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.

Patient Spotlight: Beth Semikin

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By Theresa Edwards Makrush

Encouragement from her family and friends led Beth Semikin to begin a blog about her experience dealing with a rare and complicated diagnosis of sarcoma. They thought her sense of humor was worth sharing with others. “I think if you can see the funny side of things, it helps to cope,” said Beth whose blog is cheekily named Tumour Has It. It has caught the attention of many cancer patients and news organizations including The Daily Mirror and ActionNews Jax.

She discovered writing about her cancer gave her a way to overcome the fear. “It was something I could do to normalize it,” said Beth in a recent interview as she prepared for her first of nine proton therapy treatments following weeks of conventional radiation at UF Health Proton Therapy Institute. 

Beth, who is a 22-year-old physics student at Imperial College in London, said she sees the blog as a way to raise awareness about sarcoma. “There’s a lot of misdiagnosis. Symptoms are overlooked and there’s not much awareness in the general public and the medical community about it,” she said. Her own symptoms began in December 2014 as a tingling sensation in her leg that over a few-week period became very painful. “If you have unexplained symptoms, nerve pain, a lot of trouble walking, it [sarcoma] could be something to consider,” she said.

She describes her time in Jacksonville as a “radiation vacation.”

“It’s gone really quickly. No real symptoms from the radiation. I feel here there’s such a feeling of safety, like I’m cocooned,” said Beth. Being with doctors she trusts and radiation therapists who have become friends eases the initial fear and uncertainty of travelling to the U.S. for treatment.

A friend of hers at home in the U.K. has started a fund to raise money for Sarcoma U.K., a nonprofit organization that provides information and support for sarcoma patients and their families and funds research. So far they have raised nearly £5,000 for the organization through the Beth Semikin Sarcoma Initiative.

You can subscribe to Beth’s blog at http://tumourhasit.co.uk/, and follow her on Facebook.com/TumourHasIt and Twitter @TumourHasIt.

Meet Molly Dworkin, Director of Development

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By Theresa Edwards Makrush

We are pleased to introduce Molly Dworkin, director of development at UF Health Proton Therapy Institute. She hit the ground running last fall just in time for our annual Play Golf. Fight Cancer.® Classic and she has kept the momentum going. Responsible for securing philanthropic gifts and donations to further the clinical and research programs at the institute, Molly is building relationships with proton “alumni,” proton friends and others in the community. Among her recent initiatives are an annual fund appeal and a campaign to raise funds to renovate the pediatric recovery and infusion room. 

“I am so energized by the positive spirit of the patients and caregivers as well as the physicians and staff,” said Molly. “Knowing that the good we do today will benefit future patients is a tremendous motivation. I look forward to helping secure that future.”

The Pediatric Recovery and Infusion Room Renovation Campaign will transform the area to reflect the exceptional level of care we provide. The proposed renovations will incorporate soothing colors and child-friendly elements, a more dynamic layout and visual attractions such as LED lighting, video screens and other technology, providing optimal comfort and privacy for our youngest patients and their families.

If you are interested in supporting this cause or other aspects of clinical care or research, please contact Molly at (904) 588-1519 or mdworkin@floridaproton.org.

At the Proton Centre

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A poem by Ruth Munglani

Editor’s note: At a recent Wednesday patient luncheon, 22-year-old Ruth Munglani shared a poem she wrote to commemorate her proton graduation day. She had spent several months in Jacksonville having proton therapy for Ewing sarcoma and has returned to her home in the U.K. We thank Ruth for the opportunity to publish her work.

 

When lying asleep in the depths of my chemo,

The doctor popped into my room.

She beamed at me and patted my shoulder,

‘You’ll be going to America soon.’

 

‘America? Why would I go there?’ I replied,

I looked at her with dismay.

My friends, my family, my whole life was here,

All I wanted to do was stay.

 

The doctor explained to my chemo-addled brain

About protons and all of that.

To be honest, I wasn’t really listening to her,

I got distracted by the fact

 

That America was so very far away;

Across an entire ocean.

And that I would have to spend a few months there

Getting some form of radiation.

 

The day for the flight dawned bright and early,

I woke up filled with dread.

More treatment abroad was not appealing,

I pulled the blankets over my head.

 

The first few days were stressful for my mum;

She cried on the I-95.

The speed limit, it appeared; merely a suggestion,

We were glad to get home alive.

 

But the protons really have been fine.

I hop up on the bed and relax,

Listen to the chatter and the music,

What would make it perfect: some snacks.

 

We have enjoyed our down time too,

Lots of trips to the beach and the sea.

One thing though I am looking forward to:

A good old English cup of tea.

 

I’ve made some really good friends since I’ve been here;

People who smile and care,

Who stop and ask ‘How’s your day going?’

A sense of community is shared.

 

There have been many memorable moments,

Expressions like ‘Happy Friday’ and ‘Y’all’,

But mostly I’ll remember the kindness of everyone

And the little things, however small.

 

And now at last it is ending.

I find myself sad to go home.

It has felt like a holiday being here,

Full of friends, never alone.

 

So thank you to all who have made it

A truly wonderful experience for us.

Treatment has never been so positive.

I think you’ve got it sussed.

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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.