DONNA Health Expo

By staff

Donna Booth 2016_0.jpgThe 26.2 with DONNA: The National Marathon to Finish Breast Cancer has become a staple of the annual events calendar in Jacksonville for runners and spectators alike. Held each February in Jacksonville Beach since 2008, the marathon is dedicated to raise funds and awareness for breast cancer treatment and research.

Part of the marathon weekend is a health and fitness event, the DONNA Expo, at the Prime Osborn Convention Center, 1000 Water St., Jacksonville. The free expo is February 10 and 11 and includes breast cancer health information booths, fitness and running attire vendors, food and nutrition displays and more. UF Health Proton Therapy Institute will have a booth to distribute information about proton therapy for breast cancer. It is a great opportunity to spread the word about proton therapy and to support the cause to finish breast cancer.

Executive Director Message

StuartKlein.pngProton therapy for children with cancer can mean the difference between a life with severe challenges and one with minimal treatment side effects. Since day one, we have created a specialized pediatric proton therapy team with people who are highly trained and skilled in treating children. The program has grown during our first 10 years to be the largest of its kind worldwide, treating 25 to 30 children per day.

This month we are in the process of renovating our pediatric recovery room to enhance the healing environment. It is also the time of year we have an annual visit from “Santa Joe,” a treasured gift from proton alumnus Joe McGee that always brings cheer to our children and staff. Soon we will be unveiling a new iPad® app just for children being treated here. These extras are possible through the generosity of individuals, many of whom are proton alumni. During this gift-giving season, please consider making a gift to our pediatric program. Your donation will make a significant difference in the life of a child who has cancer.

Best wishes to you and your loved ones for a happy holiday season.

Stuart L. Klein

Executive Director

Melissa Burhans, The Heart of Third & Main

By Theresa Edwards Makrush

Melissa-horiz_0.jpg
Melissa Burhans adorns her office with greeting cards from her proton friends.

People from all walks of life find a home away from home at Third & Main, a short-term patient housing complex in Jacksonville’s historic Springfield community. Fully equipped with every modern convenience, the 35-unit complex is within two miles of the UF Health Proton Therapy Institute, an easy commute to daily treatment. Residents are almost all proton therapy patients and quickly become neighbors who look out for each other, socialize together and often become lifelong friends after their six- to eight-week stay.

The reason Third & Main quickly feels like home, residents say, is because of the property manager Melissa Burhans. “She’s got a really dynamic personality. The way she treats people, she’s interested in their lives. She has a passion for helping people,” said Scott Drosos of The Villages, Fla., who stayed at the apartments while he was having proton therapy for prostate cancer.

In fact, helping people and creating a comfortable, welcoming place for them, Melissa says, is the best part of her job. “That’s the most important part of my job is the personal connections,” she said. “If it means coming in a little early or staying late to do paperwork I don’t mind. As long as I have time to sit and have morning coffee and pastries with people and get to know them and introduce them to other people who have the same interests, that’s what’s most important.”

If it feels to patients like Third & Main is part of the Institute, that’s intentional. Melissa said she takes her cue from watching Bradlee Robbert, patient services director at the Institute, and the way he interacts with people in the lobby and during the Wednesday patient luncheons at the Institute. “Even though we’re separate organizations, we partner with the Institute so that the experience meshes,” she said.

According to Judy Taylor Holland, community outreach coordinator at the Institute, Melissa has matched the experience successfully. “Melissa is far more than a property manager. Her devotion to our patients and their comfort is demonstrated in the many small and large deeds she takes on for our patients,” Judy said. “She has accompanied many who have needed a trip to the grocery store for supplies in helping to set up their new home. Melissa is known to offer extra activities for patients and their families like game nights, art walks and special dinners. Most recently, she cooked Thanksgiving dinner for 40 residents of Third & Main, knowing that they would be away from home, family and friends during the holiday. Christmas will be a repeat with her adding toys for the children collected through her efforts with the community and Toys for Tots.”

Judy went on to say, “Wednesday patient lunches always include a patient testimonial about the Third & Main experience. By the time these individuals leave our Institute, Melissa has found a place in their hearts that will last for a very long time.”

There are many patients who consider Melissa their friend and stay in touch with her, including Scott Drosos. He has invited Melissa and many of the other friends he made while at the Institute to attend his wedding next April. “I was single, going through cancer alone. If it wasn’t for Melissa I would never have gotten as involved as I did and met so many people and made so many friends. That’s what made the difference for me.”

Recovery Room Renovation Is Underway

From staff

IMG_2803_0.JPG
Soon the pediatric recovery room will have a new look. This is a “before” photo.

