his #1 bestselling novel The Fault in Our Stars to her.
Wayne and Lori Earl are the parents of the late Esther Earl and founders of the non-profit organization, This Star Won’t Go Out whose mission is to financially assist families struggling through the journey of a child living with cancer. To date, TSWGO has given away more than $500,000 to families in need.
Millions of parents take their child to the hospital each year for stitches, outpatient surgery, or longer stays for serious illnesses. Your Child in the Hospital: A Practical Guide for Parents is packed with sensible tips and home-grown wisdom that will make any visit to the hospital easier. It explains how to cope with procedures, plan for surgery, communicate with doctors and nurses, and deal with insurance companies. Woven throughout the text are dozens of practical and encouraging stories from parents who have been through the experience of having a child in the hospital. This new edition contains a packing list, hospital journal for children, and helpful resources for parents. When you are packing the stuffed animals and pajamas to take to the hospital, make sure to take this book with you!
Nancy Keene is the mother of a long-term survivor of childhood cancer. A well-known writer and advocate for children with cancer, she has written many books about childhood cancer. Her work has also appeared in Reader’s Digest, Journal of the American Medical Association, Exceptional Parent, and Coping Magazine. In her spare time, she likes to read, hike with her dogs, and kayak in the waters of the Pacific Northwest.