Beyond Leukemia: Alex's Story

Just six months earlier, Alex had measured her physical fitness in terms of medals, not minutes. She was a high school track star, competing year-round. She’d made All-State. She’d been to Nationals.

Then something strange started to happen.

“I was getting slower in my times. I felt tired all the time,” she says.

Her cross country coach recommended a blood test for athletes. When the results came back, it was by urgent phone call: Her hemoglobin was much too low. 

At Connecticut Children’s Center for Cancer & Blood Disorders, pediatric hematologist/oncologist Natalie Bezler, MD, shared the heart-wrenching diagnosis: acute myeloid leukemia (AML). AML is a deadly, fast-growing type of blood cancer. 

What are the latest advancements in pediatric blood cancer treatment?

Someday, with the help of groups like Connecticut Children’s Research Institute, a blood cancer/AML diagnosis will hopefully have more treatment options: For example, Connecticut Children’s partnership with The Jackson Laboratory is pushing the boundaries of genomic research, which could transform how we approach treatment for blood disorders and cancer.

For now, though, AML’s main treatment is aggressive chemotherapy. Alex would not be going back to track practice, or high school classes, or her regular teenage life anytime soon.

Trying to downplay the news, Alex texted her friends: “Guess who has cancer? Me.”
 

Instead of presiding over the hallways of Danbury High School as a senior, Alex spent the next months in isolation at Connecticut Children’s or at home, undergoing four rounds of chemotherapy.

At Connecticut Children’s, experts like Dr. Bezler can customize cancer treatments based on a patient's unique genetic profile, selecting the most effective drugs and combinations based on specific cell mutations. The plan for Alex worked: After four rounds, the cancer was gone.

But after completing that fourth and final round of chemo — the date Alex had hoped would mark a return to life as usual — her body began to fall apart in other ways. 

It was a steep and frightening decline: First, she went into heart failure. She developed a serious lung infection. Then she began to go into septic shock, a critical condition even with the best medical care. The odds of her survival grew slimmer and slimmer. 

Luckily, she was still under the care of Connecticut Children’s. And Connecticut Children’s critical care experts are used to defying the odds.
 

In the days and weeks that followed, Alex was surrounded 24/7 by pediatric specialists who knew exactly what to do in a medical crisis — and how to turn around the toughest situation. In the part of her still clinging to awareness, Alex was right there with them.

“I was just a shell at that point. Still, never once did I think I was going to die,” Alex says. “Maybe it was delusion, but I was determined to survive.”

Through the miracles of teamwork, medical technology and true grit, she did. She spent the next five weeks in Connecticut Children’s pediatric intensive care unit (PICU) clawing back her health, little by little.

For most of that time, she considered herself under the command of Connecticut Children’s physical therapy team, especially an expert named Kim. “I loved Kim,” Alex says. “She was my military commander.”

Compared to her track days, the exercises should have been easy: Arm circles. Seated marches. Inching a walker around the hospital room. Yet she had to dig deeper than ever before, physically and emotionally.

“I was so uncomfortable in my own skin,” Alex remembers. “My muscles were so weak. I couldn’t walk for a minute without my heart rate skyrocketing.”

Her sports mentality wouldn’t let her give up, though — and neither would Kim. So Alex kept pushing. She began to trust that, with enough time and effort, she could reclaim her old strength. Maybe she’d even surpass it.

By late March 2020, when she walked out of Connecticut Children’s, she’d started doing pushups in her hospital room.
 

Last year, a 21-year-old Alex burst through the finish line at West 67th Street in Central Park. After 26.2 miles and more than three hours, she’d completed the New York City Marathon — her first.

Besides running, she swims. And goes to spin class. Plus hot yoga and Pilates. Also, she lifts weights.

All this exercise is mostly because she can: She’s fulfilling the promise she made to herself back in that Connecticut Children’s hospital room. In part, it is also because she should. 
 

What is the link between chemotherapy, heart failure and heart disease? 

With her health history of chemotherapy plus heart failure, Alex knows she is at a higher risk of heart disease. Next year, she’ll start receiving care from Connecticut Children’s award-winning adult congenital heart disease (ACHD) services. 

Meanwhile, at the Center for Cardio-Oncology and Innovation for Cancer Survivors, she already sees pediatric cardiologist Olga Toro-Salazar, MD, for everything from heart imaging to lifestyle advice — like the importance of exercise.

Soon, Alex will be the one providing care. A few months ago, she started a masters program in clinical exercise physiology. She plans to focus on cardiac rehab.

“I can relate to these patients. I think I can offer a little bit of hope too, show them there’s something on the other side of their illness,” Alex says. She recently celebrated five years in remission.

When she flashes back to that frail, 16-year-old version of herself in the PICU, then forward to now — marathoner, college graduate, sky diving enthusiast — it all seems Beyond Imagination.

“Despite all the odds against me, with the support of the incredible team at Connecticut Children’s, I fought through the deepest, darkest point in my life,” Alex says, “and I’m making the most out of my life right now.”