Although she was diagnosed with leukemia when she was only 7 years old, Katie Line was considered one of the lucky ones.
Her family was able to travel all over the country in search of the best doctors and medicine. Not only did she achieve remission after months of chemotherapy and radiation, but she had what many cancer patients at the time could only wish for: an older sibling who was an exact bone marrow match.
Emily Line was only 11 when she made the choice to donate her bone marrow to help save her younger sister’s life but she said the decision was an easy one.
“I feel very, very lucky, and I feel it was the greatest honor in the world,” Emily said. “I wouldn’t have it any other way. It makes me feel very close to her.”
Now 24 years old and a University alum, Emily said she still remembers what it was like to go through the donation process.
“I was really scared because I knew my sister was really ill, but I think the scarier part was not really understanding what the transplant was all about,” she said, adding that at the time – 1989 – bone marrow transplants were not as successful or as standard as they are today.
“There were people dying all the time because the bone marrow transplant was not working,” Emily said.
According to the National Marrow Donor Program, less than half of all patients were able to find a potential match at the time Katie needed one.
Before her sister’s transplant occurred, Emily said she underwent extensive tests to ensure that she was healthy enough to donate. She then spent three days in the hospital, recovering from the operation and watching over her sister.
She said the procedure was simple overall, especially given the task it sought to accomplish.
“It’s really minimal effort. There’s a huge stigma against donating, that it’s really scary, but it really isn’t,” she said.
Emily said she has never regretted donating to her sister, who she describes as a free-spirited girl who could light up the room and never complained. Despite the transplant, Katie relapsed and later died from leukemia.
“We were as close as can be, best friends,” Emily said. “I think there were still some guilty feelings, but my family helped me get through it. The bone marrow transplant is something that you just have to hope and pray that it works.
Increased recruitment and awareness efforts, including the two recent bone marrow drives held at the University, have raised that percentage. Now 80 percent of patients are finding donors, either through the national registry or family members.
The NMDP registry lists 4.5 million people who have said they are willing to help people like Katie, who need healthy bone marrow in order to combat their illnesses.
Because of the difficulty and chance involved with matching bone marrow and since those who register are not required to donate even if a match is found, many people on the registry will never become donors.
Those who do get the chance often have a variety of questions and emotions to consider, including what the procedure entails and the risks to the donor and recipient, said University internal medicine Prof. James Ferrara, the director of the Bone Marrow Transplant program.
“People are often moved by the fact that they may have had a relative with cancer, and it’s a way of sort of giving back. Other people are moved by local drives that are put on for a member of the community who doesn’t have a match. It’s a very real and tangible way of contributing,” he said.
He added that some people decide not to donate because they are unaware of how simple and discreet the process is or because they fear hospitals in general.
“It depends upon how comfortable the donors are in general with hospital. Some minority populations have not felt comfortable with certain aspects of medical care and medical research,” Ferrara said. “I think that can hold some people back.”
Encouraging people to register is crucial to saving people’s lives, he added.
“A significant number of people have rare white blood cell types, and if you have a rare white blood cell type, it can be exceedingly difficult to find a match. The bigger the pool, the more likely you are to find a match,” Ferrara said.
“We are so grateful to the people who do donate because it makes such a difference to be able to tell a patient, ‘We found a match for you, there’s a stranger who is willing to donate,'” he added. “It still gives me goosebumps that people are willing to do that. I’ve seen how much it means to people who are desperate, and what it does for them.”
There are two procedures used to donate bone marrow. The first, in which bone marrow is pulled from a person’s hipbone, is an outpatient surgery requiring general anesthesia. The second and newer procedure, in which blood stem cells are coaxed into the blood stream, is a relatively quick process similar to getting blood drawn, Ferrara said.