30 th. November 15-17, 2007 S A V E T H E D A T E PAID. Hyatt Regency Grand Cypress Hotel Orlando, Florida. Help us update...

Transcription

1 Florida Association of Pediatric Tumor Programs, Inc Spectrum Blvd, Suite 100 Tampa, FL Help us update... Please indicate any changes and/or corrections needed next to your name and address. FAX a copy of this panel to include the address label with your corrections to: Remove my name from your mailing list. Change name or address as shown on label. I am receiving duplicate copies; please remove one from your mailing list. NON PROFIT ORG U.S. Postage PAID Permit No Tampa, FL S A V E T H E D A T E 30 th FLORIDA ASSOCIATION OF PEDIATRIC TUMOR PROGRAMS INC Anniversary Advances in Pediatric Hematology/Oncology November 15-17, 2007 Hyatt Regency Grand Cypress Hotel Orlando, Florida One Grand Cypress Blvd Orlando, FL Toll Free: Fax:

2 All Children's Hospital Baptist Children's Hospital Chris Evert Children's Hospital at Broward General Medical Center Children's Hospital of SW Florida at Lee Memorial Health System Children s Center for Cancer & Blood Diseases at Florida Hospital Cancer Institute Joe DiMaggio Children's Hospital Miami Children's Hospital M D Anderson Cancer Center FAPTP Footnotes "Advances in Pediatric Hematology/Oncology" Highlights from our 29th Annual Seminar Both tropical and traditional, The Island Grand was a fun, family-friendly, Florida beach resort and the perfect venue for our 29th annual Seminar, Advances in Pediatric Hematology/Oncology. We would like to start off by thanking this year's Seminar Medical and Nursing Directors from All Children's Hospital in St. Petersburg, FL: Michael Nieder, MD, Director, Blood and Marrow Transplant Program and Bethany Harmon, MSPH, MSN, ARNP. They did an excellent job and we appreciate their effort and willingness to participate. We would like to also thank Sanofi Aventis for sponsoring the very tasty "light snack" which was made available to all attendees arriving 30 minutes prior to the opening announcements of the seminar. Through the generosity of Chris Evert Children s Hospital at Broward General Medical Center, three big Hat Boxes filled with goodies which included gift certificates for a restaurant, movie rental, and bookstore, as well as decadent chocolate, cheese, crackers, cookies, luxurious spa products, and much, much, more. A drawing was held each day at the beginning of the seminar; the only stipulation, you had to be present to win. Everyone who registered for the seminar was automatically entered into the drawing. Needless to say, we started each day with a full house of eager students ready to learn and to possibly win. Nemours Children's Clinic-Jacksonville Nemours Children's Clinic-Orlando Nemours Children's Clinic at Sacred Heart Children's Hospital Nicklaus Children s Hospital at St. Mary's Medical Center Palm Beach Pediatric Hematology/Oncology at Palms West Hospital St. Joseph s Children s Hospital of Tampa UF & Shands University of Miami Jackson Memorial Medical Center Congratulations to the three hat box winners: Bari Hunt, RN, Carolina's Medical Center, Charlotte, NC; Carolyn Bell, RN, CPON, CCRP, Children's Hospital of SW Florida at Lee Memorial Health System, Ft. Myers, FL; Hyacinth Richards, RN, Children's Medical Services, Ft. Pierce, Florida Thursday s Winner Bari Hunt, RN Friday s Winner Carolyn Bell, RN, CPON, CCRP Saturday s Winner Hyacinth Richards, BSN A Quarterly Newsletter Seminar Highlights continued on page 2 What s Inside??? 6. News from the Centers 7. Patient Outreach 8. Save the Date 2007 Annual Seminar

