A key strategy of the Rein in Sarcoma Educational Program is to reach medical professionals who are apt to first see what turns out to be a sarcoma cancer. Through such education we hope that sarcoma cancer will be diagnosed more quickly, leading to significant increases in sarcoma survivorship. RIS launched its first program directed to school nurses, starting at the Osseo School District on March 7th.
Marlee Brice, a retired RN and Red Flags Committee member, began contacting school districts last fall to evaluate interest in RIS presenting an educational program called Understanding Pediatric Sarcomas to their school nurses. Elaine Forbes of Osseo School District invited us to present to the Osseo School Nurses.
Marlee and Sue Wyckoff presented to about 25 elementary school nurses at 7:30 a.m. Marlee shared a presentation on the signs and symptoms of the three most common sarcomas in children: Rhabdomyosarcoma, Osteosarcoma, and Ewings Sarcoma. Sue followed by presenting the stories of Jocelyn Dickhoff, Julian Baultrippe and longtime survivor Julie Rose. The program was well-received and the nurses asked questions and filled out evaluation forms.
Mayo Sarcoma Scholars, Claire Cambron and Tessa St. Cyr had worked very hard to set up a sarcoma education day at Mayo Medical School on March 8th. Dr. Steven Robinson was to give a lecture to the first and second year students on Sarcoma diagnosis and treatment. Unfortunately that morning Dr. Robinson was called away.
Fortunately, a call to our first RIS Sarcoma Scholar, Dr. Brad Stish, who is now a radiation oncologist at Mayo was answered in the affirmative. He had his last patient of the morning scheduled for 11:45 and he said he would then run over and deliver the lecture. We sent him some slides from a previous lecture by Dr. Robinson to which he added some of his own thoughts. He arrived practically as soon as the students had served themselves lunch. He gave a very interesting lecture. The students listened attentively and then asked him some excellent questions.
Dr. Stish was followed by Judy Jones, a sarcoma survivor who told the story of her diagnosis. By the time she was diagnosed, the sarcoma tumor in her leg was quite large and it had metastasized to her lung. The doctors thought it was too large to remove and in too difficult a place to amputate so they began chemotherapy. On her fifth day of inpatient chemo, Judy’s femur fractured and the doctor on call, Dr. Frank Sim, removed the tumor and spared the limb. She had had several chemotherapy treatments and surgery to remove the tumor in her lung.
Judy is now five years cancer free and enjoying life to the fullest. The time for the lecture ran out after Judy’s talk; so ever flexible, Claire and Tessa told the students that they would tell them about their Sarcoma Scholar year by email. Claire and Tessa have done a good job of providing several cancer programs for the students, and they are planning a public lecture at the Rochester Public Library in June.
We want to thank Dr. Stish for all he has done in the nine years since he was a sarcoma scholar to help patients and bring awareness of sarcoma to the community. He is living proof of the idea Dr. Dusenbery, University of Minnesota Radiology Oncologist, had when she proposed the Sarcoma Scholar Program to the Rein in Sarcoma Board. She envisioned that the scholars would not only have a year of learning about and spreading information about sarcoma, but that they would have a career of bringing sarcoma to the attention of their peers. Since that 2009 beginning, the program has expanded to scholars from the University of Minnesota and Mayo Medical Schools, and involved 37 scholars.
Summit Brewery graciously hosted our Party in the Park Kickoff planning meeting in their rathskeller. Attendees enjoyed social time with a tour of brewery and a pint of root beer or a Summit beer, and food from the Signatures food truck. Chef Derek Grams cooked and donated a portion of earnings towards our work.
To inspire and remind attendees of the impact of their volunteer efforts, Robert Gao, Sarcoma Scholar alum and third year medical student specializing in radiation oncology shared progress on the Hallie Anne Brown Education Initiative. Robert has been working with the RIS/Health Partners/Regions steering team on a pilot project with the goal of using the Electronic Medical Record (EMR) system to improve sarcoma diagnosis speed and accuracy resulting in improved sarcoma patient outcomes. Robert analyzed diagnostic codes and physician’s notes to find the most frequent signs, symptoms and phrases which eventually became a soft tissue sarcoma diagnosis. This analysis will be used to modify the EMR system to alert physicians to the potential of a sarcoma tumor, and communicate the proper way to image, biopsy, and diagnose or rule out sarcoma.
Frank Miske, our Event Chair, ‘kicked off’ the official Party in the Park planning. In addition to being a long time RIS PR – Marketing Committee member, Frank has planned and participated in Twin Cities fundraising events for local food shelves, veterans, and students. We are excited to tap his experience and insight. Frank introduced the Party Leadership team, as each lead had a chance to share the activities of their sub-committee. Sub-committees are: Logistics, Picnic, Registration, Merchandise, Raffle, Auction, Marketing, Volunteer Coordination, Luminaries, Concessions, Ring Toss and Garden of Hope. To highlight a few areas: