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Life After Cancer

Cancer ... it is a small word that carries a huge weight. The stress involved is not limited to just diagnosis and treatment, but it carries with it issues that can last a lifetime. Cancer often leaves physical and emotional scars and carries with it a new normal after treatment that is filled with hope and sometimes anxiety over the after effects. The Life After Cancer (LACP) program is designed from the ground up to address the myriad of concerns that come up with related medical, psychological and social problems. In the last 20 years, more than 1,800 cancer survivors have received treatment at Cook Children’s in our program. For these patients we provide medical care for surveillance for the after effects of treatment, emotional and social support for helping to deal with diagnosis.

Our team involves the experience of Pediatric Hematologist/Oncologists, Internal Medicine, Family and Pediatric Nurse Practitioners, Social Workers, Nurses, Educators and Dietitians. Our goal is to provide medical care, education and lifestyle interventions to enhance lives. We actively participate in local, national and international research endeavors to learn more about cancer survivors and ways to promote health.

The Life After Cancer Program at Cook Children's is here to help ensure they have the support they need to enjoy a full and rewarding lifetime after cancer.

RESEARCH STUDY: Health Behaviors Survey for Survivors

The goal of this research study is to learn more about the health behaviors in childhood and adolescent cancer survivors. Researchers want to learn more about the reasons why some people exercise regularly, and eat healthy. Reasons why some people do not exercise or eat healthy are due to many things and researchers want to learn more about the reasons and help you live a healthier life.

If you were diagnosed before age 18 years, and are now a survivor, please complete this survey. Read each question and answer them honestly. This is an anonymous survey and no one but you will know you answered the way you did. It should take about 30 minutes to complete this survey. However, researchers would like to be able to contact you in the future if you choose to give researchers your contact information. We will use this information to ask if you may be interested in participating in other studies to help you improve your health.

Click here to take our online survey.

Thanks for your time in completing this survey. If you have any questions or concerns about this survey, or find that any of the questions are upsetting to you, and you would like to talk to someone, please contact the principal investigator (researcher), Lisa Bashore at 817-257-4248. If you have any concerns about your rights in this survey study, please contact the Cook Children's Institutional Review Board at 682 885-1764.

Who we are

The LACP team works to help childhood, adolescent and young adult cancer survivors by providing long-term medical and emotional support, education and resources to help them adjust to new changes in their lives now and in the future. The program is designed as a long-term follow-up program for patients who are two or three years past completion of cancer therapy. The program is lead by an advanced practice nurse, Stefanie Rapisand, RN, MSN, FNP-BC, CPN, under the medical direction of Dr. Donald Beam. Services are also supported by a licensed clinical social worker, nurse coordinator and augmented by a team of two research assistants.

What we do

The Life After Cancer Program (LACP) is a comprehensive cancer survivor program dedicated to address the many late effects which children, adolescents and young adults experience as a result of cancer treatment.

The survivorship program was the first non-academic program funded by the Livestrong Foundation. Services provided through the Life After Cancer Program include:

  • Thorough medical history and physical assessments
  • Thorough psychosocial assessments by a licensed clinical social worker (LCSW)
    • Counseling services by the LCSW
    • Social work services
    • Educational, financial and vocational counseling
    • Resources for college
  • Guidance and support for young adult survivors transitioning from pediatric to adult services
  • Multispecialty services by Hematology/Oncology LACP and Endocrinology clinic
  • Consultations in survivorship including the following pediatric specialties with Cook Children's and the adult community: Neurosciences, Cardiology, Nephrology, Pulmonology, Dermatology and others
  • Collaboration with other survivor centers, professional organizations nationally, and community programs to ensure quality survivor care is provided to our patients and the community at large
  • Research initiatives to:
    • Improve the health and health related quality of life for survivors
    • Successful transition to survivorship and to adult services
    • Encourage optimal cancer prevention and screening behaviors

The focus of the LACP is to ensure that cancer survivors undergo appropriate monitoring and follow-up, relevant to their original diagnosis and therapy. The ultimate goal is that they become independent young adults able to advocate for their own healthcare. Each patient receives a comprehensive treatment and follow-up summary with nationally approved guidelines of care. Continuity of care and access to community resources and counseling services are facilitated by our nurse coordinator and social worker and include guidance in:

  • Educational, financial and vocational counseling
  • Resources for college
  • Connecting with services to assist with transitions from school to higher education or vocational program

Focus on the future

The Cook Children's Life After Cancer Program contributes actively to clinical research through its participation in the Childhood Cancer Survivor Study (CCSS). The CCSS came into existence in the early 1990's, and has generated more important research than any other organization in describing the late effects and quality of life for survivors of childhood cancer.

Recently, the original group of 26 member institutions has been expanded to 30, with Cook Children's among the 4 successful new applicants. The CCSS is a National Cancer Institute funded resource designed to systematically evaluate a large group of cancer survivors as they progress into adulthood and their later years. Cook Children's potential value to this effort has been acknowledged, as well as our early success in tracing and recruiting several hundred potential candidates from among our survivor population.

We anticipate in the coming years a very active role for clinicians and other health investigators to conduct studies and provide leadership and educational opportunities on behalf of the CCSS at Cook Children's.

Events

Camp O'Hana
The LACP organizes an annual retreat for school-age and adolescent survivors (6-17 years) and their families.

C-YA (Celebrating Young Adults)
C-YA is both for young adults with cancer and survivors of cancer who are now young adults.

  • Survivors meet monthly to provide support and opportunities for networking with other young adult/adult survivors
    • Activities include appetizers, dinners, trips to local events and entertainment
  • Work closely with our Adolescent and Young Adult community (AYA) program to provide opportunities for mentoring newly diagnosed AYA patients, and to provide educational opportunities in a young adult group environment.
  • Quarterly education workshops are available for young adults covering many topics like financial health, educational health, careers and training, exercise, and emotional and medical health.

Call Joyce Bender at 682-885-2164 for more information on the Life After Cancer program and events.

Resources

In an effort to enhance general knowledge of survivorship issues, the LACP is also committed to clinical research through both nursing initiatives as well as those undertaken by the large national Childhood Cancer Survivor Study of which the LACP was granted membership in 2000.

Clinical trial forms and documents can use a lot of words that you might not understand. Below are some helpful Web site links to help you learn more about these terms.

We are here to help.

If your child has been diagnosed, you probably have lots of questions. We can help. If you would like to schedule an appointment, refer a patient or speak to our staff, please call our offices at 682-885-4007.