Survivor Spotlight: Lauren Foster

Teen proton alum Lauren Foster and her family returned to Jacksonville to reconnect and offer encouragement

By Theresa Edwards Makrush

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A sweet smile lit up 14-year-old proton alum Lauren Foster's face as she talked about her plans for the future. "Going through treatment made me want to go into nursing. Knowing that you're helping somebody get better makes you feel quite happy," she said softly.

Her parents' smiles beamed brightly as they added, "She's taking all the subjects that will hopefully get her into university to do nursing," said mom Emma Allsop. While dad Steve Foster remarked, "Lauren choosing this path is unusual since she does not like the sight of blood, has a fear of needles and doesn't like to see medical procedures even on TV. Her choice shows just how determined she is and has the strength of direction for nursing."

It's the same strength and determination Lauren has displayed during the last four years as she has dealt with treatment for a rare tumor called rhabdomyosarcoma, a type of tumor that occurs in soft tissue. Because of her age and the location of the tumor on the muscle at the back of her palate, she was not a candidate for surgery, and her physicians in the United Kingdom recommended her for proton therapy combined with chemotherapy.

On March 17, four years to the day when they first landed in America for Lauren's proton therapy, Lauren, her parents and her sister, Holly, returned to UF Health Proton Therapy Institute for a follow-up visit with Dr. Danny Indelicato. "We really looked forward to thanking the staff for what they've done for Lauren," said her dad Steve. Lauren added, "I'm looking forward to experiencing everything in America being well."

It was a much different experience than when they were here originally. The fear of the unknown, never having been in the United States before, and being away from their support system of friends and family for cancer treatment was overwhelming at first. 
“The culture of things. Knowing more about the way of life would have set our minds more at ease,” said Emma. After getting over the uncertainty of driving on the right side of the road, adjusting to the way Americans eat and discovering how friendly all the people were, the family began to settle in. 

 Initial fears about the medical facilities and treatment were relieved once they arrived. At Wolfson Children’s Hospital they were pleasantly surprised to have a private room. This allowed the family to stay with Lauren in comfort as she had procedures to implant fiducial markers to aid in positioning for daily proton therapy and a port for her chemotherapy. At the Institute, the family went on an orientation tour prior to Lauren’s first treatment. She was able to see, touch and feel what it was like to lie on the treatment table, allowing her to overcome her anxiety and have her treatment without daily anesthesia. 

Lauren said that proton therapy was not painful. “You don’t feel anything. It’s not as scary as you think it is” she said. “After you’ve done it once, you can do it again,” Lauren said.

They also wanted to encourage others who are facing a similar journey. “No one wants this to happen to their child. But that’s the good that can come out of it. You can share and pass along your experience to help others,” said Steve. Emma agreed. “We would love to have met up with people who were two or three years out. So many questions you want to ask and some you don’t want to ask the doctors,” she said. 

The family was pleasantly surprised by the friendliness of everyone, even people who were complete strangers. Steve told the story of how the entire staff of the hotel where they stayed during the nine-and-a-half-week treatment became like family. As an example, every morning they had breakfast in the hotel dining room and the staff noticed how much the youngest member of the family, Holly, loved to make her own waffles every day. At the end of their stay, the staff presented the gift of an industrial waffle maker to the family. Later as the family prepared to leave for the airport, the entire hotel staff gathered in the lobby to wish them well, cheering and applauding.

An act of kindness in the middle of a big-box store remains a vivid memory for Steve. While Lauren was being treated, she was quite sick and it was a struggle to do many outside activities. One day the family was shopping for some necessities and Lauren became fatigued. Steve found a seat in the middle of the store for Lauren to rest. A woman who was shopping noticed Lauren and asked about her condition. After learning from Steve what was happening, the woman asked if she could say a prayer for Lauren. “I said yes thinking that she would go home and say a prayer later. But she got down on her knee in the store and held Lauren’s hand and said a prayer right there. People just continued shopping and walked by without a second thought.” The fact that the woman cared enough to stop and show her concern was surprising enough. Even more surprising was that people didn’t stop and stare and make a spectacle of what was happening. 

They are making new memories on their return trip. Reconnecting with the people and places in Jacksonville they remember fondly and charting new territory as they visit Orlando and the many theme parks. And each family member will get their favorite taste of America while they’re here: Olive Garden for Emma, Chick-fil-a for Steve and Holly and Denny’s for Lauren.