3 FAPTP Footnotes 2 Seminar Highlights continued from page 1continued from page 1 Once the welcome and opening announcements were done, the seminar officially started with the first speaker of the HEMOPHILIA SESSION; Anthony Villella, MD, who shared his expertise on "Sickle Cell Anemia: It's not Just About Pain." Dr. Villella is an Assistant Professor in the Division of Pediatric Hematology/Oncology at the Case Western Reserve University, School of Medicine, and the Director of Rainbow Sickle Cell Anemia Center at Rainbow Babies & Children s Hospital in Cleveland, Ohio. As such, he is involved in many of the large NIH and industry-supported international cooperative clinical trials for patients with sickle cell anemia. The next speaker was Olga Nuñez, BSN, Research Clinical Nurse Specialist at the National Heart, Lung, & Blood Institute, Hematology Branch at the NIH in Bethesda, Maryland. Ms. Nuñez has a special interest in Aplastic Anemia and has published several articles in both JAMA and Blood related to her work with hematology patients and especially those living with Aplastic anemia. She presented an: Overview of Aplastic Anemia. Next, we welcomed W. Keith Hoots, MD, sponsored by ZLB Behring. Dr. Hoots is the Hematology Section Head in the Division of Pediatrics at the University of Texas, M.D. Anderson Cancer Center, and the Medical Director of the Gulf States Hemophilia & Thrombophilia Diagnostic and Treatment Center at the University of Texas, Health Science Center in Houston. Dr. Hoots shared his knowledge with his talk entitled: von Willebrand s Disease. The next speaker was Iftikhar Hanif, MD. Dr. Hanif is the Center Director at Joe DiMaggio Children s Hospital at Memorial in Hollywood, Florida. Many attendees met Dr. Hanif last year when he served as the FAPTP Seminar Medical Director. Dr. Hanif spoke on Adult Transition in Sickle Cell Disease. Bayer Healthcare Corporation sponsored our last speaker of the day, Leslie Oygar, RN, BSN, MPH. Ms. Oygar is the Hemophilia Nurse Educator with CuraScript Specialty Pharmacy and is known throughout the State for her efforts to establish optimum care for pediatric and adult hemophiliacs. Her emphasis is on patient and family education. She serves as a resource liasion for the professional healthcare community. Ms. Oygar shared her experiences on hemophilia with her session entitled Hemophilia 911: The Lean, Mean, Nursing Machine. Everyone was then invited to a Dinner, DJ, and Dance which was hosted by Matrix Health Group and FAPTP. We sincerely appreciate their support of this event and the special touch it brings each year. Our appreciation goes out to Sanofi Aventis for sponsoring Friday and Saturday morning s continental breakfasts. After breakfast, the ONCOLOGY SESSION began with a presentation from Nancy Price Mendenhall, MD. She is Professor and Chairman of the Department of Radiation Oncology at UF, and Medical Director of UF Proton Therapy Institute in Gainesville, Florida. Dr. Mendenhall has published numerous articles and abstracts on her research interests of radiation therapy and its many uses. Her presentation was entitled Advances in Radiation Therapy for Children: The Role of Protons. Sigma Tau Pharmaceuticals sponsored our next speaker, Vicki Fisher, RN, MSN, CNP, CPON. She is a Nurse Practitioner and Program Manager of the Pediatric Blood & Marrow Transplant Program at Rainbow Babies and Children s Hospital and the Ireland Cancer Center in Cleveland, Ohio. She is an excellent educator and speaker, and has spoken at The Center for International Blood and Marrow Transplant Research, ONS, and APON conferences. We were pleased to have Ms. Fisher speak on Viral Infections During Blood and Marrow Transplant. Next we heard from Stephanie Webb, MBA, RN, BC, CPN, a Clinical Educator for the Children s Medical/Surgical unit at Primary Children s Medical Center in Salt Lake City, Utah where she facilitates the clinical and didactic orientation of new employees and develops and implements continuing staff education. Ms. Webb has been a Clinical Educator for a variety of pediatric patient populations including surgery, medical, oncology, trauma, and rehab, and has recently completed her Masters in Business Administration. She spoke to us about Disseminated Intravascular Coagulopathy in Pediatrics in her presentation entitled DIC: The Clot Thickens.

