Childhood Cancer Survivors

SEBASTOPOL, CA – This year’s list of aftercare centers for childhood cancer survivors in the United States has been named by a group of parents of survivors, including Nancy Keene, well-known patient advocate and author of books that help families of children with cancer.

“The powerful drugs and radiation used to cure children affect developing minds and growing bodies,” said Keene, co-author of Childhood Cancer Survivors: A Practical Guide to Your Future. “270,000 survivors of childhood cancer live in the U.S. and unfortunately, they often do not get comprehensive follow up to help them make the most of the lives they fought to win.”

After years of personally answering hundreds of phone calls and emails from desperate survivors searching for doctors who understood their unique needs, Keene helped create this list of programs for childhood cancer survivors. Again this year, she surveyed major children’s hospitals across the nation to find out which ones currently provided comprehensive services to children, teens, and adults who are survivors of childhood cancer.

Follow-up Clinics for Childhood Cancer Survivors

SEBASTOPOL, CA – This year’s list of aftercare centers for childhood cancer survivors in the United States has been named by a group of parents of survivors, including Nancy Keene, well-known patient advocate and author of books that help families of children with cancer.

“The powerful drugs and radiation used to cure children affect developing minds and growing bodies,” said Keene, co-author of Childhood Cancer Survivors: A Practical Guide to Your Future. “270,000 survivors of childhood cancer live in the U.S. and unfortunately, they often do not get comprehensive follow up to help them make the most of the lives they fought to win.”

After years of personally answering hundreds of phone calls and emails from desperate survivors searching for doctors who understood their unique needs, Keene helped create this list of programs for childhood cancer survivors. Again this year, she surveyed major children’s hospitals across the nation to find out which ones currently provided comprehensive services to children, teens, and adults who are survivors of childhood cancer.

The list names 26 clinics across the US (see below). Criteria to be included on the list include:

Autistic Spectrum Disorders An Interview with  Author-Advocate Mitzi Waltz

Interview Contents:

This interview with Mitzi Waltz, author of Autistic Spectrum Disorders, looks at questions most often in the news. After working in the US as an advocate for people with brain disorders for a number of years, Waltz has decided to pursue a doctorate in order to teach and conduct academic research. She is currently with the Autism Research Unit at the University of Sunderland in England. The ARU is well-known internationally for its work on the relationship between autism and metabolic disorders. Waltz’s doctoral research is focused on the medical history of autism, and she has presented to audiences in the UK and Europe on this topic and others related to autism.

Rising Rate of Diagnoses

Mario and Oralia Tercero Come to America and Discover a Health Library

The translation team for Ayudando a su Hijo en el Hospital (the English title Your Child in the Hospital) is Mario and Oralia Tercero, working with staff from the PlaneTree Health Library in San Jose, California. The Tercero’s personal search for health information precipitated their move to the United States and eventually brought them to PlaneTree Health Library.

Mario was born in Honduras. When he was young, he had only rudimentary English in school, such as words like “cat” or “table.” However, from 1985 to 1995, Mario lived in San Jose with relatives there. He attended high school and took ESL classes. Thus, his first “translation” work was getting through high school in the US.

Mario returned to Honduras when his mother became ill; as the only unmarried child, it was his family duty. While studying Industrial Engineering at university, he met Oralia. They studied together every night until midnight.

Library Journal Reviews  Ovarian Cancer

Kristine Conner and Lauren Langford. Ovarian Cancer: Your Guide to Taking Control.
O’Reilly. (Patient-Centered Guides). 2003. c.600p. ISBN 0-596-50016-5. pap. $29.95

Ovarian cancer is one of the deadliest cancers because of its generally late diagnosis (the symptoms don’t really appear until the cancer has spread beyond the ovaries) and the lack of screening tests. Health writer Conner and Langford, an ovarian cancer survivor, have written a great patient education book for the recently diagnosed.

Sections cover finding a doctor, getting a second opinion, reading your own diagnosis, and dealing with everything from health insurance to end-of-life issues. Particularly nice are the lists of actual questions to ask your doctor and “10 things to do now” once you’ve been diagnosed. Perhaps a little too detailed for many lay readers, this work will nevertheless fulfill the needs of someone seeking all the information possible on the disease.

While many general cancer books mention ovarian cancer, few focus on it exclusively, so most libraries will want to add this to their collection. Recommended for public and

NAMI Reviews Obsessive-Compulsive Disorder

The NAMI Advocate, Spring 2002, includes the following unedited review of Obsessive-Compulsive Disorder: Helping Children and Adolescents, by members of the NAMI Literature Committee.

