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US mom in China to find marrow donor for daughter
Question of the Day
LIUZHOU, CHINA (AP) - Sherrie Cramer breaks into stifled sobs as she nears the dirt-streaked former orphanage in China where her daughter lived as a severely malnourished infant.
Once again, Cramer is fighting to keep the child she adopted alive. But this time, it's a battle against leukemia, and the odds are not in her favor.
Without a bone marrow transplant, Katie, now 16, may die from the aggressive blood cancer. The family has just a month, maybe two, to find a donor.
The teenager has no known blood relatives and her best chance of a match will be someone from her Zhuang ethnic group, China's largest minority of 16 million. So Cramer, of Sacramento, Calif., made the heart-wrenching decision to leave her daughter and go to China in search of a donor in the city of Katie's birth.
"I needed to come and do whatever I could do to ask the people of China to help me," says the 56-year-old English teacher and mother of three, all adopted from China. "I can give her everything, I can give her love and clothes and an education, but I cannot give her genetic markers for a match."
Cramer's effort highlights the lengths to which some ethnic minorities must go to find lifesaving bone marrow transplants. The Asian American Donor Program says ethnic minorities overall have a 50 percent chance of finding a perfect match from the U.S. bone marrow donor registry of 8 million people, compared to an 80 percent chance for Caucasians.
In 2003, the Wisconsin mother of a 6-year-old adopted Chinese girl suffering from a rare blood disease also visited her daughter's birthplace in search of a marrow donor. She succeeded, and Kailee Wells survived. But it took two years to find the right candidate, and the Cramers have far less time.
A search of bone marrow donor registries in the U.S. and other countries came up with 41 potential matches for Katie. Not one panned out.
Katie has fought for survival before. When the Cramers went to China in 1995 to pick her up, the 14-month-old baby weighed a mere 14 pounds. She was so weak she couldn't sit up.
The first night, Katie cried every time Cramer tried to put her down to sleep. Cramer eventually slept with the baby lying on her stomach.
"She didn't want to lose that contact," Cramer says. "She knew I was someone who was going to keep her safe."
Four years ago, after Katie finished sixth grade, the normally active 12-year-old who enjoyed gymnastics and soccer suddenly turned lethargic. A mysterious bruise appeared on one leg. After a vacation with her best friend's family, the girl's mother said: "You need to take Katie to the doctor because something's not right."
The diagnosis of acute myelogenous leukemia hit like a blow to the stomach. There was a long silence. Then Cramer got up, walked into the hallway outside the doctor's office and pressed her face against the wall. That night, Cramer and her husband Michael clung to each other as they cried in bed.
AML is a rapidly progressing cancer more common in adults than children. It affects the blood and bone marrow _ the spongy core inside the hollow area of the bones. Katie had a 50-50 chance of survival.
After five months of chemotherapy, Katie's cancer went into remission. Despite a bout of congestive heart failure in 2007, she continued to excel in school, go out with friends and play sports. She was crowned second princess in this year's Miss Teen Asia Sacramento pageant.
Then in April, after nearly three and a half years of remission, her cancer returned.
"They say if you make it to three years you have a good chance of being cured," Cramer says. "We thought it was behind us, but it came back and now we have to try again to stop it."
Relapsed AML is rarely cured by chemotherapy alone, according to Dr. Kent Jolly, Katie's physician at Kaiser Permanente Medical Center in Roseville, Calif. After a relapse, the chances of being cured are lower than 50-50. The combination of chemotherapy and a bone marrow transplant provides the best hope.
But going into intensive chemotherapy left Katie's immune system dangerously weakened. The day before Cramer's departure for China, a CT scan showed an infection brewing in Katie's lungs.
Cramer arrived alone in Beijing around midnight on July 3, a Saturday, carrying a bag full of fliers and a heart full of worry for Katie.
Cramer held her first meeting later that day with China's Red Cross Society, which runs the country's bone marrow donor program.
China's donor registry has grown from just 50,000 people in 2003 to more than 1.1 million _ still a small fraction of the Chinese population of 1.3 billion. By the end of June, more than 1,700 Chinese had made donations, including 75 to overseas recipients. But supply still falls far short of demand, with nearly 1 million people needing transplants.
An official reminded Cramer that nine potential matches for Katie in China had already been found. But Cramer still wanted to launch a donor drive in the southern region of Guangxi, where Katie is from. She left the meeting unsure if the Red Cross would support her trip.
Her e-mail inbox was full of suggestions from friends back home. She found it overwhelming. Where should she start? Who should she talk to? What should she do? A paralyzing feeling of helplessness kept her awake past midnight.
She also worried whether Katie was coping with the lung infection. Turning to a fresh page in her yellow legal pad, she listed the hours of the day in China and their corresponding times in California. She drew little stars next to the best times to phone home: 10 a.m. in Beijing _ 7 p.m. in Sacramento _ got two stars.
A devout Christian, Cramer opened the Bible and read a line from Proverbs: "Trust in the Lord with all your heart, do not depend on your own understanding." Comforted, she fell asleep.