4 News From the Centers FAPTP Elects New Officers to their Executive Committee The staff at The Florida Association of Pediatric TumorPrograms, Inc. (FAPTP) is proud to present the newly elected Executive Committee Officers: President: Emad Salman, MD, Center Director Children's Hospital of SW Florida at Lee Memorial Health System (239) Secretary: Vice President: Julio C. Barredo, MD, Center Director University of Miami/Jackson Memorial Medical Center Department of Pediatrics (305) Melissa Singer, MD, Center Director Palm Beach Pediatric Hematology/Oncology at Palms West Hospital (561) FAPTP Footnotes 7 Patient Outreach Calling for all Volunteers Volunteers are currently being recruited for the American Cancer Society s R.O.C.K. (Reaching Out to Cancer Kids) Camp with Camp Boggy Creek in Eustis, Florida. Please refer to the 2007 fact sheet below for the dates. Volunteers should be 19 years or older and ready to have a wonderful time with campers ages Medical volunteers are needed as well. Please contact Robin Brubaker, Volunteer Coordinator, Camp Boggy Creek at , ext. 293 or and click on the volunteers. Dr. Susan Griffis is the Medical Director at Camp Boggy Creek and may be contacted at ext. 282 for information about volunteering at The Patch. All applicants are screened via telephone interview and must pass a criminal clearance check and supply references. Volunteers arrive 24 hours before each session of campers for intensive staff training. For more information about R.O.C.K. Camp, please contact Judy More, R.O.C.K. Camp Coordinator, American Cancer Society at , ext WHO: WHAT: WHY: WHEN: WHERE: COST: ACTIVITIES: CONTACT: The American Cancer Society s R.O.C.K. Camp 2007 Fact Sheet American Cancer Society s R.O.C.K. (Reaching Out to Cancer Kids) Camp in partnership with Camp Boggy Creek and children and teenagers, ages 7-16, who are referred by pediatric oncology centers and private practices, currently being treated for cancer or who have not been off treatment for more than three years. Full time volunteer medical staff includes resident pediatric oncologists and nursing personnel. Established in 1976, R.O.C.K. Camp is the first camp for children with cancer in the United States. R.O.C.K. Camp is one of three American Cancer Society R.O.C.K. Programs in Florida. The other programs are Families R.O.C.K. Weekend and R.O.C.K. College Scholarships. Florida s first and only residential camp exclusively for children with cancer offers campers an opportunity to experience the fun and adventure of summer camp without having to feel different from other kids. In 2007 the camp will be held from May 26-June 1, and June There are two, week-long sessions. Children from North Florida and the Orlando area attend May 26-June 1. Children from South Florida, Tampa and St. Petersburg attend June Volunteer counselors and medical staff arrive one day before campers for in-depth staff training. Camp Boggy Creek is located in Eustis, Florida. (approximately 40 miles northwest of Orlando). All R.O.C.K. Campers attend free of charge. Campers are encouraged to ride the American Cancer Society s free chartered buses. All of the traditional summer camp activities such as swimming, music, arts and crafts, archery, sports, fishing, talent shows, horseback riding and camp fires. Before R.O.C.K. Camp the children and their families are invited to attend local send-off parties where the excitement starts to build. Judy C. More, R.O.C.K. Camp Coordinator, American Cancer Society, Florida Division 3709 West Jetton Avenue Tampa, FL x 406

