Tumor was the size of a small baby – Patient traveled 3,000 miles for care

When Aron Svavarsson traveled across continents he was surrounded by a team of caregivers from IU Health – showing compassion not only for Svavarsson but also for his family.

By IU Health Senior Journalist T.J. Banes, tfender1@iuhealth.org

The way his mom describes it, Aron Svavarsson’s care team swarmed around him like a circle of attentive relatives – anticipating and preparing for his arrival.

First there was the contact with Maria Siddons, a coordinator with destination services. Svavarsson was traveling to Indianapolis from Reykjavik, the capital of Iceland, seeking care for germ cell tumors. He had been diagnosed with testis cancer. Six tumors had been discovered ranging in size from a small baby to a tennis ball. He was scheduled to arrive in Indianapolis during a busy conference week so housing was scarce. Siddons helped him locate a place to stay. From the moment the family arrived, Siddons remained in touch – helping them navigate appointments, complete paperwork, direct them throughout the city, and then securing rehabilitation and additional housing. He was joined by his mother and girlfriend Vigdís Marteinsdóttir and Asthildur Greta Simonardittir.

The second oldest of five siblings, Svavarsson, 25, had other needs when he came to Indianapolis. He says at the age of 15 he started drinking and experimenting with drugs. Five years ago, he entered rehab and turned a corner.

“I got sick and tired of being sick and tired. I learned that if you want to make progress you need to go to a 12-step program and stick with it. I relapsed after two months and I experienced the desperation of a drowning man. When I went back, I began working the steps with my sponsor,” said Svavarsson.

It’s part of his story. He wanted it to be part of his care. So when he was a patient in Indianapolis, he attended AA meetings at Methodist Hospital.

“I can tell you my experience with destination services is way beyond what we can describe. We are so grateful. I get teary-eyed thinking about it. They have gone above and beyond,” said Svavarsson. His oncologist in Iceland referred him to IU Health, but even before his plane landed in Chicago, Svavarsson was well aware of the reputation of IU Health doctors for treating testicular cancer. Dr. Lawrence Einhorn is known throughout the world for his successful treatment of testicular cancer – germ cell tumors – using a mix of high dose chemotherapies and peripheral stem cell transplant.

It was December of 2018 when another resident of Reykjavik traveled to Indiana for treatment of testicular cancer. Cardiothoracic surgeon Dr. Kenneth Kesler removed a six-pound tumor from Gudbjorn Johann, 23.

“We spoke to my oncologist to get in touch with previous patients who had come to IU Health and the next thing we know my mom gets in touch with the mother of another patient, and then we are connected through a Facebook support group and we’re hanging out together,” said Svavarsson. That experience alone, made the world seem a little smaller. And then when he arrived in Indianapolis, Svavarsson said everything seemed familiar, not so scary. His mother even delivered cards to the staff of destination services from a former patient.

Primarily found in males ages 15 to 44, testicular cancer most commonly spreads to the lymph nodes and chest, pelvis and neck. Svavarsson’s first detection came from a lump near his left shoulder in July 2019. By August he was scheduled for an orchiectomy followed by chemotherapy at a hospital in Reykjavik. When scans showed additional tumors he began making plans to come to Indianapolis.

On December 13, a team of physicians including Dr. Kelser, Dr. Timothy Masterson, and Dr. Michael Moore performed more than 12 hours of surgery. Setbacks followed – including a seizure that landed him in ER. He was intubated and unconscious for five days. Svavarsson lost muscle tone and more than 40 pounds, but he is alive and looks forward to resuming his life back home.

In Reykjavik he works alongside his father as a sheet metal employee and also enjoys restoring old cars. He’s the proud owner of two projects – a Volkswagen and a Mercedes.

“Since I got here I’ve constantly been waiting for that emotional dive – when I hit rock bottom and feel hopeless, but it hasn’t come,” said Svavarsson. “Sure, I’ve been in severe physical pain, but there’s an undisputed feeling of gratitude that has carried me through the whole process. I have so many people at IU Health to be thankful for.”