Bone Marrow Campaign Attracts Thousands Looking To Help
At 32-years-old Louie, who had been healthy for most of her life, was diagnosed with stage four lymphoma last September.
Louie remembered the crushing feeling that overcame her last September as she entered the cancer treatment center at The Ronald Reagan UCLA Medical Center.
“In that moment it struck me that I was a cancer patient—it was the first time that I thought of myself that way,” Louie said. “I just remember starting to cry.”
After months of intensive chemo treatment, the lymphoma seemingly went away, entering a remission period. It lasted until February of this year, when the doctors found a small mass in her brain.
“That was obviously a devastating setback for us,” Louie said about her recent diagnosis.
Louie is currently undergoing another round of chemotherapy in order to treat the mass in her brain. But there is only so much chemo her body can handle, she said, before she will absolutely need a bone marrow transplant in order to help her chances of survival.
Unfortunately, finding a willing bone marrow donor is proving to be difficult for Louie. Her Asian heritage means her chances of finding a bone marrow donor are about 20 percent less than if she were Caucasian, according to The National Bone Marrow Program.
Dr. Gary Schiller, the director of the Bone Marrow/Stem Cell Transplantation Program at the Ronald Reagan UCLA Medical Center, said there are a number of reasons that minorities, and in particular Asian minorities, have a harder time finding a bone marrow match.
“It’s been hard to get the Asians to register,” Dr. Schiller said. “In their home countries, there are a lot of myths and superstitions about donating bone marrow…and there aren’t so many [Asians] in The United States that we can make a deep impact on the registration.”
Since bone marrow compatibility is genetic, it tends to cluster within ethic groups, so finding a match is often closely linked to one’s heritage, Dr. Schiller explained.
Louie was not able to find a match within the national bone marrow registry or within her group of family and friends.
Louie, who had been incredibly private with her battle with cancer, was faced with a choice—continue to be private about her illness or go public with the hope that she might find a bone marrow match.
“At a point of vulnerability like this, you do not typically share that with the world,” Louie said about her struggle with the choice.
Ultimately, Louie decided to go public and with the help of her family and friends launched Savenina.com.
Friends of friends and people Louie did not even know began to spread the word. Soon celebrities like chef Mario Batali, NBA star Jeremy Lin, and Facebook COO Sheryl Sandberg began to tweet about the campaign.
“All of this just kind of happened all at once. All within a week or two of her launching the campaign and news has really spread from there,” Khong said.
Khong said that the amount of support has been overwhelming. People from all over the world are sending Louie messages of encouragement and asking how they can help.
One message that stood out for Khong was a woman from Finland, who messaged the campaign telling them that she would be in San Francisco the next week for vacation and wanted to attend a bone marrow drive.
“That’s one of the messages that really touched me and I know really touched a lot of us,” Khong said about the woman from Finland. “That a complete stranger on the other side of the world would take time out of her vacation to do this.”
Shin Ito, the director of Asians for Miracle Marrow Match (A3M), an organization that assists in finding donors for minorities and specifically Asians, and has also helped organize bone marrow drives for the Save Nina campaign, said that he has never seen a response quite like this before.
“It’s just how quickly the campaign has taken off,” Ito said. “We have received more international requests for home registration kits or asking for information on how they can be a donor in the country that they live. We’ve received more than I can’t even tell you compared to other campaigns.”
Despite the overwhelming response to the Save Nina campaign and the thousands of people who have been typed, Louie has yet to find a bone marrow match, but remains very hopeful.
“I’ve realized in the process of the campaign and in the process of opening up to the public that it really has given me a lot of strength,” Louie said. “And I think that it’s really given a lot of strength to other people as well.”
Louie also said that once her cancer treatment is over and her health has improved, she plans to continue her work of educating people about the process of donating bone marrow.
“I think that this campaign is much larger than me now,” Louie said. “It seems like such an incredible moment to have this audience, and to be in the position to help people and inspire people to give blood and raise awareness for this cause.”