Thanks to philanthropic support, we are renovating our Pediatric Recovery Room to reflect the exceptional level of care we provide. The room is a vital bridge in the treatment continuum, and the more we can offer in the way of a soothing, peaceful environment, the faster our patients will recover. We will transform the room into a space that provides optimal comfort and privacy for our precious children and their families. The renovations will dramatically improve privacy and comfort, with soothing colors, a more dynamic layout and visual attractions such as LED lighting, video screens and other technology.

“We’re very grateful to our generous donors for their gifts that are making the renovation possible,” said Stuart Klein, executive director.

Golf Wrap-Up

By Judy Taylor Holland, co-chair

Bright and early on Monday morning, November 14, 162 eager golfers teed off on both the Slammer & Squire and King & Bear courses located within the World Golf Village, St. Augustine, Fla. This 12th year for the golf tournament is thankfully a wrap although it was not without a major interruption. 

PGFC16-Kleins-Fryefield-Dagan_0.JPG
One foursome among many (l-r) Barbara Fryefield, Cathy Klein, Stuart Klein, Dr. Roi Dagan

On Friday, October 7th, the weekend of the planned tournament date, Jacksonville was in the  pathway of Hurricane Matthew. Luckily we were spared a direct hit, and while some flooding and wind damage occurred along the coast, our facility made it through just fine. This was the first time in the history of the tournament that weather was a critical factor and we might not be able to execute the tournament as planned. How could we complete 2016, the year we would celebrate the 10-year anniversary of the Institute, without the much-anticipated golf tournament?

After some intense debate and conversations with our sponsors, the 12th Annual Play Golf. Fight Cancer.® Classic was rescheduled. Unlike the previous year where a dinner preceded golf on the night before, it would be a one-day event of golf, silent auction and recognition of our 10-year anniversary.

PGFC16-playercelebrates_0.JPG
Celebrating a good shot.

During the awards reception following play, Robert Nelson, a proton alum, shared his experience as a prostate cancer survivor. Jeff Prosser, 1010XL sports radio and a graduate of the University of Florida, generously volunteered his time to become our master of ceremonies for the afternoon. There was plenty of food and fun stories of the morning on the greens. Obviously, it was pretty exciting to shoot a golf ball with an air cannon 280 – 320 yards for an opportunity to win a free vacation trip for closest to the pin.

The Play Golf. Fight Cancer. Classic was created over a decade ago specifically to fund the continuous research that is being conducted by the medical staff. Happily, the 2016 tournament turned out to be a banner year with net earnings of over $200,000 dedicated to our clinical research program.

PGFC16-golfballlauncher_0.JPG
Taking aim with an air cannon golf ball launcher.

We would like to thank and recognize our anniversary sponsors, Dot Decimal, IBA and the Shepherd Agency. Not only have they contributed to this enjoyable event, they have also helped us become the world-leading proton center we are today. Thanks also to the many other supporting and dedicated sponsors and a hard-working and talented golf committee: Stuart Klein, Dr. Nancy Mendenhall, Melissa Burhans, Molly Dworkin, Jenna Bryan Hobkirk, Bradlee Robbert, Nancy Seely (co-chair), Jason Smith, Melissa Spearman, Ashley Williams, Buzzy Northen and Laura Press.

Executive Director Message

StuartKlein.png

As we prepare for Thanksgiving and the holidays that follow, we pause and reflect on the many blessings that we enjoy.

In my case, I am thankful to be part of an effort that improves the lives of others. I hear extraordinary stories every day about the path our patients endured after their diagnosis as well as the uplifting stories of alumni who are able to continue living their lives to the fullest. I’m thankful for our patients and alumni whose commitment to a cancer-free future is a true inspiration. I’m thankful for our wonderful staff and volunteers who selflessly work daily miracles. And last but certainly not least, I’m thankful for our supporters in our community and throughout the world that help spread the word about the power of proton therapy. Their generosity provides resources and donations that support the research and treatment performed every day at UF Health Proton Therapy Institute.

Through our collective efforts, the UF Health Proton Therapy Institute has been a welcoming place for the past 10 years where those diagnosed with cancer can receive the treatment they need and a hope for a bright future. Again, my heartfelt thanks and wishes for a wonderful start to the holiday season.

