Executive Director Message

StuartKlein.pngMay is brain tumor awareness month, and the UF Health Proton Therapy Institute is a regional resource with radiation oncologists who specialize in treating brain tumors and other central nervous system tumors. Our pediatric program is well-known worldwide for excellence in treating rare tumors such as craniopharyngioma and ependymoma. Of the pediatric patients we have treated, 65% have had a brain tumor. What makes proton therapy optimal for treating brain tumors? In children, we can reduce the amount of collateral radiation to healthy, growing brain tissue and other critical structures such as the eyes, ears and pituitary gland. This means less risk of cognitive, visual or hearing impairment, and hormone deficiency. These same benefits are seen in adult brain tumor patients as well. And because more targeted radiation doses are given, better tumor control may be achieved. This is the two-fold benefit of proton therapy, excellent tumor control and excellent quality of life outcomes for patients.

 

Stuart L. Klein

Executive Director

Jacksonville Feels Like Home to Family from Australia

australia

By Theresa Edwards Makrush

When Kalpana Nagraj and Prasanna Venkatesh learned that tumor remnants in their 10-year-old son Arjun’s brain showed signs of growing after 16 months of remission following surgery they were surprised. Arjun was not experiencing any symptoms said his father Prasanna. The change, however, was visible on the imaging scan done as part of regular monitoring of his condition. His doctors in Sydney, Australia, recommended radiation therapy.

Kalpana, Arjun’s mother, said at the time of his initial diagnosis in August 2017, he had recently passed a rigorous academic exam and was placed in one of the top schools for gifted and talented students. Through their discussions with the radiation oncologist in Sydney and their independent research, they were aware of the potential treatment-related risks to cognitive function. “We didn’t want the effects of radiation to affect his future prospects given he is a very bright child,” she said 

Arjun’s parents with strong support from their local radiation oncologist, endocrinologist and general practitioner began researching options, including a Facebook page for parents whose children have been diagnosed and treated for craniopharyngioma – a tumor so rare it is estimated to affect two people in a million. There they got in touch with a family from Australia who had a child treated with proton therapy at the UF Health Proton Therapy Institute. Encouraged by what they learned, they reached out to the experts at the Institute as they wanted Arjun to reach his maximum future potential.

They also looked into other proton therapy centers around the world, there are none in Australia, and were therefore confident in choosing the UF Health Proton Therapy Institute for Arjun’s treatment. “When you look at the medical research about craniopharyngioma, Dr. Danny is one of the world’s best. They are the leader in the field, and UF Proton has had the most success in treating children with craniopharyngioma,” said Prasanna.

They were connected with Amy Sapp, RN, BSN, director of pediatric nursing, and Daniel J. Indelicato, MD, director of the University of Florida pediatric radiotherapy program and associate professor of radiation oncology. “We had interaction with Amy and Dr. Danny before we got here. They sent the information to our doctor to quickly make a decision, and enabled us to process the Medical Treatment Overseas Program, or MTOP, paperwork. Their responsiveness was fantastic,” said Kalpana and Prasanna.

Within two weeks of approval by the MTOP, the family, including six-year-old daughter Avika, made the journey to Jacksonville arriving on March 11. Heather Oakley, LCSW, OSW-C, director of social services and pediatric oncology social worker, helped arrange housing and transportation making the experience easy. “They organized for us to get picked up at the airport. They took us directly to Walmart to shop. We had everything in hand,” Kalpana said. She was delighted to learn about the loan closet at the Institute where she found everything from a tea kettle to an X-box complete with games to entertain the children. “You don’t have to feel like you need to bring everything from home,” said Kalpana.

Prasanna said that because of the support network at the Institute, families should not be afraid of being out of their comfort zone if they need to travel for treatment, especially when you want to give your child the best treatment possible. “If the fear is you have to go to the other side of the world, it’s not daunting because the support network is here.” Kalpana added, “We actually felt like we were at home.”

Arjun has not had any acute side effects while having proton therapy. His neurological evaluation indicates that he is in the top percentile for his age with no loss of cognitive function, his parents said. He has Skyped with his teacher in Australia to keep up with his studies, and is preparing for a national level exam in May. Kalpana said he’s taking good care of himself, making sure to eat healthy foods and to exercise – his favorite is swimming the freestyle stroke and the backstroke – doing everything he can to get well. She said, “He’s an old soul in a young body. He’s a very motivated child with a fighting spirit, and UF Proton and their wonderful, amazing team have ensured Arjun receives the best.”

The family enjoyed participating in the many activities hosted by the social services team at the Institute, including Family Fun Night, support groups and outings to shows and theme parks. Jennifer Duncanson, MS, CCLS, child life specialist, was excellent and supportive and helped organize all tickets. Staying active and connected helped the family keep a sense of normalcy said Prasanna.

Kalpana said the art table in the lobby staffed daily by artist-in-residence Pamela Gardener was especially beneficial. Arjun said, “Everyone is very friendly. Pam entertains me and makes me happy every time I come here.” Kalpana and Avika also enjoyed the art table, and Kalpana said talking with Pam and doing the projects helped her to not be anxious or stressed.

