Dr. Danny and Sue Anderson Reunite and Share Impact of Daughter’s Proton Therapy Treatment at Conference in Australia
In June, Daniel J. Indelicato, MD was invited to speak on a panel at the biennial Pediatric Radiation Oncology Society meeting in Sydney, Australia. The title of the session was Starting a Pediatric Proton Therapy Service: What Advice Can You Give Us in Australia? He was joined by a very special guest: Sue Anderson, mother of Audrey—a former UF Health Proton Therapy Institute patient and namesake for the lobby’s iconic chimes.
In 2011, the Andersons travelled nearly 10,000 miles from Melbourne to Jacksonville, Fla. so Audrey could receive proton therapy for the treatment of a craniopharyngioma. Craniopharyngiomas are benign brain tumors that occur in a critical brain region adjacent to the optic nerves, carotid arteries, and pituitary gland, often making surgical resection too dangerous. Audrey underwent six weeks of treatment at the UF Health Proton Therapy Institute far from home.
On the panel, Sue Anderson discussed how traveling to another country for treatment affected her daughter and their family.
“Audrey was 5 when diagnosed with an inoperable brain tumour and we quickly learned of the challenges with local treatment options in Australia, prompting our travels to the Institute for an alternative treatment. Our children were all young and being together was important as it was Christmas. Since her diagnosis in March, the year had been filled with uncertainty, big decisions and anxiety. Having connected with Dr. Danny and the team in Jacksonville turned this to clarity, calm and a higher degree of certainty. It was clear from the outset that we were in very safe hands.
Finding our way in Jacksonville was easier than expected. Moving into a home near the coast and switching gears to treat the time as a special break from the previous stresses was very effective. We appreciated the distance from Australia and in some ways, it gave us the space we needed to rest, connect and laugh.”
Sue told the audience of doctors, nurses and physicists from around the world about the pediatric personnel and special environment of care developed by the team in Jacksonville. She encouraged them to think comprehensively—beyond the radiation technology—when designing a facility intended to serve both adults and children.
“The rituals of daily treatment were so well supported and injected with creativity and care for the whole family. This investment by the UF Health Proton Therapy Institute allowed the children to all be part of the process in fun ways, and we as parents were scaffolded to look after ourselves in this time. We are forever grateful for the environment and culture of the Institute, as it immediately changed the emphasis from concern and working hard for solutions to one of trust, calm and care. The team were, and still remain, world leaders in their space. This includes the child life therapy team who connected with Audrey in clever ways to lift her confidence as a 5-year-old so that she no longer would require daily sedation. The impact of this was massive, as it reduced the unwanted impacts and the time taken for each daily treatment allowing her to focus on the fun and special activities that normalized life for a little person.
The team were always by our side and still are. The UF Health Proton Therapy Institute is built with endless capacity to care as it is part of the DNA of the organization. The right things are prioritized to ensure the most informed decisions are made quickly and the family is always in the loop so that concerns are supported. The energy then turns to the wrap-around services that lift families out of the stress they have managed to enjoy connecting in healthy ways. This created opportunities to build friendships through activities and immediately bridged the gaps of loneliness when we were so far from our normal support network.”
Today, patients ring Aud’s Chime in the lobby on the day their treatment is complete. This tradition started with the Andersons. Audrey’s family first envisioned the chime as a way for patients to commemorate their final day of treatment. The family helped design the eight-foot chime and the UF Health Proton Therapy Institute worked with a local artist to create the impressive piece and install it in the center of the bright lobby. Audrey became the first official ringer in 2013, after traveling back from Australia with her mother for its official unveiling. Today, you can hear the deep, peaceful sound of the chimes many times each week as patients celebrate the ending of their radiation treatment.
Australia expects to open their national proton center in 2028. Until the facility is commissioned, Australian children requiring proton therapy will travel overseas. Many will travel to Jacksonville, like Audrey, drawn by the experienced staff and unique culture at the UF Health Proton Therapy Institute. “In the past five years, we’ve treated 30 children from Australia with a variety of diagnoses,” said Dr. Danny. “At the conclusion of their treatment, each has celebrated the milestone by ringing Aud’s Chime, surrounded by their family and proton therapy team.” As the session in Sydney wrapped up, Dr. Danny had an opportunity to reconnect with Audrey herself. They shared memories of her time in Florida and caught up on Audrey’s many accomplishments since 2011.
“We are forever grateful for the quality of treatment and care that was offered to Audrey and our whole family. We left Florida knowing there is always family at the UF Health Proton Therapy Institute,” said Sue.