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Melissa's Living Legacy: Teen Cancer Foundation

Melissa's Living Legacy: Teen Cancer Foundation. Group Members: Regina Blackley, Emma Gorman, Rachel Saroka, Kristen Stanton, and Krystal Stimus . About TLC. A Non-profit organization dedicated to providing resources for teens and young adults living with cancer

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Melissa's Living Legacy: Teen Cancer Foundation

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  1. Melissa's Living Legacy: Teen Cancer Foundation Group Members: Regina Blackley, Emma Gorman, Rachel Saroka, Kristen Stanton, and Krystal Stimus

  2. About TLC • A Non-profit organization dedicated to providing resources for teens and young adults living with cancer • Started by Lauren Spiker in remembrance of her daughter Melissa who passed away from AML at the age of 19 • It was her daughter's wish that she make a difference in the lives of other teens living with cancer

  3. TLC Goals • Serve teens by providing educational resources and an environment where they can connect with other people in their age group dealing with same issues • Help teens live as normal a life as possible throughout their disease and treatment • TLC Fit Program- 8 week exercise program offered to teens, after cancer treatment. Both in Rochester and Washington, DC

  4. Pharmacy Student Role • Provide chemotherapy drug information: • Impact on teen life/fitness • Potential long-term effects and their risk factors • Monitoring after end of treatment

  5. Service Learning Project • Compiled drug cards containing different chemotherapeutic agents more common to adolescent cancers • Presented material at a parents meeting, including question & answer session • Attended "Journeys," their annual "celebration of living," to help distribute auction items to winners

  6. Time Spent • Met with Lauren and Leah 3 times throughout project (~1 hour meetings) • Attended Journey's Fundraiser (3 hours) • Parents Meeting (2.5 hours) • Preparation: (6 hours) • Included: researching/compiling drug information, formatting cards, reviewing

  7. Journeys - "Showdown at the Saline Saloon"

  8. TLC Fit

  9. Outcomes • Provided information to parents about the potential long-term effects of chemotherapy -- focusing on fitness and adolescent health • Information that can be utilized to update TLC website • Reference material for future use in TLC fit program or distribution

  10. Knowledge Gained • Prevalence of adolescent cancer is increasing, but survival rates have improved less than pediatric and adult cancers • Treatment often undefined for teens- between pediatric and adult • Face own unique set of challenges; deal with body image issues, fitting in, acceptance by peers on top of challenges brought on by cancer • Long-term effects of treatment with teens is just now surfacing, as there is finally a population of survivors

  11. Effect on Future Pharmacy Practice • We will have a better idea of how specifically to counsel adolescent patients on chemotherapy medications; what impacts their lifestyle most • We learned how to better communicate with non-medical persons in the community and how to exchange information in a way they understand • We utilized our drug information skills to find relevant and good information to provide for the parents of TLC

  12. Future Suggestions/Optimization • More interaction with the teens could help give us a better idea of the struggles they're facing on a daily basis and help us to tailor what drug information to include or focus more closely on • Have parents provide us a list of questions/concerns prior to the meeting • Have parents provide us with a list of medications and treatments prior to the meeting • In the future, TLC could utilize the information provided to update their website or improve the TLC Fit program

  13. The Good and The Bad • Best • Journeys • Working with Lauren and Leah • Worst • Overload of information • Too formal - not enough discussion

  14. What would you tell your family about the experience? • My perception of what your "typical" cancer patient was changed; especially to watch them perform onstage at Journeys shows how positive and charismatic they are despite the challenges and medical treatments they're facing • Adolescent cancer patients are facing unique challenges, including a higher relative mortality rate, physical and social isolation, in addition to going through an already difficult time

  15. Thank You • A huge thank you to Lauren and Leah for their time and willingness to let us get involved! • Thanks to the parents and teens at TLC! • And of course, thanks to Dr. Parkhill for her guidance and patience!

  16. Resources • Children’s Oncology Group: • Long-term follow-up guidelines for survivors of childhood, adolescent and young adult cancers • Teens Living with Cancer website • http://www.teenslivingwithcancer.org/

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