“Minorities need to step up to the plate. If more of us had, my daughter might not have lost her life today.” The “plate” Luis Lopez is referring to is registering to be a marrow donor through the Be The Match Registry®. The registry seeks to match marrow donors with patients needing a transplant, such as those suffering from leukemia and lymphoma – people like Lopez’s daughter, Lily Marie. Lily, who was 17 and from Brownsville, had been battling acute lymphoblastic leukemia (ALL) for four years. In that time, she underwent three years of chemotherapy to keep her cancer at bay while the search was on for a donor. One finally was found – but was unavailable to donate. In May, Lily underwent an experimental procedure with a 50-percent marrow match from her brother. She’d been hospitalized in San Antonio ever since and passed away the morning of Tuesday, Aug. 26. Lopez spoke last week, while his daughter still was fighting for her life. “If we had more donors on the registry, my daughter wouldn’t be in this situation. It’s really hard for me to see her this way,” Lopez said. “I do not want her suffering and everything she’s gone through to be in vain.” The reason Lopez is specifically calling on minorities to donate is the respectively low number of those groups on the registry. “Because the markers used in matching are inherited, patients are more likely to match someone from their own race or ethnicity,” said Jon Hudson, marrow recruitment supervisor at the GenCure Cellular Therapy Center, which houses the local Be The Match registry. “Adding more donors from diverse racial and ethnic backgrounds to the Be The Match registry increases the likelihood that all patients will find the match they need.” Even for people who can’t be marrow donors, there are several ways to help, such as volunteer opportunities and making financial contributions. The cost to add each donor to the registry is $100. According to 2013 National Marrow Donor Program statistics, Hispanic patients needing a transplant have a 72 percent chance of finding a match on the donor registry; African Americans have a 66 percent chance; Caucasians have a 93 percent chance. A 2012 study by the University of Pittsburgh School of Medicine sought to examine exactly why there is such a gap for minorities willing to donate marrow. It concluded that race- and culture-specific factors such as religion, mistrust of the health system and discouragement from peers and family to donate were factors preventing a more diverse registry. In other words, many myths about donation seem to persist. “I want to inform the public about this need,” Lopez said. “It’s the reason Lily’s in this crisis. I want to make sure that we can bring her mission to light and get people educated.” All it takes to register are a few cheek swabs, he said. And if someone is called upon to donate and save a life, the procedure is safe and discomfort generally is minimal. Lopez said one of the most difficult things he’s had to do in his life was tell Lily she had cancer. But she’d been nothing but a fighter since. “She wants all of this to become a positive. I told Lily she didn’t have to (go through with the experimental procedure), but she said she was doing it because she wants to save other children. She said she wanted to make a difference in the medical community,” he said. Lily had had plans to attend college this fall. “She wanted to be an oncology nurse. I have a daughter who’s sacrificed her life to make that sort of impact.” Lily said it best herself when she wrote this on her Facebook page last year: “Most kids wish for a new iPod or cell phone, while kids like me are wishing to find a marrow match so we could have the chance at a normal life. But that won’t happen unless more people are willing to step up and register with Be The Match to become donors.” Lopez, his family and supporters also are wishing – for people to understand marrow donation. Yvonne Ybarra, director of the GenCure Cellular Therapy Center and the local Be The Match registry, and her team grew close to Lily while she was searching for a marrow donor. The team helped the Lopez family understand marrow donation and organize drives to register donors. “We’re so humbled to have been invited to be with Lily in her final moments. It was such an intimate time, and we’re forever grateful for our time with Lily,” Ybarra said. “When Lily first came to Be The Match, she had such determination and persistence to make a difference, to educate the Hispanic community about the need for more donors. It was never about herself. She said that if the community could learn from her, then she wanted to be the one to educate. She was only 17 years old and made such an impact on so many people’s lives.” “Lily wanted to bring awareness,” Lopez said. “We’re 100 percent committed to educating people about becoming marrow donors so that others can be helped.” You can join the registry in honor of Lily by going to join.marrow.org/teamlily. Contributions can be made in her honor at bethematchfoundation.org/goto/teamlily. PLEASE FOWARD MY DAUGHTER STORY TO YOUR FACEBOOK CONTACTS AND #DOITFORLILY
Posted on: Sat, 11 Oct 2014 05:34:22 +0000
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