‘If you’re going through hell, keep going': Battling Lemierre’s Syndrome

The night of her brain surgery, Alexa Casciano leaned over to one of the residents in her hospital room and asked, “Am I gonna die? Like really, what’s the probability of me living through this?”

“Oh,” the resident said, “there’s about an 85 percent chance you’ll live.”

 “I checked out mentally after that,” Casciano said. 

That was three years ago. Casciano was 16. She played volleyball at Somers High School in New York and had a stellar academic record. She’d just gotten her driver’s license. She was planning her junior prom. 

And she almost died.

One Wednesday morning she woke up with a 105-degree fever.

“You’re not going to school today,” her mother, Joy Bassett, said. 

“Yes, I am,” Alexa said. “I have an AP exam. I have to go take it.”

Bassett relented, but took her to the doctor directly after the test. 

She had a sore throat, fever and high white blood cell count. The doctors diagnosed mono and sent her home.  

By Friday, Alexa wasn’t feeling better and returned to the doctor. She was given IV fluids, and sent home. Tylenol, Advil, prescribed medication, nothing helped. Alexa couldn’t move; she couldn’t swallow water. 

At 6:30 a.m. Monday, Alexa woke up feeling worse than ever. She felt like she couldn’t breathe. She thought eating something would help, and she got an ice pop.

“I instantly felt like something had come over me to the point where like, I cannot eat this anymore, otherwise I feel like I'm going to die,” she said.

At the walk-in clinic, Alexa reported having chest pains and trouble breathing. Alexa and her mother sat for an hour, waiting to be seen. Alexa started to tear up, the pain was so intense.  

A nurse who was on-call looked at Alexa and ran to get a doctor. She was gray, and her blood was septic. 

“They took the oximeter and put my finger and everyone just kind of looked at each other and they were like, ‘we don't know what to do,’” Alexa said. 

Her blood oxygen level was at 68. The normal range is 95-100.

An ambulance was there in two minutes.

That was the start of her 28 days at Westchester Medical Center. 

The doctors took an X-ray of her chest, and it revealed 40 lesions, or growths, on her lungs. 

“That was the first time I thought she was going to die,” Alexa’s father, Julian Casciano, said. 

Doctors operated, clearing her lungs, and they put her on antibiotics. She began to heal.

Her symptoms pointed to three possibilities, the doctors said. HIV, cancer or Lemierre’s Syndrome, which only occurs in about one in a million people. 

The day before she was supposed to be released from the hospital, her math teacher, Andrew Zenker, visited. 

About two hours into his visit, the right side of her face stopped working. She began slurring her speech, and the right side of her body went numb. A nurse came in to perform a neurological test.

“I failed it miserably,” Alexa said. “When I smiled, I couldn’t raise my right eyebrow.”

The doctors thought it may be a case of Bell’s Palsy, which can occur due to trauma. One doctor suggested they conduct a CT-scan of Alexa’s head and neck because she also was having some neck pain. 

“I just remember sitting in there thinking, ‘Oh my God, I can't believe the things they're actually talking about,’” Zenker said. He was taken aback because only weeks before, she was in school, unaware of the extent of her illness.

“I kind of felt like it couldn't get worse,” she said. “And then every day it just got a little worse.”

The scan showed a grape-sized abscess growing in her brain. It had to be operated on immediately.

The doctors told Alexa’s parents first and asked them if they wanted to be the ones to tell their daughter.

“There's no way, I can't, I can't do this,” Julian Casciano said. “I’ll go in there with you but you're going to have to tell her.”

Alexa took the news with strength.

“Unbelievably, she took it and kind of just said, ‘Well, then, if I need to have brain surgery then let's do it,’” Julian Casciano said.

On her 21st day in the hospital, after the lung and brain surgeries, the doctors finally diagnosed Alexa with Lemierre’s Syndrome.

After her brain surgery, Alexa didn’t have full function of the right side of her body. It improved little by little every day, except her hand, which was folded into a partial fist. Each day Alexa would try to move it a little more. The doctors said she may never be able to use it normally, so she learned to write with her left hand.

But she was an athlete who wanted to get back to volleyball.

Alexa’s stepmom, Carina Casciano, had the idea of laying her hand flat and taping it to a textbook. After two days in that position, her hand function was back, much to the surprise of her doctors.

After 28 days at Westchester Medical Center, she left the hospital. She has the number 28 tattooed on her wrist, a symbol of her experience.

The first thing she wanted to do was something she had been unable to do in the hospital: sleep on her stomach. 

Her family remained watchful.

“I was terrified that she had another abscess somewhere that no one found and it was really scary to me,” Bassett said. “I made her sleep in my bed, probably for the first week and I watched her like when she was a baby, like a newborn, to make sure she was breathing.”

Alexa kept getting better, and weeks later, she and her mother took a trip to Florida.

“The point that I knew that she would be OK is she jumped into the pool and started doing laps back and forth,” Bassett said. “You know, just testing herself and challenging herself.”

By August, she was back to playing the sport she loved.

At tryouts, her coach was surprised to see her. 

“Coach, put me in,” Alexa said.

“You don’t have to do this. I know how talented you are,” her coach said.

“No. I’m trying out. I’m doing this,” she said. “I’m earning my spot on the team like everyone else.”

She won MVP at a tournament two weeks into school, and was a starter for her entire senior year.

Alexa had always been good at volleyball, but that season she played far better than she ever had.

“It was really a transformation, and I don't know if that experience had anything to do with it,” Julian Casciano said. “But it was unbelievable to see.”

Alexa started running, and it became her therapy.

“I had this wake-up call of ‘All right, it's time to get your body healthy and in shape,’” she said. “There's not a lot of things that you can control in your life, but the way you feel is definitely one of them.”

Alexa is a sophomore at UNC, majoring in business and biology with a minor in neuroscience. She wants to become a lawyer. 

Now, Alexa functions like a normal college student, except that she gets sick more easily than others.

Her mother and father said that looking back on that time in her life is difficult for them. Old messages, photos and videos are still hard to look at.

“I don't know how I got through,” Bassett said. “I think I was kind of on autopilot and just living on adrenaline to get me through the days and nights. I mean it was one thing after the next.”

“When you're in a crisis situation,” Julian Casciano said, “you just kind of work through it for her because, you know, it's the time that you need to kind of be resolute and just do the things that you need to do as a parent to make her better.”

During her hospital stay, a nurse quoted a Winston Churchill line that has stuck with Alexa: “If you’re going through hell, keep going.”

Casciano knew then that she couldn’t give up.

“She really pushed me,” she said. “I think about that every single day.”

university@dailytarheel.com