Usually New Year’s Eve is accompanied by fanfare and celebration in anticipation of a better year. For 13-year-old Cara Feldman, however, that evening in 2000 not only ushered in a new year, but also launched a perilous battle with acute myelogenous leukemia (AML) that nearly took her life.
Up until that fateful night, Cara had been physically healthy, despite a delayed diagnosis two years earlier of Asperger’s syndrome, a form of autism characterized by attention, learning and socialization problems.
"On December 31, 2000, Cara had a high fever and was listless,” says her father, Morry. “At first, we thought it might be the flu, but by the next day we knew we needed to take her to the hospital,” says Sharon, Cara’s stepmother, who became her “mom” five years after Cara’s birth mother succumbed to ovarian cancer.
Their trip to the emergency room at UPMC Children's Hospital of Pittsburgh resulted in a 10-day inpatient hospitalization.
"At that time, there was a lot of mystery as to why 75 percent of her bone marrow had been destroyed,” says Morry. “It was postulated that a virus of unknown origin had attacked her bone marrow.”
Cara returned home and felt much better until late March when she became extremely ill. UPMC Children’s Hospital hematologist/oncologist A. Kim Ritchey, MD, diagnosed Cara as having AML, which is considered the most lethal type of leukemia because of its aggressiveness.
“When Dr. Ritchey gave us the diagnosis, it was a very solemn discussion,” Morry recalls. “Sharon and I had to make a choice early on that we had to go after this very, very aggressively. We were absolutely determined that one way or another, we were going to be focused on doing whatever it took to get Cara through this.”
Dr. Ritchey immediately initiated a treatment regimen involving five different chemotherapy agents. The chemo seemed to be helping her AML, but Cara developed multiple grave complications, including sepsis and a life-threatening gastrointestinal bleed. The Feldmans say they were “awestruck” at how quickly the nurses and doctors responded. After a seven-week stay at UPMC Children’s, Cara beat the odds and went home. She returned for more chemo in June and again developed serious complications, but was able to overcome them.
In October 2001, she returned to UPMC Children’s for a milder form of chemo, and her doctors were thrilled to declare her in remission. Making the decision to go full-force in the fight against Cara’s disease was an easy one for Sharon and Morry. What turned out to be a more difficult dilemma was how to balance their need to nurture their oldest daughter, while maintaining a semi-normal home life for Cara’s 3-year-old sister, Jamie. They settled on driving back and forth to the hospital every day, with support from Morry’s parents and Sharon’s father.
Miraculously, for 19 months everything was fine. Cara returned to school and the things she loved to do in her spare time — reading, computers and bowling. But in June 2003, her symptoms reappeared with a vengeance. The Feldmans had been aware of the odds of recurrence. Treating AML with chemotherapy is only successful 50 percent of the time.
As unimaginable as it seemed, Cara’s fight for her life would be even more grueling than it had been in 2001. A bone marrow transplant was her only hope for survival.
Chemotherapy was exceedingly intense once again because the doctors had to get her into remission before they could consider a transplant.
“About seven days into the chemo, she began to have seizures as a result of two brain hemorrhages. She got through that, and then developed pneumonia,” Sharon says.
Cara’s lungs had to be cleared up before the transplant, so she underwent a lengthy lung resection performed at UPMC Children’s. The surgery was successful, but Cara still had residual cardiomyopathy and her heart had become even more damaged, functioning at only 25 percent. Despite her heart problems, Cara’s doctors had to plunge forward with three weeks of radiation to her brain and spinal cord. It was the only way they could do a transplant and save her life.
The good news was that a search for an anonymous bone marrow donor had produced what looked like a near perfect match.
Her father says, “After all of these tragedies in her life, Cara finally caught a miraculous break.”
Because of Cara’s heart damage, she was an excellent candidate for an experimental “mini” bone marrow transplant (BMT) being investigated by Dr. Ritchey and Rakesh Goyal, MD. The mini-BMT is usually used in older, frail adults who cannot withstand a full transplant. Cara became the first child to have this form of bone marrow transplant at Children’s.
Now 19 years old, Cara has accomplished so much since her ordeal began. She went back to school in fall 2004, and graduated from the Katherine Dean Tilloston School. She is currently enrolled at A.W. Beattie Career Center, studying computer technology, while also holding down two part-time jobs.
From their experience, the Feldmans say they have learned that you can’t live in tragedy mode 24 hours a day.
“With all the challenges you face with your child, life doesn’t sit still,” Morry says. “It’s incredibly important for the parents to have personal time with each other and to hang on tightly to any bits of normalcy. It was also really important for us to do the things with our younger daughter that we would have done if the entire family was well. We went to her soccer games and stayed very involved in her activities. And we were sustained by our families and our close friends.”
“We are so grateful to Children’s Hospital for saving our daughter’s life,” he says. “We tell her every so often that she’s one of the star pupils who graduated from Children’s Hospital.”