Blood sisters

Arnold girl with a lethal cell disorder is thriving with marrow given her by German student

March 01, 2009|By Kellie Woodhouse | Kellie Woodhouse,

In a pale yellow room in the Schlesinger home in Arnold, sunlight pours in through two long windows. Avery, 3, is running her neon-colored toy around the edge of the coffee table, making engine noises. Her pink-framed glasses are slipping down her nose, her short brown hair a mess of tangles.

She seems unaware that everyone in the room is talking about her. Her father is sitting in an armchair, her mother sinking into an overstuffed couch next to a 23-year-old woman from Germany she met two days ago. In another room, Avery's brother and sister are watching a cartoon, and its sounds flitter in and out of the conversation.

It's a normal setting, but the conversation isn't average coffee-table talk.

"We both turned to each other, and we said, 'At least it's not cancer,' " says Eric Schlesinger, 34, Avery's father, describing the moment nearly three years ago that he and his wife, Erin, learned their 10-week-old daughter has hemophagocytic lymphohistiocytosis, or HLH. "We had no idea what we were about to walk into."

HLH is a disease that causes infection-fighting cells to destroy the host's immune system. Untreated, it would obliterate Avery's immune system, cause irreversible brain damage, and eventually kill her.

Doctors at Sinai Hospital of Baltimore started Avery on chemotherapy and steroids, but they said that would stave off the disease for only a short time.

A bone marrow transplant was Avery's only option.

A search for a donor took the Schlesingers six time zones away to Germany.

Jana Walter, at the time a 21-year-old university student and aspiring teacher, received a letter from the International Bone Marrow Donor Registry, of which she was a member, asking her to undergo testing that would determine her marrow's compatibility with Avery's.

After a hospital visit, she was told her marrow could help save an American girl's life and was asked to donate it. The procedure required three days of hospitalization, two marrow extractions, and a week of rest. "I never thought about not doing it," Jana says.

'Do Something!'

July 21, 2006, six months after Avery's birth and the day of the bone-marrow transplant, started off simply. Doctors at Children's National Medical Center in Washington were confident things would go smoothly.

Eric brought Erin a cup of coffee, trying to soothe her nerves, and they sat in the room with Avery as she underwent the long process.

Ninety minutes into the procedure, Avery broke into "this blood-curdling cry that I can still hear," Eric says.

Avery's lungs began to fill with fluid, and she was in danger."It's one of those moments for me as a mother. ... I was holding her and she's crying and you could tell that she was distressed, and it felt like there were people moving in slow motion around me," Erin recounts. "I remember yelling, 'Do something! You need to do something!' "

Avery's body couldn't absorb the marrow, which has the consistency of blood, fast enough. Liquid was suffocating her lungs.

"Everything's crashing around us and the attending doctor is looking at his feet and saying, 'I can't do anything else,' " Eric recalls, his eyes fixed on the carpet. "I can remember making phone calls to my family saying I think this is going to be it."

"The doctors were able to stabilize her quickly before she stopped breathing," Eric posted on the family's online diary that evening. "Currently she is on a breathing tube to help her breathe and is sedated. ... Your prayers are needed more than ever now."

That night, doctors decided to continue with Avery's transplant, despite her weakened lungs.

"Avery is a fighter. She wouldn't have gotten this far if she wasn't," the diary reads.

A turning point

Two years later, Jana sat in her apartment watching a video. In the footage, Avery was outside; she was running toward the camera, laughing wildly with her hands outstretched.

Jana's heart sank, she says.

Up to this point, she and the Schlesingers had been corresponding anonymously, unable to share their identities because of Germany's donor regulations.

Once the two-year period had elapsed, their communication progressed with e-mail, then phone calls.

"It was familiar from the beginning; we have the same sense of humor," says Jana, who paced in her room awaiting their first phone call. "I heard [Erin's] voice, and we had to laugh a lot and just talk."

She wanted to know more after that call, but was nervous about visiting the family.

Jana describes the video as a turning point.

"I had to cry," Jana remembers, feeling pulled toward Avery during the video. "I saw that this is a happy, funny little girl, and I was so happy and all of the emotion came out and I had to cry. It was a wonderful moment for me."

In a few months, she would travel to the United States and meet the Schlesingers and little Avery.

A reunion

The holidays had just passed. Dulles International Airport was crowded. The Schlesinger children, Ryan, 8, Brynn, 5, and Avery, were hungry and grumpy. They had been waiting more than three hours.

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