5 FAPTP Footnotes 6 It was officially recorded in Lee County that the purchase of Southwest Florida Regional Medical Center (SWFRMC) and Gulf Coast Hospital (GCH) had been completed with the official closing effective October 1, 2006, well within the two-month period that was established by LMHS and HCA officials. The transition to convert information systems, accounting systems, and facility operations will be done over a period of time so that services will not be disrupted. All employees of SWFRMC and GCH have been offered employment by LMHS and the transition to LMHS employment will occur over a period of weeks as they work with each employee to assure there is no disruption in pay or benefits. What does this mean for the community? For now, it will be business as usual. We are not changing any services or programs that are offered at any of the hospitals. We want to work with the team at SWFRMC and GCH, learn from one another, and build together, with our community a new future in healthcare, said Jim Nathan, LMHS President. Now that the hospitals have come together, we can do an even better job of News From the Centers Lee Memorial Health System Completes Purchase of Local Hospitals focusing on quality and operations improvement to serve our community. LMHS is a public health care system created by the state of Florida and governed by a publicly elected Board of Directors. It has served the citizens of Lee County and surrounding communities since 1916 and is the largest public health care system in Florida operating without local taxes or local taxing power. The newly combined health system will employ nearly 8000 to operate five acute-care hospitals, a skilled nursing facility, a rehab hospital, a children s hospital, home health, outpatient and physician practices. A process has already been established to listen to physician issues and concerns and to identify an effective structure that engages physician leadership and input to the health system in years to come. Also over the next few months, the LMHS Board will be encouraged to identify ways to engage the community, physicians, volunteers, and employees in visioning the future of a truly leadingedge, high quality health system for the citizens of Lee County, Nathan added. We need to focus our attention on improving the health status of the people we serve. Press contact information: Karen Krieger, Director, Public Affairs Phone: Pager: Karen.krieger@leememorial.org Dr. Vincent Giusti and Dr. Don Eslin joined M.D. Anderson Cancer Center Orlando in conjunction with Arnold Palmer Hospital for Children in February Their staff includes Becky Martin, ARNP, inpatient oncology nurse practitioner; Liana Bristol-Cruz, ARNPC, outpatient oncology nurse practitioner; Virginia Gothard, CPNP, outpatient hematology. The staff in the outpatient clinic includes Maureen Sanders, RN, Team Leader, Mimi Johnson, RN, BSN, Rosie Canty, RN, Marlene Vangelakos, RN, Michele Pope, RN, BSN, Clinical Research Coordinator (CRA), Usha Mahabir, Medical Assistant and Tracy Thurmond, Child Life Specialist. The entire staff are very happy to be in their new home! Dr. John Kelleher left Nemours Children s Clinic at Sacred Heart Health System in March He will be taking a position with Amgen Pharmaceuticals in Thousand Oaks, California. Dr. Kelleher will be greatly missed. He has ben a great help in advancing their Hematology/Oncology Department at Nemours Pensacola. Dr. Chatchawin Assanasen will assume the role as the CCOP Principal Investigator at their institution. They are presently in the process of finding a new Center Director for Nemours Pensacola. On January 1, 2007, Patricia Shearer, MD, joined the group as Associate Professor of Pediatrics. Dr. Shearer completed her pediatrics residency at Johns Hopkins and her fellowship training at St. Jude Children s Research Hospital. Her major clinical and research interests are pediatric solid tumors, ototoxicity, and late effects. Dr. Shearer will play a major administrative role in our clinical program and will also begin to establish a late effects clinic.

