She defied the odds, beating a cancer that defied the norm


Casey Siljestrom holds Bam Bam, a gopher tortoise, as she gets a shot from Mary Giron at the University of Florida small animal hospital on Wednesday, March 13, 2013 in Gainesville, Fla.

Matt Stamey/Staff photographer
Published: Monday, March 25, 2013 at 6:00 p.m.
Last Modified: Tuesday, March 26, 2013 at 9:55 a.m.

Casey Siljestrom's senior prom was a turning point in her life.

After an afternoon of prepping her hair and makeup, and posing for pictures, she let loose on the dance floor with the rest of her graduating class. High school was ending, and so was a chapter of her adolescent life. She was sweating, she was happy, and she was alive.

Later that night, Casey stepped aside to cool off and catch her breath. Parched, she sipped on a glass of ice water, swishing away her thirst. In that comfortable corner of the room, she rested her hand on the back of her hip and took in the moment.

But as her right hand grazed her right side, she felt a small bump.

Was there something in her dress? Wait, no. Was there something under her skin?

It was hard — the size of a nickel — and it was new. She pondered the possibilities but saved her worries for the next day.

Prom was a night she wanted to never forget.

* * *

Casey had always been healthy. A skilled violinist since third grade, she was looking forward to attending Florida State University, where she would double major in music and biology. She hoped one day to get into veterinary school.

Now 23, she is attending vet school at the University of Florida and following her dream of working with exotic animals. But a rare form of cancer nearly derailed her life.

Though multiple doctors said the bothersome bump was benign, when she opted to get it removed, it became clear it was more serious. The nub had a scientific name: extraosseous Ewing sarcoma.

It's a bone cancer; it's rare — with an incidence of about one case per 1 million in the U.S. population; and it's typically fatal.

Casey's cancer defied the norm. Most known cases occur in males, but she is female. The malignant mass was growing in her soft tissue, not her bone.

"Until someone looked me in the eye and told me I had cancer, I would've never guessed that's what it was," she said.

Doctors told Casey she had one option: chemotherapy.

At 18, she had to drop her last high school courses. She had dual-enrolled, however, and was able to use those credits to meet her high school requirements.

She graduated with the rest of her class as she began treatment.

* * *

When Casey was first told she needed chemo, she didn't know what it was. "Do you sit under a light?" she recalled asking, half-joking.

She would undergo 14 rounds of chemo at All Children's Hospital in St. Petersburg, about an hour north of her home in Sarasota.

When her room was ready, Casey would lie down on the bed, letting the nurse draw her blood and check her levels. Her mom stayed by her side.

"You have to have a certain white blood cell count before you can get chemo," Casey said. "If your immune system isn't at a certain level, they don't want to push it any further."

If her immune system checked out, the nurse "plugged in" her IV fluids into a port under her skin — a catheter in her superior vena cava, which allowed the fluids to flow directly into her heart and quickly pulse throughout her body.

"With the port, you can have four or five IVs in at once," Casey said. "It's kind of convenient if you need fluids, chemo, pain meds and stuff like that all at the same time."

After about 24 hours of fluids, the nurses would begin administering her chemo. Dressed in HAZMAT suits, they hung the bags of medication above her and plugged them into her port.

The drugs were so toxic that if one drop fell on a nurse, it would burn right through his or her skin, which made the protective suits necessary.

Those corrosive chemicals coursed through Casey's veins.

While nurses rushed in and out of Casey's room, her mom, Judy Altier, never left her side.

She watched as her daughter deteriorated. She was there for her the night Casey shampooed her hair and, clump by clump, it started falling out. She held her hand when the liquid agony flooded Casey's veins. And at night, when darkness drowned the hospital room, she slept on a small mattress at the foot of Casey's hospital bed, praying.

"There's no orientation day," Altier said. "You really have no idea what to expect."

But as machines beeped all day and all night, pumping pain into her child, Altier said she became numb to the noise.

"It was a scary, horrendous year," Altier said. "She's really come a long way."

* * *

When the cancer died, Casey was set free.

In the hospital, she envisioned throwing a party after treatment. She imagined celebrating with her family and friends. Her suffering would be in the past. Her health would snap back. She would be herself again.

But the celebration was muted.

"It was weird," Casey said. "You'd think it'd be really exciting, and it was, but I was still sick from the chemo."

She downed a cup full of medications every day. She was constantly exhausted, sleeping for about 16 hours at a time. On the FSU campus, when she started school, a shuttle drove her to class. Walking for that long was too tiring and painful.

In the midst of the madness, she met a boy.

Colby Siljestrom was in his last year at FSU and studying economics. Casey was in her first. He noticed the sweet girl with short hair and scarves. Eventually he learned why her hair wasn't longer and why she was always tired, but he didn't care.

"I had to bring her dinner a lot," Colby said, laughing.

Casey came to Colby's soccer and softball games, cheering him along on the sidelines. On nights when his buddies went out, Colby stayed in with his girlfriend.

"I had no problem just hanging out," Colby said.

As Colby's interest in Casey grew, the medical community's concern seemed to be waning.

Casey said it got to a point where some medical professionals were rude.

Specialists would see her for one problem, and when they realized the cause was rooted in cancer, they would tell her to see an oncologist. When she did, she was told, "You don't have cancer. Go see a specialist."

"You kind of fall through the cracks when you're done with treatment," Casey said. "Luckily, I'm older and was able to do all the research on my own. But younger patients might not be able to describe what's happening to their parents."

Sometimes her heart would race because of tachycardia. She once had nine urinary tract infections in one year. No one warned her the chemo would cause her to go into menopause years early, and her reproductive capabilities aren't a guarantee.

"The more doctors have turned me away, the easier it's been to deal with it," Casey said.

In Gainesville, Casey said she's lucky her current primary care physician, Dr. Jeffrey Budd, takes the time to see her and treat her, but for some survivors, that's not always the case.

"Unless you have a specific clinic for late effects," Casey said, "there's nothing for you, really."

Casey is now married to Colby. They live in Gainesville with a large standard poodle named Jonah, whose coat of tight, black curls shakes with excitement when greeting guests.

Casey works as an ambassador for the National Children's Cancer Society, bringing a voice to young patients still undergoing treatment.

Her faith is strong, and despite being reminded through pain and prescriptions that her health will never be what it was, she remains resilient.

The only visible remnant of her sickness is a scar on her back.

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