“Family members searching for information about obsessive-compulsive disorder (OCD)-and about the difficult behaviors that often accompany it and disrupt family life-will welcome this volume. Author Mitzi Waltz, an advocate for children with disabilities, has two children with OCD and thus has firsthand experience with the disorder.

“In Obsessive-Compulsive Disorder, Waltz debunks the myth that OCD is rare. In fact, it is thought to be the fourth most common psychiatric diagnosis. Research indicates that OCD is a brain disorder rather than a result of rigid toilet training or disturbed parents.

“Waltz explains that OCD usually responds to treatment with medication and cognitive therapy. She is quite upbeat about treatment, although some readers may find her tone too enthusiastic, because locating a cognitive therapist who works with OCD in children in a managed-care and state funded environment can present formidable difficulties.

Oncology Nursing Forum Reviews Non-Hodgkins’ Lymphomas

This book is offered as a layperson’s guide to the lived experience of non-Hodgkin’s lymphomas (NHL). It could be used easily by anyone who wanted more information about NHL, such as patients, friends or loved ones of patients, or nonmedical personnel involved in the care of those with this illness. This book would be helpful at any point in living with the disease, whether it be coping with the initial shock of diagnosis, making sense of the past, or negotiating any twists and turns along the way. The author has no formal medical background but possesses a wealth of firsthand knowledge of the disease. Johnston became an expert when caring for both her mother and husband, who are long-term survivors of lymphomas. In addition, she used patient vignettes for illustration throughout. Non-Hodgkin’s Lymphomas is one of a group of patient-centered guides offered by this publisher, each of which deals with a different health-related problem.

About.com Gives Lung Cancer  by Lorraine Johnston Five-Star Review

Lung Cancer: Making Sense of Diagnosis, Treatment, and Options, by Lorraine Johnston (published by O’Reilly & Associates, Inc., 2001; ISBN 0-596-50002-5) addresses in easy-to-understand language the medical, emotional, and support needs of a patient with lung cancer. Useful for patients themselves as well as their families and friends, caretakers, and survivors this patient guide is composed not only of a wealth of up-to-date information but patient and family accounts of their experiences as well. Johnston provides through her book a useful tool for anyone wanting to increase their knowledge of the issues around being a lung cancer patient.

“This book discusses lung cancer symptoms, diagnosis, staging, treatments and prognosis and is reviewed by top medical experts and physicians in the field. Its content is broad in scope and discusses the medical side of these issues but moves beyond medical explanations as well. In a straightforward manner it explains these and other pertinent issues in such a way that prepares the patient for what to expect. For example,

Oncology Nursing Society Reviews Lung Cancer

“Reducing the mortality rate of lung cancer continues to be a major priority in cancer research and disease management. This publication is a comprehensive text on lung cancer, written in layman’s terms. It reviews the entire spectrum of the disease process from prevention and diagnosis through the treatment trajectory, symptom management, disease recurrence, and terminal care. According to Johnson, the text is a resource for patients recently diagnosed with lung cancer and long-term lung cancer survivors, as well as their caretakers. Although the author does not identify nurses or healthcare workers as a potential audience, the text is an excellent resource for nursing students, new graduates, and novice oncology nurses.

Lung Cancer is well organized and progresses cleanly through each process of the disease trajectory. Examples of the client’s lived experience are included to add reality and inspiration for patients with lung cancer and their significant others. The text is an excellent empowerment tool, provides correct and current clinical information, and promotes appropriate treatment choices for clients with lung cancer and their caregivers.

An Interview with  Author-Advocate  Nancy Keene

Interview Contents:

Introduction

Treating childhood cancer is one of modern medicine’s greatest success stories. The cure rate for childhood cancer has jumped from a meager 10% in 1970 to today’s overall survival rate of almost 70%. This has led to a new generation of young adults: a generation of childhood cancer survivors.

Despite this “good news,” a diagnosis of childhood cancer is devastating for the family. Childhood cancer is treated aggressively, often with a combination of chemotherapy, radiation, and surgery, at a time of life when bodies are growing and developing. Treatment can have a significant long-term impact on children’s physical and psychological health. Additionally, parents of children with cancer are often young, have limited incomes, and they may have other children. One parent often needs to give up a job to take care of child being treated for cancer.

Treatments can last from one year to several years depending on diagnosis. The long-term emotional and economic impact on the family is huge.