The next morning at 10 a.m., Cramer logged onto Skype and an alert came in within two seconds. A window opened to show Katie in a black T-shirt, sitting in her hospital bed in an isolation ward decorated with get-well cards. Her head was newly shaved because her hair had been falling out in clumps from the chemotherapy.
"Oh my baby!" Cramer says. "Did you get a shave?"
"Yeah, I feel so much better," Katie replies.
"I want to just reach through and touch it," Cramer says wistfully. Her fingers grazed the screen of her laptop. "I'm rubbing your hair, Katie."
A cough from Katie triggers a flurry of other questions: How is your cough? Are your lips dry? Are you sleeping OK? What are your counts?
Katie says her cough is getting better, her counts are still at zero and she just got a transfusion of platelets. But she's also on morphine to ease the pain in her back. Cramer looks worried.
Cramer, who describes herself as "just a mom," never thought she would return to China under such circumstances. Her Mandarin is limited to "ni hao" _ "hello" _ and her translator has backed out without giving a reason. She has five days left in China.
The Fourth of July came and went. Cramer barely noticed. Good news arrived on Monday, when the Red Cross agreed to send samples of four of the nine potential matches to California for further testing. The agency also said it would support Cramer's trip to Guangxi.
On Tuesday, Cramer arrived in the Guangxi capital of Nanning, where the Red Cross arranged for her to meet with local reporters. Cramer's inexperience with the media showed in her soft-spoken manner and shy shrugs. Her entourage consisted of a staffer from a U.S. group that helps orphans and two American teenagers fluent in Chinese. They weren't professional translators, but their efforts, combined with Cramer's sincerity and Katie's plight, moved many of the reporters.
"I don't have a lot of time with Katie. She doesn't have years to look. She doesn't have months to have a transplant," Cramer says. "It has to be soon. It's urgent."
The interviews were emotionally exhausting for Cramer, who repeatedly recounted Katie's adoption, her life in the U.S., and the cancer diagnosis. She barely slept.
On Wednesday night, Cramer received an unexpected call on Skype. It was Susan Wong, a friend, with bad news. Katie was transferred to intensive care because the pneumonia was putting stress on her heart.
Cramer dropped into her chair, sighed and fell silent. She rested her forehead on one hand and shut her eyes.
"I know you don't want to hear it, but the doctors are just being cautious, Sherrie," Wong says. "You know, God's gonna pull her through this. He didn't send you all the way over to China, OK, and make all these things happen, for her not to get better."
After the call, Cramer sighs. "That's just where she has to be right now and I can't do anything about it. Just pray."
With two days left in China, she could only hope her appeal was getting out.
In the industrial city of Liuzhou, where Katie once lived, the head of the local Red Cross office, Song Xianmin, organized meetings with reporters and visits to a blood donation bus and Katie's old orphanage.
"We are very touched that you would come from so far away to try to find a match for a child of China, whom you have treated as your own family," says Song, a thin, bespectacled man.
The representation of China's Zhuang minority in the marrow donor program has been lagging, he says, and he hopes Cramer's campaign will help address the shortage.
Many Chinese are unwilling to donate due to traditional beliefs that discourage the removal of body parts. And some fear pain during the procedure or damage to the donor's health.
On Thursday, Cramer saw the first results of her campaign. A 33-year-old ethnic Zhuang construction worker had seen her on the previous night's news and felt it was his duty to respond. A 19-year-old student who met Cramer on the blood donation bus signed up to be a donor.
Barely able to speak, Cramer made a tearful call to Katie to let her know people were responding. "Your story has touched many, many people here in Liuzhou and people are coming out ... to register," she says.
On Cramer's final day in Liuzhou, she visited the grounds of Katie's former orphanage, now a home for the elderly. It was an emotional reminder of how Katie spent the first year of her life.
Back at the hotel, she talks to Katie on Skype with more than a dozen reporters watching. Katie is sitting up in bed and feels better, she says. Song, the Red Cross official, tells her through a translator: "The people of your hometown all hope and wait for you to return to visit Liuzhou after you are better."
As Cramer packs her bags, she is tired but pleased.
"At the end _ and this will have an end, whether the way I want it to go or the way I don't want it to go _ I wanted to know that I did everything that I could have done," she says. "I don't want to have any regrets, to say, 'Why didn't I go?'"
Cramer has done dozens of interviews, and has made it into newspapers and onto local television. Around 40 people have called the Red Cross in Liuzhou to ask if they can help.
China's donor program will send blood samples of any potential matches to its U.S. counterpart for further testing. If a perfect match is found, the donor needs to pass a physical examination before a decision is made on a transplant.
"Now," Cramer says at the airport in Liuzhou, "We wait."
On the Net:
Katie Cramer Donor Drive, http://katiecramer.org/
Be The Match registry, http://BeTheMatch.org
China Marrow Donor Program, http://bit.ly/d986wU
United Foundation for Children's Health, http://www.unitedfoundation.org/
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