By Barb Hart

On November 15, 2018, my husband was diagnosed with esophageal cancer. I, of course, went online and this is one of the first sentences I saw: “Esophageal cancer is the sixth most common cause of cancer deaths worldwide.” It was not a good day.

Stew is fortunate. His cancer was caught early before he had any symptoms. Also, while we live on a boat and have sailed all over the Caribbean and across the Atlantic, we are currently living in St. Augustine and have very dear (and very smart) friends who work in medicine in Jacksonville. Consequently, we knew about the UF Health Proton Therapy Institute and were quickly referred to Dr. Michael Rutenberg, who has experience treating esophageal cancer and who is simply a wonderful person. (One of many wonderful people who work at Florida Proton.) With referrals to an oncologist and to a surgeon, we were off on this adventure.

On December 26, Stew had the first of 28 proton therapy treatments. In addition, every Friday we visited another facility where Stew had chemo. As I write this, we are waiting for tests prior to (we hope) surgery. It won’t be fun, but all of his physicians have been encouraging and we have reason to be hopeful.

What makes Florida Proton different? There’s a level of caring that goes beyond what happens in the treatment or exam rooms. There is an expectation that every single person at Florida Proton is pulling for both the patient and the caregiver and it slowly dawned on me that every single patient and caregiver we met felt they were all receiving special treatment, and we were. We were noticed. We may be part of a club that no one wants to join, but at Florida Proton that club is a team with a common goal.

The main lobby, the chimes, the art table, the puzzles, the Wednesday lunches, plus the attitude of the entire team at Florida Proton combine to provide a safe space for the patients and their caregivers to gather and chat and get to know each other. That interaction with other patients and caregivers is comforting and healing. It gives some of us a chance to help and others a chance to let go. Frankly, I had expected to take my laptop and get work done, but that’s not what happened. First, they don’t give out the Wi-Fi password at all and that’s a good thing. I didn’t need to write, or email, or text, or do research. I needed to be present for Stew, our fellow travelers, and myself.

I believe he was the only person undergoing treatment for esophageal cancer at that time and I know I caught a few pitying looks from other caregivers when they learned why we were there. That was difficult for me until I looked around and saw others who were more seriously ill than Stew, and still others who had traveled from other countries with a sick child. We are fortunate. In some way, we were all fortunate. Our team of two was supported by everyone who works at Florida Proton and by many of the other patients and caregivers. I hope we gave something back to them, as well.

By Theresa Edwards Makrush

“The Force” was with five-year-old Lila Everest as she rang Aud’s Chime March 21 signifying her successful mission to complete 30 proton therapy sessions for a brain tumor. Lila’s mom Karen Steel arranged for Star Wars reenactors to be there on Lila’s chime-ringing day. Karen met the Squad 7 members of the 501^st Legion at a February screening of the classic film Star Wars: A New Hope with the music score performed live by the Jacksonville Symphony Orchestra. Karen thought it would be the perfect way to help her daughter celebrate because Lila is a Star Wars fan.

According to Lila’s dad Tim Everest, her love for the Star Wars franchise began when she first watched The Empire Strikes Back. Since then, she has adored each of the movies and has become a huge fan. While in Florida, the family visited Disney World three times, the highlight each time being the Star Wars area of Disney’s Hollywood Studios. Tim recounted how Lila was delighted to interact with the characters, including a light saber battle with the villain Kylo Ren, whom she defeated, as well as one-on-one time with robot BB-8 and her favorite Chewbacca. 

With the help of child life specialist Jennifer Duncanson and the radiation therapists, Lila was able to do her treatment without daily general anesthesia. To help her cope, Lila’s parents would tell her Star Wars jokes and trivia to share with the radiation therapists who in turn would share other Star Wars facts. Even the mask used to help her head stay in position during treatment was painted with the face of the famed robot character R2-D2. “Everyone’s been so kind, the therapists especially,” said Karen. “Even though some days are quite dark.”

The family made a donation to the artists-in-medicine program in the name of the reenactors group as a thank you. Tim said the arts table was a welcome diversion for Lila, especially on days she didn’t want to go to treatment.

Lila will celebrate her sixth birthday at the end of March at her home in Brighton in the United Kingdom.