Student longs for normalcy after life-threatening illness
PROSPECT — Alexis Barbati has ridden a bike a thousand times. No, more like a million.
This time is different.
Her emaciated legs struggle to generate enough force to push the pedals, but she manages.
As she rides, she feels the warmth of the sun bathe her and braces against the breeze that whips at her face.
And she smiles. A big one. A smile usually reserved for the monumental moments of a normal life. Not for pedaling a bike down a back road of a small town such as Prospect.
But she doesn't take this experience of riding a bike lightly as she had the 999,999 times before.
“You go through something like what I've gone through,” Alexis said, “and the little things become big things.”
Riding a bike. Eating spaghetti. Cooking. Shopping. All mundane things.
But not to Alexis. Not after a battle that she continues to wage against a rare disease that few can even pronounce — Hemophagocytic Lymphohistiocytosis.
It's called HLH for short, and it is an insidious disorder of the immune system where the body's defenses against an illness cannot “switch off” once the job is done.
“My immune system keeps going,” Alexis said, “even when it should stop.”
And in Alexis' case, it came on as quickly as a bike ride.
Alexis celebrated her 19th birthday Feb. 28 with her parents.The night before she went out with friends to celebrate in the city of Kent, Ohio, just a mile from Kent State University where she was enrolled.Her friends that night noted how rundown and ashen she looked. The next day, Alexis was sluggish and even more pale.“I was out the night before,” she explained.Her parents, Al and Marsha Barbati, nodded.“It made perfect sense to us at the time,” Marsha said. “But in hindsight you see the signs. She wasn't herself. She wasn't right.”On March 4, the fight for life began.Her fever had spiked to 104.7 degrees. She was sweating and shaking.Her roommate and fellow 2014 Slippery Rock High graduate, Sarah Kadlubek, knew something was seriously wrong.“Alexis,” Sarah said. “You really need to go to the health center.”The doctor there diagnosed her with mononucleosis. She told her she would be “really sick” for six to 12 weeks.“But you'll be fine,” the doctor said.Alexis wasn't.She struggled to roll out of bed the next two days. She made it to just one class.It was then that she decided to go home to Prospect to nurse herself back to health.She thought she'd bounce back in a couple of days and head back to college.Alexis never made it back to campus.“It just kept getting worse and worse and worse,” she said.A trip to the emergency room at Butler Memorial Hospital brought a dehydration diagnosis.A second trip to the Butler ER March 16 alarmed doctors and she was admitted to the intensive care unit.“The hematologist there knew something was wrong right away,” Al Barbati said. “The doctor said, 'Her blood work is crazy.'”Doctors were baffled by the eclectic array of symptoms and the curious results of the blood tests.Little did they know Alexis' body was “eating” itself. Her overactive immune system had begun nibbling away at her organs, primarily her liver, lungs and stomach.Early in the morning of March 17 the decision was made to send Alexis to Children's Hospital of Pittsburgh.She spent the next nine days under sedation and on a ventilator.“I feel awful that my family had to see me those days that I was sedated,” Alexis says, “but I'm so thankful I was not awake for any of that.”It took two days after her arrival before a team of doctors came to a definitive diagnosis.
