It was June 2002 and Mary maternity leave had ended. She planned to return to work on Monday, but her 13-week-old daughter, Sydney, had a stuffy nose and a mild fever. Frustrated, Mary knew she couldn’t take Sydney to daycare on Monday if she still had the fever. She took Sydney to Urgent Care for what she thought would be a quick diagnosis of an ear infection and a follow-up trip to the pharmacy for antibiotics. Instead, it was the first step in her infant daughter’s journey with cancer.
Upon examining Sydney, the Urgent Care physician on call was concerned. Unfortunately, it was a weekend so they didn’t have the full staff to run all the blood tests he wanted. He prescribed some antibiotics and told Mary to take Sydney to her pediatrician first thing on Monday.
Since Mary was returning to work on Monday morning, her mother and her husband, Kevin, took Sydney to the pediatrician. Mary waited anxiously at her office to hear how things were going. By noon she still hadn’t heard anything and literally started to feel ill. Minutes later, Kevin called and told her that Sydney had an extremely high white blood count and that she probably had leukemia.
“He told me to meet him at the hospital emergency room for further testing,” said Mary. “I ran out of the office.”
And so began a series of days in the intensive care unit with placement of a central line next to the heart, body scan, bone marrow, and blood tests of all sorts to figure out just what type of leukemia Sydney had. Within a few days came the final diagnosis — acute myelogenous leukemia (AML) — and that’s when they realized just how unusual Sydney’s situation was. It was rare enough that an infant would have leukemia in the first place, they were told, but this type was exceptionally rare.
The hospital physicians wanted to begin treatments immediately, and so did Mary and Kevin. Various protocols were discussed, with all roads eventually leading to an umbilical cord blood transplant that would take place at the University of Minnesota, physicians told them. Rather than waiting through rounds of chemotherapy, Sydney’s family immediately took her to the U of M to meet with Drs. John Wagner and Brenda Weigel to discuss Sydney’s treatment and the details of the transplant.
As parents, they already knew Sydney’s case made her cancer treatment highly specialized and, in the case of a cord blood transplant, highly likely that she would relapse. What they didn’t know, however, was just how dangerous the transplant process was and that the survival rate for infants was a mere 50 percent.
“We were stunned. We were told that no one had much experience working with children this young because they simply didn’t survive,” said Mary tearfully. “It was the hardest news we’d heard up until then, and all we could do was pray for the best. As it turns out, that’s exactly what we got at the University of Minnesota.
By supporting the University of Minnesota’s Stem Cell Biology Program, Children’s Cancer Research Fund is enabling the University to continue its pioneering efforts in umbilical cord blood transplantation. This support enables researchers to expand their umbilical cord blood studies to further develop novel approaches for treating pediatric cancer patients like Sydney who require marrow transplantation.
Meanwhile, back at home in Lake Elmo, Minn., Mary’s parents had moved in indefinitely to help take care of Sydney’s older brother, Spencer, who was just 16 months old. Mary and Kevin rotated in and out of the hospital along with her parents, never leaving Sydney without a family member.
Weeks went by as they waited for the perfect cord blood match. It finally came, along with pages of possibilities for excellent back-up matches. “It was the best possible scenario we could have imagined,” said Mary, remembering the joy they felt at the time.
In addition, because they were being treated at the University of Minnesota, one of the leading pediatric cancer research facilities in the nation, they were offered the unique opportunity to participate in a study using mesenchymal stem cells in the transplant. The goal was to determine whether these stem cells might make the transplant safer. Mesenchymal stem cells are cells that can become the “nursing” cells of the marrow, which might help the bone marrow recover more rapidly after transplant.
“There were so many unknowns, but in the end we opted to participate because we knew if we didn’t we might be passing up the best chance of all to save our daughter,” said Mary. As it turned out, Sydney was the first in the world to receive mesenchymal stem cells from an unrelated donor.
“Sydney was not only the first infant to receive these new stem cells, but she remains the only one to date,” said Dr. Wagner. “Knowing this, the stem cell world continues to watch Sydney closely.”
The Wall Street Journal even called the Scotts for an article on patient participation in clinical trials with the focus on “being the first.” “She’s a bit of a celebrity in the world of stem cell transplants,” Mary said with a smile.
Sydney recovered quickly, never relapsed, and a month later she was released from the hospital. One year after the treatment, the Scotts were finally able to smile again. Sydney had been home for several months and had made it through several scheduled follow-up hospital visits and occasional admissions.
Today, Sydney is a healthy 6-year-old girl and hasn’t seen a doctor in years except for her regular well-child visits. She reached five years of cancer survivorship in September 2007. When she sees pictures of herself as a baby in the hospital, she can’t believe it’s her. “It’s fine with us if she doesn’t remember any of that,” Mary laughed.
<< Back to Meet the Kids