Today, Lauren is cancer-free. She fills her days with school, sports like gymnastics, trampoline, and badminton, and watching her favorite TV shows The Big Bang Theory and Charmed, which she and her family came to know and love while in America.

IBA Proton Therapy Pioneer

By Theresa Edwards Makrush

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IBA, the world’s leading manufacturer of proton therapy systems, presented the IBA Proton Therapy Pioneer award to UF Health Proton Therapy Institute during the annual gathering of the IBA global user group this month in Trento, Italy. The award recognizes institutions and teams that have played an extraordinary role in the development of proton therapy’s use as a powerful tool in the treatment of cancers for their patients.

Accepting the award on behalf of the Institute were Zuofeng Li, DSc, director of physics, and Daniel J. Indelicato, MD, director of the pediatric program and William and Joan Mendenhall Endowed Chair of Pediatric Radiotherapy.

The award was presented by IBA Founder and Chief Research Officer Yves Jongen. In his remarks, Jongen acknowledged the contributions of the Institute to the field of proton therapy and radiation oncology.

“In the 10 years that UF Health Proton Therapy Institute has been treating patients, the team has been a role model for the proton therapy community throughout the world. Not only has the team treated one of the largest volumes of patients with the highest standard of quality, including the most pediatric patients of any other center in the world, the team also significantly advanced the science by publishing more valuable research results than all or most other facilities in the world. Dr. Nancy Mendenhall’s launch of a proton therapy journal has been another great gift to the proton therapy community,” said Jongen.

Since opening in August 2006, the Institute has treated more than 6,200 cancer patients, including more than 1,000 children. The clinical research program has generated 127 published articles in medical journals including the International Journal of Radiation Oncology Biology Physics, published by the American Society for Radiation Oncology (ASTRO); Cancer; Oncology; American Journal of Clinical Oncology; Journal of Urology; and Acta Oncologica. UF Health Proton Therapy Institute Medical Director Nancy Mendenhall, MD, spearheaded the effort to create the International Journal of Particle Therapy that publishes research done in the field of particle therapy including proton therapy and carbon ion therapy.

National Doctors Day

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March 30 is National Doctors Day, a day set aside to show our appreciation for the dedication, professionalism and compassion physicians commit to healing patients. The radiation oncologists at UF Health Proton Therapy Institute exemplify all that is best about the medical profession. Their leadership in advancing the field of radiation oncology through proton therapy is improving the health outcomes of thousands of cancer patients today and in the future.

A simple way to show appreciation is to tell others about your experience with your physician. You may wish to share your experience with a review on our Facebook page or Google Plus page or take a brief nine-question survey on healthgrades.com. Click on the physician's name below to launch the survey:

Julie A. Bradley, MD

Curtis M. Bryant, MD, MPH

Roi Dagan, MD, MS

Randal H. Henderson, MD, MBA

Bradford S. Hoppe, MD, MPH

Daniel J. Indelicato, MD

Nancy Price Mendenhall, MD

William Mendenhall, MD

R. Charles Nichols, Jr., MD

Ronny Rotondo, MD, CM, FRCPC

Michael Rutenburg, MD, PhD

Up-close encounter with the Jacksonville Armada Football Club

By Theresa Edwards Makrush

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The Jacksonville Armada Football Club, the city’s professional soccer team, is preparing for its second season in the North American Soccer League (NASL). Regular season matches begin on April 10, but until then several pre-season friendlies give the team and fans a chance to warm up. Thanks to the generous donation of tickets by team owner and CEO Mark Frisch, the crowd at a recent pre-season game included approximately 150 patients, caregivers, medical and administrative staff members of the UF Health Proton Therapy Institute.

The event at Community First Park in the Baseball Grounds of Jacksonville was even more special for seven pediatric patients because they were invited to participate in on-field ceremonies. Six of the children took the field with the starting opposing team players as part of The Starting XI, a long-standing tradition in the English Premier League that has spread to other soccer leagues including the NASL. Each of the 11 starting players walks hand-in-hand onto the field with a “match mascot,” a child who aspires to be a professional player. In this way, the players pass along their love of the game to the next generation. One additional child had the honor of raising the American flag for the National Anthem. The children visited with the players pre- and post-game, posed for photos with them and got autographs.

