Specialized Care for Brain Tumors

When it comes to treating rare and challenging brain tumors or neurologic disorders, patients are often referred to the UF Health Proton Therapy Institute and UF Health Jacksonville’s Skull Base Center. Here, a team of highly trained and experienced specialists collaborate to treat patients. The combination of advanced technology and doctors who are surgeons, radiation oncologists, medical oncologists and radiologists who have specific training in the brain and central nervous system makes the center a unique medical resource in the region. Ronny Rotondo, MD, CM, FRCPC, who directs the proton therapy brain tumor program, and Daryoush Tavanaiepour, MD, who directs the Skull Base Center, recently sat down for an interview about skull base tumors.

 

 

Proton Therapy Nurses Inspire, Innovate and Influence

May 6-12 is National Nurses Week, and the UF Health Proton Therapy Institute has a team of over 20 nurses who serve as case managers, nurse practitioners and researchers. Gail Sarto, RN, BSN, OCN, directs the adult nursing team and Amy Sapp, RN, directs the pediatric nursing team.

According to Ms. Sarto, patient care begins with a holistic approach. Each patient’s treatment is individualized, and a customized plan begins even before the first appointment when the nurse case manager is in touch to gather information. “This makes it possible for the first visit with the medical team to be as comprehensive as possible and for the patient to feel like we know them as soon as they arrive,” she said. In order for the most appropriate treatment plan to be developed, sometimes patients need testing to assure the cancer is properly staged, and nurses assist with testing.

The nurse case manager follows the patient through treatment and provides relief for symptoms and emotional support. “Having this new diagnosis of cancer is challenging, and frequently patients and their families require a lot of assistance with understanding the disease process and getting needed support,” said Ms. Sarto. “We work closely with our social workers to provide patients emotional and physical support. We also work closely with the billing department to assist with insurance issues that require clinical input.”

As patients transition to survivorship following treatment, the nurse case manager provides ongoing support to patients and families. With many patients who live outside of Jacksonville, coordination of care following treatment requires significant resources and support from the proton therapy nurses. “In survivorship, patients may need referrals or interventions. We work with the patient and their local resources to assure the patient’s needs are met,” said Ms. Sarto.

Clinical research is a unique focus of the Institute and nurse case managers along with research nurses are essential in educating patients about clinical trials they may be eligible to participate in as well as gathering data about the treatments’ effects. “Our goal is to provide the best quality of care that is research based,” she said.

The Institute’s nursing philosophy starts with respect for each individual, regardless of background, and includes being a partner with the patient in their care. Ms. Sarto said, “Being part of the patient’s care team is a special privilege.”

Social Services and Child Life Staff Comfort Patients in Many Ways

The social services and child life team, from left: Heather Oakley, Kim Todd, Stephanie Saman, Jennifer Duncanson.

Clinical social workers and child life specialists across the nation have important roles in patient care. At the UF Health Proton Therapy Institute, we are fortunate to have two full-time clinical social workers and two child life specialists.

Heather Oakley, LCSW, OSW-C, is director of social services and is a pediatric oncology social worker. In addition to managing the social work and child life programs, she is responsible for assisting pediatric patients and their families with social, financial and psychological matters related to their diagnosis and treatment.

Stephanie Saman is an adult social worker and assists patients and their families with both practical and psychosocial needs. She facilitates various support groups for adult patients and their caregivers and connects patients and their families with essential public- and private-sector resources for additional support.

Kimberly Todd is a certified child life specialist who educates, prepares and supports children through difficult tests, procedures and treatment. Her goal is to ease anxiety that young patients may experience. She has developed model programs for proton therapy child life specialists and spearheaded the development and launch of the online teaching tool Proton U.

Jennifer Duncanson is a Go4TheGoal child life fellow who supports children through treatment, teaches coping skills through hands-on educational play, and helps patients and families adjust to daily treatment.

 

Proton Alums’ Generosity Means Family Fun for Our Youngest Patients

A group of families meet up for dinner and playtime on a Thursday. As the children play, the parents chat with each other about their day and what’s going on in their lives. After a few hours, it’s time to head home for the evening. As the parents gather their children, fond hugs and well wishes are exchanged with the promise to see each other soon.

This seemingly ordinary scenario happens every other Thursday at the UF Health Proton Therapy Institute. Hosted by the pediatric social services team, Family Fun Night, as the gathering is called, brings a sense of the ordinary back into the lives of families with a child who has a life-threatening tumor. Often it brings joy with visits from special guests from the Jacksonville community such as professional sports team members, zookeepers and their animals, or magicians and their tricks.

Family Fun Night is completely free for patients and their families thanks to the generosity of individuals who help fund the meals and activities.

