By BeckyLynn Schroeder

Traveling to a different town, state or even country to receive treatment for their child’s cancer is a difficult experience for any parent. Extra pressure is on parents who must navigate unknown waters in an unfamiliar place often without their support system at home. Recently, published research shows that while traveling to receive proton beam therapy is not without difficulties, the programs and resources available in the United States are clearly helpful in facilitating the adjustment and turn what could be a negative experience into a positive one.

The article “The ‘radiation vacation’: Parents’ experiences of traveling to have their children’s brain tumors treated with proton beam therapy” discusses insights from research on the experiences of parents from the United Kingdom whose children have had brain tumors treated with proton therapy in the United States. Data analyzed from participating parents, many of whom brought their children to the UF Health Proton Therapy Institute, suggests that the time during proton therapy appears more positive than the periods before or after it. These findings are remarkable and contrary to previous research that suggests the time during cancer treatment is psychologically hardest for parents.

The findings expressed in this article reflect testimonies from parents with children being treated at UF Health Proton Therapy Institute and validate the investment we make in our pediatric social services program. We know that pediatric tumors and cancer impact the whole family, which is why we are focused on providing holistic family-centered care. The UF Health Proton Therapy Institute employs a full-time Child Life Specialist who focuses on the well-being of each child throughout treatment. Behind-the-scenes pretreatment tours, age-appropriate videos, activities and interactive iPad applications help children feel more comfortable before their treatment and eliminate surprises and anxiety from both the patient and the parents. Ongoing psychological assessment and supportive counseling is provided by our dedicated pediatric social worker in addition to school advocacy, and a vibrant adolescent and young adult program.

Aside from professional support, the article also found that social interaction and distractions with other families are an important part of finding benefits during treatment. With 90 percent of the children treated at UF Health Proton Therapy Institute coming from outside of Jacksonville, including a large number from other countries, providing resources, organizing outings, family dinners and programming for pediatric patients and their families is a large part of the focus our team provides alongside cutting-edge cancer treatment. 

Over the past 10 years, the UF Health Proton Therapy Institute has treated more pediatric patients than any other proton center in the world. Our goal for the next 10 years and beyond is to continue to provide the highest standard of care across every spectrum and to help all that come through our doors have the best possible experience throughout treatment and beyond.

We are very fortunate that 12 years ago, before we were even open, a benefactor stepped forward to establish the Play Golf. Fight Cancer.^® Classic, a golf tournament to raise money for our clinical research program. We rely on the proceeds from this charitable event to supplement our research budget. Here is an example of why funding research is so important.

Recently we published a study on breast cancer that initially only had funding for 12 patients, but needed to expand to 18 to allow an even number of left-sided and right-sided breast cancer patients to enroll in the study. We reallocated funds from our operating budget to make it possible to expand the study. This research led to the discovery of critical evidence that proton therapy spares all patients’ hearts and lungs from large doses of radiation. If it were not for the additional funds, this important discovery may have been delayed, or worse, may have never happened.

I hope you will consider supporting our research program this year through sponsoring or participating in the 12th annual Play Golf. Fight Cancer.^® Classic.

Sincerely,

Stuart L. Klein

A recreational tennis player since his thirties, proton alum (2009) Howard Rugaber didn’t expect that at age 66 he would be a national champion. But, to his surprise, he and his doubles teammates rose through the ranks to win the National USTA 8.0 championships held in Surprise, Ariz., in April.

“I was asked to be on the team in June of last year,” said Howard who lives in St. Simons Island, Ga., where he owns and operates a landscaping company. “A friend of mine who I play tennis with from Columbus, Ga., was putting together a team to beat the other GA teams in the state tournament. When he asked me, I said, ‘I don’t play much doubles, but I’ll be happy to be on the team.’ I learned a lot on the way.”

The way ended up being a state tournament win in Savannah, Ga., that led to a regional tournament win in Dothan, Ala., ending in the national title win in Arizona.

Howard said the team practiced hard between tournaments to be ready for the competitions. Judging by their athletic achievement, you would never know that some of the players had previously had knee replacements, hip replacements, and proton therapy for prostate cancer.

When Howard was diagnosed with prostate cancer, he talked to friends and a fellow tennis player about it and they told him about their success in beating the disease with proton therapy at UF Health Proton Therapy Institute. As a University of Florida alum, it was an easy decision for him to have proton therapy in Jacksonville. 

“I was very fortunate. I was kind of a poster child for all the treatments. I had no negatives associated with it,” Howard said. Even with a three-hour round-trip commute to receive daily treatment he maintained his regular schedule. “I worked every day, and I played tennis almost every day. I didn’t really get tired like some people do who get radiation.”

More than six years post-treatment, Howard and his wife Trish, whom he met while in college at UF, enjoy spending long weekends in the Jacksonville area at the beaches in Ponte Vedra and playing tennis with friends.

For an overview of the research program, how it works and why it matters, we invite you to watch this online video.