6 continued from page 1 After the excellent lunch provided by Nemours Children s Clinics (Jacksonville, Orlando, and Pensacola) and FAPTP we heard from our first speaker of the afternoon. Brian Greffe, MD. Dr. Greffe is the Executive Director of Children s Hospice International Colorado, and Medical Director of the Butterfly Program, a Pediatric Palliative/Hospice Program at The Children s Hospital in Denver, Colorado. He shared his expertise on Easing Pain and Suffering: The Role of Palliative Care in Pediatric Oncology. Following Dr. Greffe, our next speaker was Deborah Robinson, MSNR, RN, BC, PNP, CPON. She is a Pediatric Nurse Practitioner at St. Louis Children s Hospital in St. Louis, Missouri. Ms. Robinson has shared her unique knowledge in several publications as well as presenting at previous APON conferences. She spoke to us on the Management of Acute and Delayed Vomiting in Children Receiving Chemotherapy: Evidence- Based Guidelines and New Research. Next, we heard from Myra Woolery- Antill, MN, RN, CPON. She is a Senior Clinical Nurse Specialist at the Pediatric Hematology/Oncology, and Stem Cell Transplant Office of Research at the National Institutes of Health in Bethesda, Maryland. Ms. Woolery has authored numerous articles in the Oncology Nursing Forum, and in the Journal of Pediatric Oncology Nurses. She wrote the chapter on Biotherapy in APON s standard textbook, Nursing Care of the Children and Adolescents with Cancer. She spoke to us on the subject of, "Biological Therapies." To end the day's session; Dr. Michael Nieder personally facilitated our very popular game of Hematology/ Oncology Jeopardy. Correct answers were rewarded with chocolate! THE PSYCHOSOCIAL SESSION began with Cheryl Wilkinson, MA, BSN, CPON. Ms. Wilkinson is from the Cancer Institute at Children s Hospital Orange County in Orange, California, where she works primarily with patients and families with hematology/oncology diseases. She is an APON End of Life Nursing Education Trainer, and has been involved with research in pediatric cancer survivor patients in the public school systems. Ms. Wilkinson helped us answer the many questions that arise when dealing with grief in her presentation entitled When a Child Dies: Dealing with Death, Grief, and Bereavement. Our next speaker was Sandra K. Ring, MS, CCLS. Ms. Ring is the National Outreach Director of SuperSibs!, which is an organization that supports and recognizes the brothers and sisters of children with cancer. Ms. Ring has represented Siblings and their own unique needs and issues at the Child Life Council, Association of Pediatric Oncology Social Workers, the Leukemia and Lymphoma Society of Mississippi, the Children s Oncology Camping Association, Lance Armstrong Foundation Partners Conference, and the Children s Oncology Group. We all left with an increase in our awareness of cancer sibling issues with her presentation entitled Re-defining the Cancer Sibling Experience. The next speaker was Susan K. Parsons, MD, MRP. She is an Associate Professor at Tufts University School of Medicine and Director of the Center on Child and Family Outcomes Institute for Clinical Research and Health Policy Studies at the Tufts-New England Medical Center in Boston, Massachusetts. Dr. Parsons has spoken extensively on quality-of-life issues and agreed to share some of her research and understanding on Evaluating the Impact of Pediatric Hematopoietic Stem Cell Transplantation on Health- Related Quality of Life. Our Keynote Speaker, LeAnn Thieman, CSP, concluded our seminar. Ms. Thieman inspires people to balance their lives, live their priorities, and make a difference in the world. Besides being a certified speaking professional, LeAnn is a nurse and an accomplished author. Her airlift story and expertise as an advocate for nurses, caregivers, and other health professionals, has appeared in media such as CNN, NPR, BBC, FOX-News and on the PAX-TV show, It s A Miracle. Presently negotiations are underway for LeAnn s story to be made into a Hollywood feature film! She has stories in ELEVEN Chicken Soup books and is coauthor of Chicken Soup for the Nurse s Soul, Christian Woman s Soul, Caregiver s Soul, Grandma s Soul, Father- Daughter Soul, Christian Soul 2, and Chicken Soup for the Mother-Son Soul. LeAnn shared true stories and life-balancing lessons that inspired, uplifted, and encouraged, leaving the attendees with a bit of Chicken Soup for your Nurse s Soul. FAPTP Footnotes 3

7 FAPTP Footnotes Thank you to Matrix Health Group and FAPTP for the Dinner, DJ, and Dancing! As the attendees made their way towards the beach and pool area for Dinner, DJ and Dancing, 4 they were greeted with a spectacular sunset! It didn t take long after dinner before the DJ cranked the music up a notch and we had dancing under the stars! The weather was great and everyone had a great time. You put your right foot out... then what? We are the true "Dancing Queens." YMCA...hey this is not too hard! After all the hard work it s time to kick back and relax. Brian J. Calkins FAPTP Program Director Michael Nieder, MD Seminar Medical Director Bethany Harmon Seminar Nursing Director

8 FAPTP gratefully acknowledges the following organizatons for their generous support of the 2006 Seminar: PLATINUM LEVEL SPONSORS FAPTP Footnotes Jacksonville, Orlando, Pensacola 5 GOLD LEVEL SPONSORS SILVER LEVEL SPONSORS All Children's Hospital Chris Evert Children's Hospital at Broward General Medical Center Enzon Pharmaceuticals Genzyme Oncology Orlando Regional Healthcare BRONZE LEVEL SPONSORS American Cancer Society Baxter BioScience Joe DiMaggio Children's Hospital Legacy Products ViraCor Laboratories Wyeth Hemophilia