Alexis was clinging to life.“They told us she got (to Children's Hospital) just in time,” Al Barbati said.Late on the first night Alexis was a patient at Children's, Marsha Barbati spoke with Dr. Erika Friehling, a pediatric hematologist/oncologist who was part of a team of physicians trying to pin down a diagnosis.“We'll have a team meeting tomorrow,” Friehling told Marsha. “We have a checklist, and we're doing that right now. I'm almost certain it's HLH.”That was the first time Marsha had heard those letters.The next day, Friehling was even more certain of her diagnosis after she had sent the test results to Children's Hospital of Cincinnati, the hub for HLH research and diagnosis.“It might take two to four weeks for the results to come back, but we can't wait,” the doctor told Al and Marsha Barbati. “We have to start treatment now.”“She used the word 'chemo,'” Al said, “and we died.”According to the Histiocytosis Association, chemotherapy is a common treatment for HLH, as is immunotherapy, steroids, antibiotics and antivirals.HLH is rare, affecting fewer than 200,000 people worldwide and most cases are caused by genetics — defective genes inherited from one or both parents.In Alexis' case, her HLH was not caused by a genetic abnormality, but from some other cause, which may never be completely known.The Histiocytosis Association says “Secondary HLH” may be associated with vaccinations, viral infections and other underlying diseases.The theory in Alexis' case is she contracted a case of mono which triggered the HLH.Alexis' treatment was aggressive.While she was sedated, she underwent three days of plasmapheresis — her blood was filtered and cleaned of the damaging antibodies and put back into her body.“After the third day, she started coming around,” her mother said. “It was really huge for her.”On March 26, nine days after she was admitted to Children's Hospital, Alexis awoke and the ventilator was removed.“That's when I heard, 'HLH,'” Alexis said. “Then I heard, 'chemo.' I freaked out because I thought I had cancer.”Alexis underwent 11 chemotherapy sessions between March 19 and May 30.Alexis didn't want to watch her hair fall out in clumps. She choked back tears as she told her favorite two nurses at Children's she wanted to shave her head.“It was tough,” Alexis says, her voice trailing. “Very tough.”Even when she was in her hospital room alone or with her parents, she covered her head with a scarf or a hat.Then she reached an epiphany and shed the self-consciousness — along with her cap.“I just realized hair is the absolute least of my worries right now,” Alexis said. “There were a lot of other things I needed to be thankful for and focusing on other than how I looked.”The chemotherapy was working. Her immune system, once ravaging her body, was quiet. Hitting the “reset button” had worked.Alexis was released from the hospital April 12.But she had more obstacles to tackle.On May 20 she was admitted to Children's Hospital again with lesions on her brain and spinal cord. It was unknown then whether it was related to HLH or an opportunistic virus attacking her weakened body.Alexis spent 10 days in the hospital receiving steroid treatments to shrink the lesions.The treatment worked and Alexis was released May 30. But it left her wondering what could happen next.
Alexis was a cheerleader from a young age, even after suffering a horrific broken arm in the sixth grade while cheering.She took pride in always having a smile on her face, on always being positive — perfect qualities for a cheerleader.And for fighting a rare, serious illness, it seems.“I feel like I've always been an upbeat, positive person,” Alexis said. “But more than anything, my family and friends have gotten me through this.“I've known all my life I've been blessed with amazing people in my life, but through this experience, I have been overwhelmed by the amount of love and support I've received.“They gave me the strength that I needed to be in the hospital all those days,” she adds, fighting back tears, “when I was scared and confused.”There were times, mostly late at night, that Alexis questioned her faith.She asked the usual question: “Why me, God?”Her deep faith gave her the answers.“I definitely have had my bad days when I felt like I lacked faith,” she says. “But I ultimately know that God is in control and my relationship with Him has grown so much through this.”
Alexis weighed 149 pounds when her ordeal began.She was down to 119 pounds on her 5-foot-7 frame at one point during her treatment.She goes to physical therapy three times a week to try to regain the tremendous amount of lost muscle.She longs to be “normal” again.“Your 'normal' completely changes,” Alexis said. “Every aspect of my life has changed. It changed in the matter of weeks.”She takes nothing for granted.And for that, she has an overwhelming feeling of gratitude.Yes. Gratitude.“I told my parents I wouldn't have chosen to go through this,” Alexis said, smiling. “But I couldn't imagine having not gone through this. It has completely changed my perspective on so many things. I think it is, overall, going to help me grow as a person.”Alexis is healthy, relatively speaking, now. Her HLH has not returned, and she is getting stronger each day.But the specter of the disease is always looming. If it returns, Alexis may require a bone marrow or stem-cell transplant.She knows the risks. She knows the odds.She is working hard to get back to “normal,” whatever that will be for her going forward.“I feel like things are coming back to me,” she says. “I can do basic things. But I long to do those normal things again. I will do them. I know I will.”Riding her bike reminds her of those “normal” days.The pushing of the pedals reminds her to keep moving forward.