For Marjorie and Barry Berg, supporting the children and families is a way to help others and to give back.

Marjorie and Barry Berg
Marjorie and Barry Berg

After a prostate cancer diagnosis in the spring of 2010, Barry consulted with different physicians and was not happy with the treatment options. He and Marjorie researched on the internet, found proton therapy and traveled to Jacksonville from their home in Palm Beach Gardens for a tour. They decided proton therapy was the best treatment choice, and he was treated that summer. “My results were great. I had no side effects, no issues,” said Barry.

“While I was being treated, at the same time they were in the early stages of treating children,” he said. “We got to see some of the families and children who were being treated. Seeing these little people with issues. That seemed much more difficult than what I had, even though we were going through the same treatment.”

Since then, the Bergs have made a point to provide an annual gift to the Institute. They recently stepped forward to fund the Family Fun Nights being hosted in June, to help the pediatric patients and families.

Said Barry, “A lot of the people who are treated for prostate cancer are older and retired. Fortunately I was able to go back to work following treatment and am still working. I feel very fortunate to be able to do that and fortunate to be able to share and help.”

Betty and Martin Edwards
Martin and Betty Edwards

For Betty and Martin Edwards, a desire to help the children and to make people feel welcome at the Institute and in their hometown of Jacksonville motivated them to support the pediatric program. Not only have they helped fund the pediatric recovery room renovation, they’ve also helped fund a Family Fun Night happening this month.

Martin was diagnosed with prostate cancer nine years ago. While he had several treatment options, he credits Betty with finding out about proton therapy. “She was talking to a neighbor who is a doctor at UF Health Jacksonville. He mentioned proton therapy and we looked into it. I became convinced that it would be a good choice for me,” Martin said.

“I have to say that everybody at the Institute was as friendly and hospitable as could be. In most medical settings it’s formal and sterile. This was just the opposite. Everyone was friendly and welcoming and made you feel at home. A relaxed atmosphere,” said Martin. As his treatment progressed Martin said he would go early just to sit and visit with people. He would share information with newcomers about what to expect during treatment and places to go and things to do around town. He wanted to make them feel welcome and became what he called a “mini ambassador” for the Institute.

But what really prompted the Edwards to make a philanthropic gift was Martin’s experience seeing the children who were on treatment. He vividly recalled watching a sedated child holding a teddy bear being wheeled down the hall on a gurney toward the treatment room. “I thought, ‘How unfair is this for this young child to have to go through this? It’s one thing for an older guy like me, but for a young child… .’ Later, I said to my wife, ‘If we ever get a chance to help out with that, we have to do it.’”

Betty said, “As a mother and counselor of children and families I firmly believe that anything that reduces their anxiety helps them feel better. That goes for the child AND the parents. When we heard about Family Fun Night we wanted to support it because it helps families take their minds off being sick, and needing treatment in a strange environment. We want to help families relax and focus on play and sharing experiences with other families facing similar situations.”

If you would like to support the pediatric program or Family Fun Night, contact Director of Development Lindsay Carter-Tidwell at lcartertidwell@floridaproton.org or (904) 588-1519.

Executive Director Message

 

StuartKlein.pngEven in tough circumstances, such as dealing with cancer, people have the remarkable capacity to adapt. We have a great team of professionals who help patients tap into their inner resilience. For those who move temporarily to Jacksonville for treatment, we provide practical advice such as where to find housing, grocery stores, pharmacies and even barber shops. To help patients ease their anxiety about treatment, we offer tours so they can see where treatment happens and understand what to expect. We have support groups and one-on-one counseling available so people can talk through their concerns and learn coping skills. And we have plenty of opportunities for people to mix and mingle and just forget about cancer for awhile. This aspect of our care is intentional to help make a positive difference in how patients experience proton therapy and in how they use their inner resources to adjust.

 

Stuart L. Klein

Executive Director

Survivor Spotlight - Leon Warshaw

 

UF Health Proton Therapy Prostate Cancer SurvivorOn June 19, 2015, Leon Warshaw was diagnosed with advanced prostate cancer with a Gleason Score of 8. Facing an aggressive, fast-spreading cancer, Leon was determined to find the best treatment option available to him. He began researching treatment options and consulted several doctors, who knew little about proton therapy and all recommended the same thing: hormone therapy and radiation. Nervous about the side effects associated with standard treatments, he focused his research on proton therapy.

“What I read eased my anxiety somewhat, in that it seemed to offer the least amount of side effects but was equal in results to more traditional treatment methods,” said Leon.

It wasn’t long before Leon and his wife arranged a tour of UF Health Proton Therapy Institute. They explored the facility, spoke with staff and had lunch with current patients, who were happy to share their experiences. The warm atmosphere and patient-centered care encouraged them to take the next step.

