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CVM student, cancer survivor speaks to peers on Feb. 15

By Sarah Carey

Casey Siljestrom.

Freshman UF veterinary student Casey Siljestrom is 23 but often feels much older. That’s because she’s been through things that many her own age could never grasp — experiences that have enhanced her appreciation of each day, but also made it difficult at times to connect with others for whom life has been relatively carefree.

So most of the time, Siljestrom doesn’t talk about the ordeal that took nearly a year out of her life. At 18, she was diagnosed with Ewing’s Sarcoma, a rare form of pediatric cancer. She has spoken publicly at American Cancer Society-sponsored events, such as Relay for Life. But Siljestrom soon plans to open up about her experience to other veterinary students and anyone else who would like to hear her story. She’ll be speaking Feb. 15 from 12:30 p.m. to 1 p.m. in Lecture Hall A of the Veterinary Academic Building, and everyone is invited.

Her talk will be titled, “Pediatric Cancer, The Late Effects: A Personal Story of Survival and Questions for the Future.”

“Pediatric cancer doesn’t have as big an advocacy base as other types of cancer,” said Siljestrom, a Sarasota native. “I think it’s because there are poor statistics as far as survival rates, and parents that go through this with their kids are so exhausted by the whole process that it’s harder to bring awareness. I happen to be one of the older people to get pediatric cancer; I was 18 when diagnosed. So it’s a little easier for me to recall events and discuss it from my point of view.”

Siljestrom remembers clearly when she first noticed the peanut-sized lump on her back. She was at her junior prom. Standing with her hands on her hips, she felt the small lump. She thought it odd, but didn’t dwell on it. Any time she’d visit a doctor, she’d ask him or her what they thought. “Probably just a fatty lipoma,” they’d say. “Nothing to worry about.”

Casey Siljestrom with her husband, Colby Siljestrom, and their standard poodle, Jonah.

A few months later, Siljestrom, an accomplished violinist who played with the Florida West Coast Symphony Philharmonic, was at a rehearsal wearing standard ensemble apparel, including a fitted top. The lump by then had grown quite noticeable, evolving to the size of a golf ball.

She made an appointment with a plastic surgeon to have it removed, but the procedure didn’t go as planned, taking longer and requiring more-than-usual anesthesia. Disturbed, the doctor ordered a biopsy and an MRI. During Siljestrom’s return visit for suture removal, the doctor called her mother aside. Siljestrom sensed something was wrong, but went as usual to her symphony rehearsal. Later that night, her parents gave her news: Her tumor was malignant.

“A few weeks later, when we actually discovered what it was, I learned it was actually an incredibly rare cancer,” Siljestrom said. “Ewing’s Sarcoma is typically a bone cancer, but mine was in my soft tissues, so it’s called extraosseous.”

After extensive testing at Shands at UF to determine the best treatment protocol, Siljestrom began chemotherapy treatment at Children’s Hospital in St. Petersburg. Fourteen rounds of chemo. Five different drugs. Additional surgery. Setbacks. She endured it all over the course of a year.

“A standard hospital stay was five or six days every two weeks,” Siljestrom said. “In between, I would have to go in for CBC’s. Your white cells are basically gone, so if you get a fever above 102 degrees, you have to go to the hospital. That happened a few times.”

Academically gifted, Siljestrom, had already knocked out most of her required high school classes and was at the time taking college-level courses. She was able to complete the single traditional course she needed online in order to graduate with her senior class. Amazingly, she’d held her place in the symphony, and after treatment was able to participate in a June concert at Carnegie Hall in New York.

At the end of her treatment, Casey Siljestrom was able to perform with her symphony group at Carnegie Hall.

“I was still in a wheelchair and my parents had to push me,” she said. “It was over an hour, so I loaded up on pain meds. But I did it.”

The oldest of three kids, Siljestrom’s siblings were 8 and 15 at the time she was diagnosed, and her family members and a few friends from her church became the only people she regularly interacted with.

“During the year of my treatment, most of my friends, especially my church friends, were really close, but a lot of people fell off the radar,” Siljestrom said. “I think they just couldn’t handle it. Cancer is very shocking for a lot of people and a lot of them were getting ready to go to college. It was a big buzz kill to hang out with me.”

When she left home for college at Florida State University, she no longer had hair, missed her family and was sick constantly. In addition to losing her long brown hair, she had lost facial hair and had no eyebrows or eyelashes.

“It was really weird,” she said. “I looked like an alien.”

Judy Altier, Casey’s mother, comforts her daughter during her treatment at All Children’s Hospital in 2007. (Photo courtesy of Casey Siljestrom)

She’d always wanted a dual major in biology and violin performance, but soon found she could no longer play her instrument for more than an hour at a time. She had severe nerve damage after chemo and even now suffers from peripheral neuropathy.

Dropping her violin playing was as painful emotionally as some of her physical side effects.

“That was probably the biggest disappointment,” she said. She couldn’t stay up late and go out like other college students because she tired easily due to the medications she had to take and couldn’t stay awake.

At the same time, Siljestrom’s situation just intensified her focus on her academic goal of getting accepted to veterinary school. She worked in a laboratory instead of at a clinic to minimize the possibility of infection and continued to visualize one day being able to work with large exotic animals – a goal she still has.

It took about two years for Siljestrom to get her normal level of energy back after starting college, she said. But about the same time, she noticed some of the late effects of her treatment. Heart problems, decreased kidney function and nerve damage were some of the symptoms Siljestrom experienced.

“That’s actually why I’m doing this speech,” she said. “There is almost no awareness of the late effects of modern protocols of pediatric cancer. They give very aggressive treatment to patients of pediatric cancer for two reasons, one being the high mortality rates and one being that it’s easier for a younger body to take all of the chemo, since it’s more resilient.

“As a result of that, you see these effects years after treatment, but you don’t have big group of survivors who are dealing with these problems later in life,” she added. “As the years have gone on, I’m seeing these problems. I do keep in touch with fellow survivors I met through this program and they are dealing with some of the same issues.”

Casey Siljestrom and her dad, Stephen Altier, in Cinque Terre, Italy, where they went to visit family members. The trip was a gift from Dreamfund, an organization based in St. Petersburg, Fla.

Siljestrom wants people to know that her talk is focusing on human, not veterinary medicine. At the same time, she says there are overlapping goals in research and drug development in both disciplines.

“The knowledge base with veterinary medicine is enormous and really does affect human medicine and how we develop our drugs,” she said.

She also said she’s figured out to cope with many of her problems, which include dealing with pain every day and knowing her limitations.

“At first it was so difficult, but I really am happy with where I am now,” she said, adding that when she had to let go of her violinist ambitions, she began spending more time on other creative outlets. Her mother taught her to sew at an early  age, and that interest grew and even thrived in the aftermath of her illness.

“My favorite is buying fabric at thrift stores, or using fabric from old clothes,” Siljestrom said, adding that pillows she created from a Chinese robe were sold in the recent SCAVMA art auction.

Siljestrom said that when she’s spoken of her illness previously, it has generally been for adults with money to donate.

“This specific talk will be out of my comfort zone, because it will be in front of people I know and will work with for a long time,” Siljestrom said. “Ultimately, I’m doing this as an ambassador for the National Children’s Cancer Society to make people, specifically other health care professionals, more aware and sensitive to the issues.”