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One Woman's Plight Shows Minority Woes

Tai Minfei started a new life 11 years ago when she left Taiwan to marry her husband in the First Ithaca Chinese Christian Church. This Sunday, she may get a second chance at life at the very same church, which is hosting what could be a life-saving bone marrow drive for her.

Tai, who just celebrated her 40th birthday last weekend and is the mother of six-year-old twin girls, is in dire need of a bone marrow transplant. Last March, she was diagnosed with acute myeloid leukemia, a type of cancer in which healthy blood cells are replaced by abnormal cells grown from the bone marrow.

“I was crying,” Tai said as her daughter sat quietly on her lap. “At first I didn’t even know what ‘leukemia’ is in English. I was so shocked. I didn’t know why I got this. I don’t exercise a lot, but I have a normal life, busy with my twin girls. I usually don’t get sick.”

Since the diagnosis in March, Tai has endured seven chemotherapy sessions — as well as the intense headache and nausea that accompanies the heavy medication — at the Strong Memorial Hospital in Rochester, a two-hour drive from Ithaca. After each round of chemotherapy, Tai, her hair gone and nails black, has to rest at home for three to four weeks.

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In need of a donor: Tai Minfei discusses her battle with leukemia alongisde her husband, Hu Kaisheng on Tuesday.

In August, Tai’s cancer went into remission — all the leukemia cells were eradicated from her body. But the good news did not last long. A biopsy toward the end of the year revealed that Tai’s battle with leukemia was not over. The illness has relapsed, leaving Tai drained of energy.

“After three hours [of normal activity] I feel tired. I take naps whenever I need. It’s very important for me to get my energy back, “Tai said peacefully, her eyes steady with determination.

Two bone marrow drives — one at the church on Sunday and one at Cornell on Monday — will be held in hopes of increasing Tai’s chances of finding a match.

“It’s not just for me, but for other people too,” Tai said.

There is an “urgent need” for bone marrow donors with ethnic backgrounds across the nation, according to the National Bone Marrow Program, a registry of 7 million potential donors. The perfect bone marrow match often occurs between two people of the same ethnicity because they share similar or identical tissue types.

“When presented with a patient from a minority group — whether it be Native Americans, African Americans, Asians or Latinos — we have much greater difficulty in finding a match,” said Dr. Jane Liesveld, clinical director of the National Bone Marrow Program at Strong Medical Center in Rochester, where Tai is being treated. In 2008, the center performed 126 blood and bone marrow transplants. As one of the largest centers on East Coast, it also treats patients from many parts of New York State and some from northern Pennsylvania.

More than 6,000 patients are searching for the perfect bone marrow match every year. Out of the 7 million potential donors in the program, only about 30 percent are minorities, according to the Cammy Lee Leukemia Foundation, which will assist the upcoming bone marrow drive in Ithaca. Asians, in particular, only make up about 8 percent of the registry.

“Getting a bone marrow transplant is basically a last resort,” Lee said.

Siblings usually offer the best chances of finding a match, Unfortunately, Tai’s two brothers are perfect matches between themselves, but not with her.

While waiting for a suitable bone marrow match, some of Tai’s stem cells were extracted from her body, frozen and stored in the hospital last week. If necessary, they would be transplanted back to Tai’s body in the future.

“This will give us more time,” said Tai’s husband, Hu Kaisheng, who works night shifts at the Tompkins Country Trust Company. He emphasized that only a bone marrow transplant would give Tai the greatest chance of recovery.

Anyone who is between the age of 18 and 60 and meets the medical guidelines can sign up as a potential bone marrow donor. During the drive, donors will have to fill out a form and brush a swab against the insides of their cheeks in order to collect cell samples. No blood test is required and the whole process takes only about 40 seconds, according to a statement released by the church.

Due to the shortage of minority donors, the U.S. has provided a grant so that minorities are exempted from the $52 registration fee usually required for registration, according to Cammy Lee, a survivor of leukemia and founder of the Cammy Lee Leukemia Foundation.

Throughout her career as a recruitment manager for her foundation, Lee has come across many misconceptions about bone marrow transplant. One common misconception, she said, is that a donation entails a painful surgery, in which bone marrow is extracted from the spine. But in fact the process is painless: the donor’s bone marrow is extracted from the back of the pelvic bone with a needle while she is under anesthesia. The donor may experience only a little discomfort during the first week, according to Lee, but in exchange of this inconvenience is a life saved.

“A few days of discomfort can mean a lifetime to people suffering from blood diseases and [to] their family and friends,” said Lee, who endured six years of chemotherapy starting when she was 13 years old. She survived leukemia after receiving a bone marrow transplant in 1992 at the age of 22.

When Lee was searching for a bone marrow transplant, there were about 1.5 million donors, of whom only about 2 percent were Asians.

Lack of education and fear are some of the biggest obstacles in recruiting more donors. The belief held by many Chinese people, from older generations in particular, that the body should be buried in full also deters potential donors, even though bone marrow can be generated by the body.

“My donor’s in-laws were like, ‘Don't do it! You will die!’” Lee said.

At Cornell, during Spring Break of her senior year, Natasha Hodas ‘07 was diagnosed with myelodysplastic syndrome, a form of cancer that results in a shortage of blood platelets, red and white blood cells. Upon diagnosis, she was rushed to the emergency room and was unable to return to Cornell. Despite great difficulty, with the support of her professors Hodas was able to continue her studies online and graduated on time with the Dean’s Award for Academic Excellence.

Shortly after graduation, Hodas received a bone marrow transplant in June. Words are unable to describe the moment when she was told that a marrow match was found, she said.

“I can’t even tell you the feeling. All this time in the hospital, waiting, and waiting, and waiting ... It was a huge relief,” Hodas said. “There is no way I could have lived without [the transplant]. The person who gave me his bone marrow is a complete stranger. He is a donor from the registry. I don't even know his name.”

Hodas, who is Jewish and of Russian descent, suspected that she benefited from a large bone marrow drive for a young girl of her ethnicity several years before she needed a marrow. While she described herself as “lucky,” she was also aware of the dearth of minority marrow donors.

“My doctor told me he had a really hard time finding matches of minority groups,” Hodas said.

Hodas is still on medication. Unlike organ transplants, in which the body may reject the external organ, the new bone marrow may attack the recipient’s body, she said. The alumna is now pursuing a graduate degree in Rutgers University.

In Ithaca, while Tai’s physical strength may be wearing away during the wait for a match, her family and religion give her the mental strength to carry on.

“Everybody in church is praying for us, we have great support. Some people even fast and pray. I believe God will pray for us too,” “God want me to learn to face anything.”

Apart from prayers, Tai's friends also offer to help the family in various ways — from cooking to driving — especially when Tai had to travel to Rochester for treatment.

“We are one family here,” said Wan Ruolian, discipleship minister of the church.

A bone marrow drive will be held this Sunday at the First Ithaca Chinese Christian Church from 1 p.m. to 4 p.m. On Monday, two bone marrow drives will be held at Cornell by Lambda Phi Epsilon from 11 a.m. to 2 p.m. in Willard Straight Hall, and from 5 p.m. to 8 p.m. in Robert Purcell Community Center and in Appel Commons.

“We do know a lot of people waiting for matched donors. You may save someone’s life if you're willing to be a donor. If you're qualified, then we hope you can come,” Tai said.

- From Cornell Sun
http://cornellsun.com/section/news/content/2009/02/19/one-woman%E2%80%99s-plight-shows-minority-woes

 
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