“There was an anxious waiting period to learn if I had been accepted for treatment,” said Leon. “When the call came, I felt as though I had just won the lottery.”

Six months later, Leon and his wife traveled from their home in Sarasota, Florida, to Jacksonville. With the help of the Patient Services team, they found a condo to rent in Jacksonville for the duration of his treatment. He has fond memories of attending events organized by the Institute for patients such as weekly luncheons and group outings, where he watched in awe as patients opened up, happy and smiling, seemingly forgetting for a moment that they were in a fight for their lives. These experiences helped Leon form a close bond with his fellow patients. They became, as he calls them, friends in the battle.

“I cannot stress enough how much these activities and weekly luncheon events meant to the mental and physical well-being of myself and all of the patients,” said Leon. “Other than the short treatments, it was like being on vacation.”

Leon, a retired retail executive and entrepreneur, is now a member of the Civilian Volunteer Police in Sarasota and recently received an award for lifesaving efforts.

Expansion Project Update

 

Construction is well underway for the new 10,000-sq.-ft., single-room proton therapy gantry and cyclotron. We are making excellent progress and anticipate the construction to be completed next year. The expansion will increase patient capacity by approximately 25 percent, allowing us to bring the benefits of proton therapy to more people.

 

 

Here are some fun facts about the construction:

  • The foundation will rest firmly on 67 concrete piles that are driven into the limestone bedrock several feet below ground.
  • The gantry will have room to rotate when installed, thanks to a 15-foot pit excavated on the construction site.
  • Materials used for construction include more than 172 tons (344,000 lbs.) of rebar and approximately 1,300 cubic yards of concrete – that’s over 130 truckloads of concrete.

We will continue to provide updates as the project moves forward. In the meantime, check out this time-lapse video, taken by the construction crew, of the development so far.

April – Head and Neck Cancer Awareness Month

Dr. Roi Dagan is director of the head and neck program at UF Health Proton Therapy Institute. Watch this video to learn about cancers that occur in the head and neck and how proton therapy can provide excellent treatment while reducing the impact on surrounding healthy organs.

 

Paying it Forward

 

Alumni patient Leon Warshaw, present donation to UF Health Proton Therapy

Alumni patient Leon Warshaw, a prostate cancer survivor, recently presented UF Health Proton Therapy Institute’s For the Children Fund with a $1,000 gift to benefit pediatric cancer patients.

“The pediatric program is nothing short of a miracle for the young children being treated,” said Leon. “The pleasant and comforting personalities of the nurses, technicians and doctors are heartwarming and supportive.”

Leon’s generous gift was made possible by his service with the Sarasota Civilian Volunteer Police. Leon and his Civilian Volunteer Police partner, Demetri Lignos, received the Noah Williams Humanitarian Award for their lifesaving efforts after they discovered a homeless man who was sick and unable to move, lying in the sun alone and unattended for a week following a heart attack. In addition to the award, the Williams family presented Leon with a $1,000 check to be donated to the cause of his choice. He knew immediately that he wanted to use the opportunity to give back to UF Health Proton Therapy Institute.

“The staff at the UF Health Proton Therapy Institute deserves the highest recognition for their professional and effective methods of protecting, treating and supporting young patients,” said Leon. “I hope that my small gift will help give the children joy and support their morale during their treatment period.”


The Institute’s For the Children Fund was created with the mission to provide children with the opportunity to enjoy life, despite their cancer diagnosis. Charitable gifts like Leon’s fund activities, like Family Fun Night, and support two artists-in-residence who guide patients as they create weekly art projects. They also help provide a Child Life Specialist, who uses medical play, preparation and education to promote understanding and help reduce anxiety in pediatric cancer patients.

For Leon, the impact these services had on pediatric patients and their families was undeniable.

“So much thought and care is given to the method of treatments to alleviate fear, pain and discomfort,” said Leon. “I was brought to tears as I observed these young people playing and enjoying their activities while undergoing major treatments. The children showed great strength and enjoyment in all of the attention and care they received.”

Executive Director Message

 

StuartKlein.pngWhat kind of impact can a donor make at our proton therapy center? We see it in the eyes of our pediatric patients who are delighted to return day after day to the newly renovated Jane and Mike McLain Pediatric Recovery Room. We see it in the faces of our patients and caregivers who gather around the art table and concentrate on an art project for a while, not cancer. We see it in the dedication of our clinical research team who document and analyze patient outcomes and publish results. These are a few examples of how the generous philanthropic support of many makes high-quality, compassionate and cutting-edge medicine possible. It is truly an honor to receive these gifts and to see the impact in patient care every day.

 

Stuart L. Klein

Executive Director

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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.