Posted on Apr 06,2018
“I went to sleep in January, and I woke up in March,” 19-year-old Agata recalls in her signature soft voice. “I don’t remember any of it.”
That might be just as well.
Looking healthier, though still moving a little cautiously, Agata is sharing her incredible story of a coma, chemotherapy and recovery as the “Patient Master of Ceremonies” at a fundraising event called Swim Across America April 14 at North Shore Pool in St. Petersburg, Florida. The event raises money for cancer research and clinical trials. Funds will go to Moffitt Cancer Center and Agata’s hospital (and second home for the past year), Johns Hopkins All Children’s Hospital.
But when she was asked by Sarah Haines, R.N., clearly her favorite nurse, to speak at the event, Agata knew she would have to rely on photos, videos and the recollections of her family because much of the second chapter of her story was spent in a coma.
For chapter one, “Agata was diagnosed with very high-risk acute lymphoblastic leukemia (ALL) in November,” Haines explains.
It was the Thanksgiving weekend of her senior year in 2016 to be exact. With tiny little tendrils of dark hair poking out of the pink knit hat that still hides a few bald spots caused by the chemotherapy, Agata shares her story from beginning to end with the help of her parents who witnessed it all.
It had all started with a strange pain in her hands and legs. Then the coughing.
Agata’s family spent a frantic few days running back and forth to doctors and emergency centers near her hometown of North Port in Sarasota County trying to determine why she hurt so much. Why she had been coughing so hard for weeks on end.
“They did every test possible and everything came back negative," her dad, Andy, recalls. "Then they told us there was one last test they could try: bone marrow.”
Her primary doctor, Mateusz Zagata, M.D., referred the family to Johns Hopkins All Children's a few hours north, up Interstate 75, for answers. It was a trip they would make almost daily for the next year. At least one of those drives would leave them wondering, as the miles ticked off, if Agata would still be alive when they arrived.
Harsh but effective chemo treatments would take a lot out of petite Agata during that first year. She became very weak and was almost always sick from nausea. There were sores in her mouth and she was susceptible to nearly every little thing that floated past her in the air.
She was thrilled when her first year of treatment was complete, she was considered in remission and told the roughest of chemo treatments were behind her.
She decided to celebrate with a cautiously planned vacation to visit a friend in New Jersey. Agata was careful to wear her face mask, use lots of anti-bacterial lotion and keep her distance, but somehow she managed to catch a bug on the way home.
Her parents, who appreciated the excellent care she was getting at Johns Hopkins All Children’s, put her in the car and made that long drive up I-75 one more time to make sure she wasn’t too weak to handle the virus. Agata was diagnosed with adenovirus, a respiratory illness. Things got worse and there were several visits to the Emergency Center for what had become bacterial pneumonia. This is where things get a little hazy for Agata, who was soon transferred to the pediatric intensive care unit (PICU) and placed on a ventilator for respiratory distress. Already in a weakened state from a year of chemotherapy, Agata's condition kept getting worse as she slipped restlessly into a coma.
“Her respiratory status only continued to decline over the next couple days, and Agata had to be placed on extracorporeal membrane oxygenation (ECMO) and transferred to CVICU,” Haines recalls.
Agata’s worried parents received a call in the middle of the night that things were getting rough. “Dr. David Kays, who is in charge of ECMO, called us into a conference room, sat us down and put a piece of paper in front of us to sign,” Andy recalls, shaking his head. He and his wife, Edyta, were terrified. “Dr. Kays explained that our signing off on the ECMO was the last chance to save her. We signed immediately. We trusted him completely.” They knew they might not see an improvement for several weeks.
Before and throughout her ECMO, Agata suffered a seizure and brain hemorrhages (not unusual for this procedure, which attempts to allow her heart and lungs to rest and recover). She also had nightmares. The kind that involve bugs and lots of squirming.
“She was on ECMO for almost the entire two weeks,” Haines adds as she helps the family share their story, then she jumps from her seat and runs over to hug Agata, whom she has not seen since the coma. “When I heard they put you on ECMO, I cried,” Haines tells Agata. “I promise to never be afraid of anything after what you’ve been through,” she says. “You’re a walking miracle.”
Agata nods. She knows.
“Dr. Kays normally works with babies, so I was lucky to have even been in that cardiac unit,” Agata says, taking over her story at her favorite part. Her mom adds that the ECMO machine, normally used on preemies and newborns, had parts that wouldn’t even fit her. A large arterial cannula had to be immediately ordered.
“I owe Dr. Kays a lot. He met me, but I never met him,” she laughs, then gets serious. “I am just so grateful because I got to go to Johns Hopkins All Children’s. If I was at a different hospital I don’t know if I would have even survived my situation. I’ve seen the photos and there are so many machines in that room. The ECMO—that’s the machine that saved my life.
“My parents were so scared. My heart wasn’t even beating on its own,” she says wide-eyed.
“I wasn’t breathing on my own. My big brother was so scared, he couldn’t even visit me, but my little brother came.”
Agata seemed to drift in and out of her coma. She recalls seeing her aunt in a blue jacket—which actually happened—and had bits and pieces of actual conversations woven into dreams or hallucinations while she was hooked up to so many machines. She also recalls being told how hard she fought. She pulled out wires, ripped off masks. She was sure, she tells you, that bugs were crawling on her.
It was a crazy adventure that only now offers some excitement in the sharing because she can say she survived it. Not many thought she would. Her parents said she was on ECMO for days before Kays would budge even a little and say, “Things seem to be improving.” They understood he didn’t want to offer false hope. They gave Agata two weeks on the machine to survive. She barely made the deadline.
Eventually, slowly, over a three- or four-day period, she started to wake up, grudgingly accept her surroundings, and stop fighting all of the machines. It was nearly a week before she could speak or communicate. Her family, exhausted, was thrilled and stunned to have her back.
Already a page-turner, Agata’s story is not over yet.
Now that she has recovered from the bacterial pneumonia and is regaining her strength, she must return to her chemotherapy schedule for at least another year. The good news is, for now, that means a daily pill that keeps her out of the hospital and gives her a chance to step, however lightly, back into her own life. Somehow during the rough chemo treatments in the first year, Agata managed to not only finish her senior year, but to attend her prom and—with doctors allowing a little cheating on her treatment days—graduate with her class.
She may be small. She may be soft spoken, but don’t count her out. She’s a fighter. Very aware of what she has been through already, she now knows full well what she is capable of, and Agata is ready dive into that next chapter with grace, ferocity and a little green nail polish.
Visit the Johns Hopkins All Children’s page to support the hospital at Swim Across America.