Stuart L. Klein

Survivor Spotlight: Peter Lowry

By BeckyLynn Schroeder

As a registered nurse, Peter Lowry knew his symptoms meant something was wrong with his liver.  He never expected to hear that the liver problem was actually caused by a tumor in his pancreas blocking the biliary duct. Peter first underwent surgery, but because of the location of the tumor it could not be removed entirely. His surgeon gave him months to live. But Peter sought a second opinion, which led him to a clinical trial conducted by Dr. R. Charles Nichols, Jr., associate professor of radiation oncology at the UF Health Proton Therapy Institute. Peter became one of the first pancreatic cancer patients at the Institute to have an aggressive treatment combination of proton therapy and chemotherapy. Peter’s pancreatic cancer was already at a stage three and classified as “incurable,” however he was able to tolerate the amount of radiation needed to kill the cancer cells because of the targeted precision of the proton beam that spared healthy surrounding tissues. Today, Peter is living without any detectable cancer, has celebrated one more year of life and looks forward to many more.

Hear more of Peter’s story in this video.

Survivor Spotlight: Nancy Baker

By Theresa Edwards Makrush

Nancy Baker 1_carriage_0.jpgIt started with a nagging cough. Conscientious about her health, Nancy Baker sought medical advice, and for three years her cough was treated as an allergy symptom. She eventually went to a pulmonologist and discovered in 2014 that she had lung cancer. A tumor was located in the center of her chest – in her lung and wrapped around her heart. It was not possible to surgically remove the tumor because of its location, so chemotherapy with radiation therapy was recommended as the course of treatment. Nancy had worked as an emergency room nurse at both UF Health and Baptist Health, and she understood the potential side effects of treatment. “I just knew I didn’t want traditional radiation,” she said.

She met with Dr. Bradford Hoppe, associate professor of radiation oncology at UF Health Proton Therapy Institute, who believed proton therapy could help her. She said, “Dr. Hoppe fought with the insurance companies and was turned down three times. Then a clinical trial came up.” It was a cooperative group trial being done at cancer centers across the country and it would mean the treatment would only be available through a randomized flip of the coin. Nancy enrolled in the trial and was randomly selected to receive proton therapy.

“It was a blessing to have the clinical trial,” said Nancy. While she was on treatment she said her quality of life was not really affected very much. She had some tiredness and some skin discoloration at the proton entry point. She received chemotherapy and noticed that others at the infusion center being treated for lung cancer were having a tougher time. “I saw other people and I realized I wasn’t doing so bad.”

Nancy said the doctors and staff made her feel at ease during a very trying time. “These people treat you like you’re royalty. People know your name when you come for your appointment. Even two years later, they know who I am. If I had to have cancer, this is the place to have it.”

Not too long after she completed treatment, she resumed her normal active lifestyle: golfing, tennis and bowling. Now, two years later, she is still going strong. She said, “I can’t thank UF Health and Dr. Hoppe enough for saving my life.”

Paying it forward

By BeckyLynn Schroeder

Cancer Free. That is the hope of many people that walk through our doors every day. Thanks to the support of many, the UF Health Proton Therapy Institute continues to advance cancer treatment and research that changes lives for the better.

November 15 is recognized as National Philanthropy Day® and we’d like to celebrate by thanking the many cancer survivors, family, friends and others who support our mission to offer cancer patients the best chance of cure with the least chance of side effects.

Every philanthropic act – big or small – has an enormous impact on the program and spirit at the UF Health Proton Therapy Institute. Some of our young alumni have been busy “paying it forward,” giving to others in response to kindness shown to them, to spread the hope of a cancer-free future:

Duff.jpg

Rebecca Duff came to the UF Health Proton Therapy Institute from Scotland. She was diagnosed with an ependymoma brain tumor at 20 years old. Prior to her diagnosis, Rebecca and some friends formed a group and began organizing fundraising activities for a friend receiving cancer treatments. When Rebecca found out about her brain tumor, the group was keen to continue the fundraising efforts to give back.

“I wanted to do something to give back to the UF Health Proton Therapy Institute because it was a fantastic place that made me feel safe and welcome while undergoing treatment,” Rebecca recalls.

Exploring her adventurous side, Rebecca and her friends had been raising money through various activities, including skydiving, to give back. They also created and sold wrist bands and held a coffee event. Earlier this year, Rebecca handed over a big check for £650 (or approximately $805 US dollars) representing the money she had raised to help others like her receive cancer treatment.

Rebecca and her group of friends are continuing their passion to help people who are going through similar experiences and will continue to hold fundraising events, including a masquerade ball and ladies’ night event.

