Meet Kerry Magaña, a typical 14-year-old young girl with lots of friends and siblings. Once, Magaña was more concerned with sibling rivalries and the intrigues and plays of her circle of close friends. She experimented with mascara and nurtured her long black hair. But that changed when she was diagnosed with ALL Leukemia in the fall of 2006. Now her pixie good looks and stature belie the tallness of her spirit.She had a relapse in December of 2007 and now the family faces a life and death situation. Doctors say that she has a 20 percent chance of survival given an appropriate bone marrow donor match, a possibility made difficult by the paucity of Hispanic and Latino registered donors. On Sunday, February 17, a three-hour bone marrow drive brought possible donors to Bales Baptist Church in the Northeast area of the city.Twenty-three people turned out despite the winter weather conditions to register as possible donors. Magaña was happy that people did come out despite the bad weather. “It is a little disappointing that more didn’t come but we are planning on having another donor drive. My goal is to get more people involved. I want to get the message out to everybody to get registered. It is not just for me but for a lot of other kids that need it too.”Even though she is fighting leukemia, Magaña does not dwell on her sickness. Instead her focus is on the other children that are in the hospital sick with leukemia or other types of cancer. “Before they told me I had cancer, I didn’t pay a lot of attention to the fact that other kids had cancer. It has opened a lot of things up. I see things differently. Just go to the hospital. There are lots and lots of kids and adults that are living with it and not a lot of people pay attention to it.”“My daughter has a big heart,” said Claudia Sabrera “She wants to help others and she goes to the hospital to visit the other children there. She is like a butterfly, she goes from room to room visiting and asking each one how they are. This is her way of showing her love for the people in the hospital.” Knowing that she would be losing her hair during her chemotherapy treatments, Magaña decided to cut her hair before the treatments so she could donate it for wigs for other children. Magaña donated 13 inches of hair and her sister Genesis donated 11 inches.She was disappointed by the reactions of some of her peers and struggles with the questions other children posed to her about why is she bald. “It hurts, even today it still hurts. I have people ask me if I am a boy or a girl. I was really sad when I lost my hair,” recalled Magaña.She feels that God has given her this disease for a purpose. She told Hispanic News that she thinks her purpose is to educate the Latino community about what a bone marrow donor is and how they can get registered in order to help others.Her mother understands how other Hispanics feel when they are asked to donate. “We don’t know what it means by bone marrow transplant. Hispanics believe that they are going to pull out a piece of bone to transplant. They believe they will be handicapped. … They think that if they do this they will die, but we will live. We do not have enough information to know what the transplant is about. The fight does not stop here. We will work hard to get the word out that my daughter needs a transplant. If God is willing he will send me a person who will help my daughter fight this disease,” said Sabrera.Potential donors must be between the ages of 18 and 60 years old and meet health guidelines. The screening test costs $52 and insurance does not cover the procedure. A small blood sample or swab of cheek cells is taken and tested to determine the donor’s tissue type. Potential donors also complete a brief health questionnaire and sign a consent form to have their tissue type listed on the Registry.Because tissue type is inherited, patients are likely to match someone of their same race and ethnicity. There is a need to recruit donors who are Hispanic/Latino, African American, American Indian, Alaska Naïve, Asian, Hawaiian or other Pacific Islanders.“We have to get people to understand the importance of becoming a bone marrow donor,” said Danielle Wilson, a volunteer at the registry desk. Wilson herself is a recipient of bone marrow and is happy that a person thought enough to register and help someone in need.“My donor is a Hispanic male who lives in Texas. I am overjoyed that somebody thought well enough to give of themselves. He said it was a painless process and he would do it all over again for somebody in need,” said Wilson.She knows the tough road that is ahead for Magaña but told Hispanic News that she will be there to help her in any way that she can. Before the leukemia struck her body, Magaña was a typical teenager, chatting with friends on the telephone, she liked to dance, she did her homework and she would help her mother around the house.“She came down with a fever and I took care of her in the house for a week but it would not go away. I did not imagine the worst. I took her to the doctor imagining that it was an infection. He advised me to take her in by Friday of that week if her fever did not go away. Her fever was so high when I took her to the doctor that they thought it was pneumonia and they gave her a pill treatment for five days,” said Sabrera.Kerry’s fever continued and after following back and forth with the doctor she was finally told to take her daughter to the hospital for tests. They ran tests and sent her home but had them come back the following day for the test results.Sabrera was unprepared for the news that she received as she sat on the bed next to her daughter. “It was like they were tearing my heart out. I felt crazy and I did not know what to do. It was such a wrenching pain, like your heart is being torn out slowly. I felt that my daughter is dying.”Another parent understands the emotions that Sabrera is experiencing. Michael Quijas' fifteen year-old daughter was diagnosis with leukemia. “It is almost like we have joined a fraternity of parents whose children are battling sickness. Anything that I can do to get the word out is what I have decided to do.” His daughter, Kaylee, does not need a bone marrow transplant. “She is getting ready to go into maintenance and then they start to see if it comes back or not and if it does come back, then we have to look into other options like bone marrow.”Until a disease hits a family, many people are unaware that the National Bone Marrow Registry is lacking in minority donors. “The registry needs minorities, especially Hispanics, and if we can get one person to sign up then we have added one more person on the list to help someone,” said LaGail Chism, recruiter specialist for the Bone Marrow Program.The registry is made up of about seven million people. Four million registrants are Caucasian with only about 460,000 registered Hispanics. “If a Caucasian person needs a bone marrow transplant they have an eighty percent chance of living but a Hispanic has an eighty percent chance of dying,” said Chism.Knowing that the statistics are stacked against Kerry, it makes Chism’s job even harder when she has to turn a potential donor away because of lack of identification. At the drive last week, a woman named Maria came to register but did not have any identification with her. She had no social security number, driver’s license or green card. Visibly upset and with tears streaming down her face, she told Hispanic News “they did not allow me to apply because I did not have papers. They told me it is the law. We had the intention but could not do it. We tried and it hurts not to be able to help.”“It is the requirements of the National Bone Marrow Donor Program,” explained Chism. “We have to have some identification in case they are a match for someone then we can locate them. That is how we locate them through social security or a driver’s license. It is heartbreaking and I wish we could come up with something that we can sign up willing donors. That is what we want, willing donors. It is hard watching them walk out and they may be a match for someone who needs it.”Chism is determined to investigate ways that someone like Maria may be able to register. Not only is the program a national program but it is also an international registry so there may be a way that individuals can register in their home countries. “I know there has to be some way we can work this out.”Unfortunately, a match has not been found for Magaña. They do have family in Honduras and there is the chance that one of them could be a match for her. “If they can get registered over there and if they are compatible with me, they will fly them over and have everything done. We may have to go looking for the other family members in Honduras if we can’t find a match here,” said Magaña.“It is terrible to know what will happen. The leukemia and cancer are so insidious they can hide in your system and then attack. It is a miracle that my daughter is here, knowing that she needs a transplant while other children are hospitalized waiting to die without a transplant. My child is not there right now and that is a miracle,” said Sabrera.People interested in more information or signing up for the registry can contact the National Marrow Donor Program at Heart of America Donor Center, 8700 State Line Road, Suite 340, Leawood, KS 66206 or call (913) 901-3100, (800) 366-6710.
Joe Arce and Debra Decoster
HISPANIC NEWS