Friends and family in the stands cheered and held up hand-made posters in support of the children and the team. The posters were part of the group art project at the art-in-medicine table in the days leading up to the match.

This up-close encounter is just one of several activities over the past year that the Armada has made available to the Institute’s patients. Last fall, the Armada provided complimentary tickets to a match and to a movie night at the stadium. They also sponsored holiday-themed mugs and hot chocolate at a gingerbread-themed family fun night last December hosted by the Zane Beadles Parade Foundation.

Message from Stuart Klein, Executive Director

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Something we invite all of our patients and their caregivers to do is reach out for support. Aside from the medical care patients receive at our facility, we offer many ways for them to meet other patients and their caregivers in organized meetings and informal get-togethers. Often it is the spontaneous connections that patients make with one another in the lobby, at the Wednesday luncheon, or at their temporary housing complex, for example, that can have an enormous positive influence. Whatever your personal style may be, we hope that you will not hesitate to ask for support throughout your medical journey.

Sincerely,

Stuart L. Klein

Executive Director

Patient Spotlight: Wayne Humphreys

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Wendy made a “graduation day” card for Wayne when he completed his last treatment.

By Theresa Edwards Makrush

A big-hearted pony named Bouncer and his equally big-hearted owner Wayne Humphreys had lots of love to give — in the form of carriage rides — to pediatric patients and their parents. In return, the children gave extra treats and affection to Bouncer and a positive boost to fellow patient Wayne. “When you’re in a strange place for eight, nine, 10 weeks, to reach out to people is so important,” said Wayne. “It was equally good for me as them.”

Wayne, a retired U.S. Navy Captain who lives in Virginia and in the past had wintered in Florida, was at the UF Health Proton Therapy Institute for prostate cancer treatment last fall. His network of Naval Academy alumni, 1964 Cares, pointed him in the direction of proton therapy. A good friend in the group, a retired orthopedic surgeon, told him he needed to look into proton therapy and sent him a list of all the proton therapy facilities in the U.S. 

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One of many carriage rides Bouncer and Wayne gave Wendy

Wayne was encouraged when he saw UF on the list. His late wife Sybil Humphreys and a good friend from Kentucky both had received excellent care at UF Health Shands Hospital in Gainesville. He contacted the Proton Therapy Institute and within a day or two had a packet of information. He said the first contact with the intake department re-emphasized his resolve to have proton therapy at the facility.

 

“It’s not enough to have world-class facilities, you have to have world-class patient services,” said Wayne. “I had high expectations and my expectations were exceeded.”

Wayne stayed at 3rd and Main apartments while in Jacksonville for proton therapy. He brought his pony and three dogs. The pony stayed at Skyway Farm about 15 minutes from the Institute. “I was going out about four or five times a week to drive Bouncer. Most of my appointments were in the early morning so you had all the rest of the day to do things.” All during treatment he felt well enough to carry on his normal activities. He participated in the lunches and dinners arranged by patient services director Bradlee Robbert and other activities with fellow patients. “You see the kids and how going through cancer breaks their hearts. One day I thought, ‘Gee, I could give them rides in the carriage,’” said Wayne.

The first child who rode on the carriage was Wendy Anthony, a 12-year-old girl from Canada having proton therapy for a brain tumor. She and her father, Dave, had become good friends with Wayne as neighbors at 3rd and Main and as fellow patients. She encouraged the other children at the Institute to give it a try, and gradually over the next four weeks up to six children would drive out to Skyway Farm twice a week to visit with Bouncer and go for a ride in the carriage. 

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Bouncer, Wendy and her father Dave

“One day there were six or seven children there. I gave them a few lessons explaining the do's and dont's of handling horses,” said Wayne. “Then I told them about Bouncer’s accomplishments. Bouncer is the first U.S. horse or pony to win a Gold medal in international combined driving competition when he won in England in 2005. He was the smallest pony in the competition. Bouncer won because he had the biggest heart and he set his mind to it. We can treat our cancer and win the same way, if we set our minds to it,” he said.

Read more about Bouncer’s and Wayne’s campaign to raise awareness and Federal funding for pancreatic cancer research in honor of Wayne’s late wife Sybil who passed away due to pancreatic cancer in 2011.