 

Socks.jpg

Jake Teitelbaum was diagnosed with refractory Hodgkin’s lymphoma at 21. He battled through rounds of chemotherapy and a stem cell transplant then, shortly after his 22nd birthday, Jake underwent proton therapy. Throughout treatment, Jake met other people dealing with cancer that did not have as many resources as he did. While a chronic illness takes a toll on a person’s body, Jake believes it shouldn’t also have a debilitating impact economically. He came up with an idea – a sock business called Resilience – that will help fund cancer treatment expenses for people in need. A portion of the proceeds goes directly to a specific financially-strapped patient Jake has partnered with. Resilience was officially launched in September of this year and has already raised more than $800 for Resilience’s first recipient, a 14-year-old boy who has non-Hodgkin’s lymphoma. Jake says that he is excited to launch another custom sock design and will announce the second recipient this month. As Resilience grows, Jake also plans to branch out and help people with other illnesses in addition to cancer.

As Jake says, “The Resilience project is about fighting to become stronger. Stronger in body. Stronger in mind. Stronger in spirit. It’s about embracing terrible circumstances to learn and grow as a person. It’s about sending support, love, and of course, awesome socks, to someone who needs it.”

 

Nia.jpg

Nia Taylor-Jones, a 13-year-old from Wales in the United Kingdom, stopped by for a visit the week before Halloween to deliver sacks brimming with candy. She and her family were vacationing in Orlando and on their last day made a special trip to Jacksonville to deliver the treats along with a plaque of appreciation. She remembered the fun Halloween activities for children while she was on treatment for an orbital tumor in 2012. Now, four years later, she wanted to give something back and show her appreciation for all the UF Health Proton Therapy Institute has meant to her.

Nia, her grandmother Lynette Goddard, and her uncle James Taylor-Goddard presented a plaque to Daniel Indelicato, MD, associate professor of radiation oncology at UF Health Proton Therapy Institute and director of the pediatric program, Amy Sapp, RN, director of pediatric nursing, and Kimberly Ely, child life specialist. The plaque reads: “Nia Taylor-Jones & her family would like to dedicate this with love & affection to our friends at the Jacksonville Proton Therapy Institute for making a difficult time so easy to deal with.”

To learn more about how to support the UF Health Proton Therapy Institute, please visit: www.floridaproton.org/news/give-support.

2016 Excellence Award Honoree: Roscoe Barksdale

By Theresa Edwards Makrush

0148_10yrAnnivDinner_UFProton_-¬LauraEvans_1.jpg
(l-r) Stuart Klein, Executive Director; Roscoe Barksdale; Dr. Michael Good, Chairman, UF Health Proton Therapy Institute Board of Directors

The UF Health Proton Therapy Institute presented its 2016 Excellence Award to Roscoe Barksdale during a ceremony earlier this month. The award was established last year to recognize someone within the proton family, for example, employees, vendors, philanthropists or volunteers, who has made a significant contribution to the culture of excellence and patient care at the Institute.

Roscoe joined the Institute several years ago as a G4S private security guard working Monday through Friday from 6 a.m. to 2 p.m. Since day one, he has gone above and beyond the call of duty and demonstrated a commitment to excellence that is exemplary.

He doesn’t stop with his duties of keeping patients and staff safe, but also looks out for the welfare of each person. In typical Roscoe fashion, he downplayed his contribution by saying, “I basically fit in and try to be of service if needed.” Executive Director Stuart Klein in his remarks said, “I can tell you from personal experience that Roscoe more than fits it. He has become, in many ways, the face of the UF Health Proton Therapy Institute. We conduct exit interviews with nearly every patient, and one of the first comments patients make is how Roscoe greeted them every day and made them feel welcome.”

Roscoe is a people person. He goes out of his way to smile and chat with everyone. He said helping people get in a good mood goes a long way to how they do with their treatment. Roscoe doesn’t like to see sad faces so he does what he can to be cheerful to help motivate patients to do what they have to do to get well.

As one patient wrote: “Dear Roscoe: You are one of the reasons why I have found Florida Proton so comforting. Wishing you the best.”

Pages

About This Newsletter

The Precision Newsletter is an electronic-only publication that is distributed by email. Each issue is sent monthly to patients, alumni patients and friends of the University of Florida Health Proton Therapy Institute. As the official newsletter of the Institute, the content is compiled and prepared by our communications representative and approved by the editor Stuart Klein, executive director of UF Health Proton Therapy Institute. Special bulletin newsletters may occasionally be prepared when timely topics and new developments in proton therapy occur. If you would like to send a Letter to the Editor, please click here.

 

Keep In Touch

It is easy to stay in touch with us online at floridaproton.org . Look at the top right corner of the homepage for Facebook , Twitter and YouTube icons, click and join us in the social media conversation. Also on the right side of the homepage there is a button for VTOC Patient Portal . Click here to open your secure account, view your records, complete clinical trial questionnaires and communicate with your nurse case manager.

 

Knowing how you are feeling during and after treatment is essential to providing you the best care possible and contributes to the care of future patients.