“If you want to feel like you’re at home and get the best holistic treatment for the whole family, come to UF Proton,” said Kalpana.

australia

australia

 

Nurses Who Specialize in Proton Therapy and So Much More

nurses

By Theresa Edwards Makrush

The depth of experience and specialization at the UF Health Proton Therapy Institute in every department is a distinction that sets us apart from other proton therapy centers and radiation oncology practices in the region. In recognition of National Nurses Week (May 6-12), we highlight the expertise of our adult nursing team, which is led by Gail Sarto, RN, BSN, director of adult nursing.

According to Gail, all of our nurses are both clinical – meaning they provide the day-to-day care of patients receiving treatment – and do research – meaning they conduct follow-up with patients on clinical trials. Each nurse works as a team member with the physician and has a specialty in the anatomical site that is being treated. There are multiple bilingual nurses, and we have five languages represented on the team besides English.

With over 400 years of combined experience, the adult nursing team is comprised of 20 full-time nurses and medical assistants, five part-time nurses and medical assistants and one administrative assistant. Their ranks include five oncology certified nurses, two nurses who have master’s degrees in nursing and one nurse who is working toward a doctoral degree in nursing research.

Our nurses apply their specialized knowledge and skill with compassion. Patient care is tailored to the individual, and the nurse case manager helps patients manage symptoms or treatment-related concerns during and after treatment.

Excellent nurses have a unique capacity to care and to take action to help others. Both on the job and on their own time, our nurses exemplify compassion, professionalism and leadership.

Adult Nursing Team Interesting Facts

Our nurses have a wide range of experiences and interests. The following list illustrates some of their exceptional accomplishments.

A member of the team:

  • Has been a combat airborne medic and received the Meritorious Service Medal
  • Is a board member on the local American Cancer Society
  • Was a supervisor of a phlebotomy lab
  • Worked in Africa in the Peace Corp
  • Was the assistant nurse manager of the Shands ER
  • Was a manager of a turtle farm
  • Is a member of the National Disaster Response Team
  • Was a Wildland Firefighter
  • Was an owner of a long-term assisted living center
  • Was a member of the United Nations refugee Relief program
  • Was a labor and delivery nurse for over 10 years
  • Has yoga certification working with patients with a cancer diagnosis

Many team members:

  • Were medical assistants or certified nursing assistants before they became nurses
  • Have Intensive Care experience and one had a specialty in Neurology

Clinical Research Documents the Benefits of Proton Therapy

UF Health Proton Therapy Institute clinical research program

By Theresa Edwards Makrush

Over the past 12 years, the volume of published research about proton therapy has grown significantly, thanks in part to the clinical research program at the UF Health Proton Therapy Institute. Our UF Physicians lead research on proton therapy for cancers of the breast, central nervous system, head and neck, lung, pancreas, and prostate as well as lymphoma, chordoma and sarcoma. Since August 2006, we have opened 65 clinical trials. Of those, 36 have been completed and more than 174 articles have been published in peer-reviewed medical journals.

“The main purpose of the research is to document in a scientifically credible way the benefits of proton therapy,” said Nancy P. Mendenhall, MD, medical director and University of Florida professor of radiation oncology. “We think these benefits are going to be present in every single application: pediatrics, brain tumors, head and neck cancer, breast cancer, prostate cancer, lung cancer, pancreatic cancer.”  

One clinical trial that opened in 2006 and is ongoing is the Outcome Tracking Project, or OTP. Nearly all adult patients – 97% – have elected to participate and a majority of pediatric patients – 76%. This registry is an important source of data since it collects information from patients and from their medical records regarding their disease, treatment and side effects to see what effect the radiation has on them and their disease.

Much of the work in analyzing the data collected by nurse case managers and reported by patients is supported by the 11 staff members in the Research Services department. Led by Robin Cacchio, RN, CCRP, the team has a combined 40 years of proton therapy experience. They include four who are registered nurses, or RNs, and five who are certified clinical research professionals, or CCRPs.

>> Click here to learn more about clinical research at the UF Health Proton Therapy Institute.

Students Make Donation in Support of Classmate

donations

By Theresa Edwards Makrush

Last October, nine-year-old Hartley Georges had proton therapy for a rare brain tumor, medulloblastoma. The third grader at Orange Park Elementary School in Orange Park, Florida, kept up her studies with the help of her teacher Jennifer Allen, and kept up her spirits with the help of her schoolmates and the social services team at the UF Health Proton Therapy Institute. Hartley’s mother Michelle Georges said her teacher knew how much joy the art table brought to the entire family and organized the school’s student council holiday donation drive to collect art supplies for the Institute.

With a list from Pamela Gardener, artist-in-residence at the Institute, the entire school from Kindergarten through 6th grade chipped in to gather up enough art supplies to fill many large boxes to the brim with everything from acrylic paint to yarn. They also collected toys for the child life program and dropped them off to child life specialist Jennifer Duncanson, MS, CCLS. Michelle said the art program and the child life program helped the patients and their families connect with each other, relax, and feel more comfortable. “Pam was wonderful. We loved seeing her on Monday, Tuesday and Wednesday,” she said. “A smiling, familiar face and someone popping in and checking in each day was the joy that Jennifer Duncanson brought.”

The gift of art supplies and toys will help reduce anxiety and inspire creativity for patients and family members. “We are overwhelmed by the generosity of the Orange Park Elementary School and the people who made it happen,” said Pamela.

donations

donations

 

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.