In the midst of Imani Cornelius’ difficult treatment for myelodysplastic syndrome, her doctor made a pledge: When she was healthy again, they would go kayaking together on the Mississippi River.
The doctor, Pediatric Blood and Marrow Transplant Physician Jakub Tolar, MD, kept his promise. At the end of July 2016, the two set out on the river from a landing within sight of University of Minnesota Masonic Children’s Hospital, where Imani was treated.
Myelodysplastic syndrome (MDS), sometimes called “pre-leukemia,” is a bone marrow disorder that occurs when the stem cells in bone marrow develop into abnormal white blood cells, red blood cells or platelets. These abnormal cells soon die, leaving less room for healthy blood cells to develop. In about one third of cases, MDS leads to acute myeloid leukemia.
Treatment for the disease varies depending on the patient’s age, overall health and severity of the disorder. A blood and marrow transplant, which replaces the abnormal stem cells with healthy ones from a donor, is one option.
Patients are most likely to find a matching blood and marrow donor in someone with similar ethnicity. But, for mixed-ethnicity patients like Imani, the odds of finding a match are more difficult. Just 4 percent of the 11 million people listed on the donor registry come from mixed ethnic backgrounds.
For six years, Imani’s family searched for a donor. And when a donor was identified, Tolar performed the blood and marrow transplant. The procedure was successful; Imani’s myelodysplastic syndrome is currently in remission.
“I told her that I kayaked to work a couple times a week. We made a deal, it was her idea not mine, that once the transplant is done and successful for real, which it is today, that we will go together on kayak,” Tolar told WCCO.
“The goal of being able to kayak on the river with my own doctor seemed unreal. It seemed like a dream that couldn’t be achieved. The fact that I’m doing it now, it just shows that I can do anything,” Cornelius told WCCO.