It all started with a few mysterious aches and pains in April and May. Joint pain in her elbow, her shoulder, her knees.
“We chalked it up to our new trampoline or carrying a big book bag at school,” said Abby’s mom, Colleen Quinn. “But it got to be something new every day.”
A trip to the pediatrician revealed markers of inflammation in Abby’s blood, and she was referred to a pediatric rheumatologist for follow-up. Her appointment was set for June 21.
"We never actually made it to that appointment,” said Colleen.
By June 21, Abby was already fighting for her life in Golisano Children’s Hospital (GCH).
One Cold, Three Ambulance Rides, and Three Hospitals
Soon after Abby visited her pediatrician in May, she came down with a bad cold and severe sore throat that just would not go away. On June 9, she was back in the pediatrician’s office with a blood oxygen level so low, she was rushed to the local hospital by ambulance.
The team at her local hospital in Binghamton were perplexed by her condition. Though they suspected pneumonia, they just couldn’t understand why a perfectly healthy teenager couldn’t kick a cold. She was quickly transferred to Upstate Golisano Children’s Hospital in Syracuse.
But Abby’s condition continued to decline. After a few days in Syracuse, she needed to be put on a ventilator. Abby’s parents called her sister, Alex, who had been driving back and forth between Binghamton and Syracuse, to let her know Abby was about to be intubated.
“I was driving when they called me, then I ran through the hospital, hysterically,” recalls Alex. “But I didn’t make it,” she finishes, holding back tears at the memory.
It would be weeks before Abby would be awake and lucid again.
Despite trying various forms of ventilation, Abby’s health continued to fail. Her lungs struggled and she developed a blood clot in a precarious position above her heart. Eventually, Abby was transferred to GCH in Rochester.
"When Abby was first transferred to us, she was really, really sick,” recalls pediatric rheumatologist Christina E. Schutt, D.O., who oversaw Abby’s care while she was in the PICU at GCH. “There was a period of time we essentially threw the kitchen sink at her – trying everything we could to make her better."
Though Abby’s illness looked a lot like pneumonia, it still wasn’t clear exactly what was making her sick. On her second night in the PICU, it became clear that Abby didn’t have pneumonia: her lungs weren’t full of fluid, they were full of blood. That was a crucial clue that helped Abby’s doctors hone in on her true diagnosis.
"This is where the decisions that the doctors made were just phenomenal," recalls Abby’s father, Shane Quinn.
A Mystery Solved, but a Battle Ahead
It turns out, Abby has a very rare autoimmune disease called granulomatosis with polyangiitis – or GPA. Essentially, her immune system was attacking the blood vessels in her lungs and other respiratory tissues. In some cases, that can cause blood vessels to narrow, limiting blood flow. In other cases, blood vessels can become weak and rupture, leading to hemorrhages – as was the case in Abby’s lungs.
Symptoms of GPA can vary quite a bit from patient to patient, but typically start out similar to a severe cold – runny nose, congestion, sinus pain, sore throat, joint pain, etc. Though the cause of GPA is not known, there is some evidence that infections – like Abby’s cold – can kick-start the disease.
"The onset of disease can really vary between children – in terms of how subtle it is versus how rapidly they can get sick from it,” said Schutt. “Abby was on the rapidly sick end of the spectrum."
While finally confirming Abby’s diagnosis was a step in the right direction, she still had a long battle ahead of her. She would spend a rollercoaster-like three weeks in the PICU and another month on the pediatric floor at GCH. She got to know a lot of doctors and nurses from all sorts of specialties – from hematology to nephrology and even neurology.
“It was something different every day,” said Shane. “She would take one step forward and two steps back. She would get a little better, but she would never be fully out of the woods.”
At one point, Abby’s lung collapsed and she needed a chest tube. During most of her time in the PICU, she was on one form of ventilation or another, unable to speak, and she was too weak to write. There was a constant fear that a blood clot would stop her heart or cause a stroke.
Hanging over all of those fears and frustrations was the cloud of the COVID pandemic. To reduce the risk of patients contracting COVID, visitation was restricted during the two months Abby spent at GCH. Only two designated visitors were allowed in the room with Abby at a time and only one person was allowed to stay overnight.
"She was practically at death's door and we were all just trying to be with her,” said Colleen, who slept in a chair holding her daughter’s hand for 60 nights. When Abby was awake enough to communicate her needs, all she wanted was
"We would hold hands because if I woke up and had to use the bathroom, I couldn't talk loud enough, so we would have a hand squeezing code,” said Abby. “I would squeeze her hand twice to go to the bathroom. Once meant 'I love you.'"
Turning the Corner
About a week after Abby arrived at GCH, she finally started to turn a corner. Both her family and her doctors credit the change of trajectory to a treatment called plasmapheresis, in which Abby’s blood was pumped out of her body and passed through a machine to filter out harmful immune factors that were driving her disease.
Plasmapheresis, paired with drugs to suppress her immune system, helped to stop Abby’s downward spiral and keep her on a level plane. After three full weeks in the PICU, Abby was well enough to move to the pediatric floor.
Slowly, she started to feel better and her “naturally bubbly nature started to peek through,” according to Schutt. Soon, she was going for frequent “walks” around the unit (in which her family walked while she enjoyed the change of scenery from her wheelchair) and she was able to get back to at least one thing she loves: TikTok dances.
“Whether she was standing up or laying down, she was doing TikTok dances,” says Abby’s dad, Shane. "She would literally have a CPAP on her face and be doing a dance.”
Abby made steady progress during her month on the pediatric unit, with many triumphs in physical therapy and just a few scares and setbacks along the way. Finally, on August 2, she was able to go home.
A New Beginning and a New Friend
Since Abby has been home, she has been weaned off of most of her medications, her blood clots are gone, and she has gained back the 20 pounds she lost in the hospital.
"Abby had a long stay with us, but now she is doing phenomenal,” said Schutt. “You wouldn't even know she had been in the hospital or that she has any health issues. She has recovered fantastically."
Schutt and her doctors continue to monitor Abby’s progress with the hope that she will one day be able to stop all of her medications. For now, she will continue to receive infusions of a monoclonal antibody treatment, called rituximab, every six months until her doctors determine it’s no longer needed.
For Abby, it has been a harrowing year, but it hasn’t been a total loss. She gained a new friend out of the ordeal, someone who can truly understand what she’s been through.
“We found someone on the Vasculitis Foundation who lives in Australia and has the same illness,” said Abby, referring to a foundation that educates patients and families impacted
by vasculitis, a family of rare diseases that includes GPA.
The pair first connected a few weeks after Abby was diagnosed with GPA, and they’ve kept in touch ever since. Half a world away, but bonded by a common experience, they hope to meet in person someday soon.