Meet Stephanie Saman, Adult Oncology Social Worker


Saman_Stephanie-9727.jpgWe are pleased to welcome to our staff adult oncology social worker Stephanie Saman. Her role is to work with adult patients and families and encourage them to become involved in our community of mutual concern and support. She develops and facilitates support groups for all adult patients as well as provides individual counseling where she emphasizes the importance of human relationships. 

As part of the care team, she consults and collaborates with physicians, nurses and others to ensure the psychosocial needs of patients are met.

Ms. Saman empowers patients and their families to function optimally throughout the treatment process by assisting them in accessing the health care system and community resources available. She engages the community to cultivate enhanced support and resources for adult patients. 

Ms. Saman has a Masters in Social Work from Florida State University and is a member of the National Association of Social Workers and the Association of Oncology Social Work.

- compiled by Theresa Edwards Makrush

Finishing breast cancer is the goal

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Juana Gifford and Stuart Klein were two of many booth volunteers.

By Theresa Edwards Makrush

Jacksonville native, journalist and philanthropist Donna Deegan founded the first U.S. marathon dedicated to raise funds and awareness for breast cancer treatment and research. Held each February in Jacksonville Beach since 2008, the 26.2 with Donna: The National Marathon to Finish Breast Cancer has become a staple of the annual events calendar for runners and spectators alike. 

UF Health Proton Therapy Institute participated in the Donna Expo at the Prime Osborn Convention Center in downtown Jacksonville on February 12 and 13. Volunteers from the Institute’s staff distributed information about proton therapy for breast cancer treatment. It was a great opportunity to spread the word about proton therapy and to support the cause to finish breast cancer.

Message from the Executive Director

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We are embarking on an exciting period in our history. This year we will mark the 10th anniversary of the first treatment delivered to a patient. We will publish updated results of our proton therapy clinical trials. And we will begin construction of a new treatment room, expanding our treatment capacity and upgrading our technology. These milestones represent our commitment to treating and curing cancer in a way that preserves an excellent quality of life for our “alumni.” I am excited to share this news with you and encourage you to spread the word by forwarding this message to a friend. Wishing you all the best in 2016 and beyond.

 

Sincerely,

Stuart Klein

 

Expansion, upgrades at UF Health Proton Therapy Institute announced

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By Theresa Edwards Makrush

The UF Health Proton Therapy Institute is expanding its facility to increase the number of cancer patients and the types of cancer it is able to treat. The estimated $39 million project will include system upgrades that will improve treatment efficiency and technology. 

The centerpiece of the multiphase project is the addition of a compact, single-room treatment system. The 10,000-square-foot expansion includes both an accelerator, used to speed up the protons, and a treatment gantry equipped with pencil beam scanning – an advanced delivery technique. Currently, the 98,000-square-foot facility has four treatment rooms – three equipped with rotating gantries and one fixed beam room – all powered by one proton accelerator called a cyclotron. When the addition is completed, the facility will have two accelerators, five treatment rooms – four gantries and one fixed beam room – and will increase patient capacity by approximately 25 percent.

“When the project is completed, UF Health Proton Therapy Institute will have one of the most versatile proton therapy systems in the world,” said executive director Stuart L. Klein, MHA. “Each delivery technique – double scattering, uniform scanning and pencil beam scanning – will enable physicians to use the optimal treatment delivery customized for each patient.”

The first phase of the project is underway and includes upgrades to the original system, which will be completed by June 2016. Funded in part by a $5.8 million budget allocation by the Florida Legislature, the first phase includes adding rolling floors under the treatment tables in two of the gantries, a new imaging system and a new treatment planning system. These updates will enhance efficiency, patient and staff safety, and treatment accuracy. 

Phase two will encompass the expansion construction and installation of the single-room proton therapy system. Bids for the proton therapy system equipment, construction management and architectural design for the expansion have been issued and vendor selection is expected to take place in January 2016. The project is being managed by the University of Florida Planning, Design & Construction Department.

Phase three involves retrofitting one treatment gantry with a dedicated pencil beam scanning nozzle. Pencil beam scanning is an advanced form of proton therapy delivery using a thin beam of protons. Similar to the way one uses a pencil to color in a shape with back and forth strokes, pencil beam scanning uses back and forth strokes calibrated to the exact shape, size and depth of the treatment area. Pencil beam scanning will offer clinical advantages for treating certain kinds of cancer.

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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.