Halfway through her weekly checkup at Oakland Children's Hospital, Eman Alqattan turned to her doctor and spoke at length in rapid Arabic, her tone assertive, even a little demanding.

"She wants to know," said an interpreter, Rima Rhodes, "why her levels aren't going down."

Specifically, 8-year-old Eman wondered why she still had to take high doses of steroids to treat side effects of a bone marrow transplant she underwent two months ago, in hopes of curing her sickle-cell disease. Eman listened patiently, nodding once, as the doctor explained that her symptoms were improving, but not quite gone.

"This girl, she's 8 going on 60," Rhodes said with a smile, after making sure Eman was satisfied with the doctor's answer.

And no wonder - in her short years, Eman has endured decades' worth of illness and invasive treatments. A native of Kuwait, she came to Oakland in September for a bone marrow transplant, a risky, last-ditch procedure to cure her.

"She inherited a particularly bad form of sickle cell," said Dr. Mark Walters, director of the blood and marrow transplantation program at Oakland Children's Hospital. "She had bad problems with frequent pain and she wasn't responding well to supportive care."

Sickle-cell disease is an inherited blood disorder that causes the red blood cells to form in a "sickle" shape, which affects the cells' ability to circulate throughout the body. The disease can cause severe pain, stroke and a host of other complications, and it can be deadly.

The disease is rare, afflicting about 90,000 people in the United States. Fewer than 1 percent of Americans carry the gene that can cause it, but it's more prevalent among black people and in people from the Middle East.

Just being a carrier of the gene doesn't make someone sick, and in fact, Eman's parents had no idea they had the gene until Eman - who is the youngest of five children - was diagnosed six months after she was born. Her parents took her to the hospital when her skin had taken on a notable yellowish tint, and she was obviously jaundiced.

"The doctors did their tests and said it was sickle cell. We had no idea," said Eman's mother, Amal Al-Mustafa.

Initially, Al-Mustafa said the doctors told them that Eman would improve as she got older, which can indeed happen with some children. But Eman got worse.

No cure, but progress

The standard treatment for sickle cell involves alleviating symptoms. Only one drug, Hydroxyurea, has been approved specifically to treat sickle cell, and it's not curative. Most children with the disease survive into adulthood now, which is a vast improvement over 20 or 30 years ago, but they're still likely to die younger than their peers, Walters said.

"The problem is that the young adults don't do very well. The survival median is still only 42 to 48 years, so their lives are 30 years shorter, and they have a lot of medical problems," Walters said.

For now, the only potential cure is a bone marrow transplant. That involves killing all of a patient's native blood-forming cells, which are located in the bone marrow, and replacing them with stem cells pulled from the bone marrow of a donor.

The treatment is successful roughly 90 percent of the time, but it can be difficult to find a donor who matches the recipient. If and when one is found, patients must undergo chemotherapy or radiation to kill off all of their bone marrow and weaken their immune system to prevent rejection of the donor's marrow. Aside from being very unpleasant, the treatment can result in fatal complications.

Turning to stem cells

Bone marrow transplants for decades were considered so risky that they were only offered to the most extreme cases, in children whose sickle cell was so severe that they were constantly suffering or likely to die very young from it.

Increasingly, Walters said, doctors are turning to stem cell transplants for less dire cases. Oakland Children's Hospital does about a dozen bone marrow transplants in sickle-cell patients a year. Scientists also are studying transplants among unmatched patients and donors, which would allow more people to undergo the procedure.

One of Eman's sisters donated the bone marrow for her transplant, which was done in October. The procedure, which cost about $500,000, was paid for by the Kuwaiti government, which covers health care for patients who must travel overseas for treatment.

So far, Eman has responded well to the transplant. Her blood levels are normal for the first time her parents can remember, and the only significant problem has been a rash - from a condition called graft-versus-host disease, in which the implanted cells attack the host body. In Eman's case, the rash has been fairly minor and is responding to steroid treatment.

But it's still far too early to call Eman's case a success, Walters said, and her doctors will wait at least a year post-transplant to call her cured.

Outside the hospital

In the meantime, Eman and her parents check in with the hospital weekly. Their days are spent mostly lounging around the apartment they've rented in Emeryville, or video chatting with Eman's older brothers and sisters, who are all back in Kuwait.

And they shop. A lot. Aside from Halloween, when Eman dressed up in two different costumes and trick-or-treated for candy in the hospital corridors, her favorite American "holiday" may be Black Friday.

"She loves watches. She loves bracelets. She has so many necklaces already," said Eman's father, Abdullah Alqattan, as Eman showed off the half-dozen bracelets - some with charms, some brightly colored plastic - she'd purchased in the United States.

Her favorite store, Eman said, is Claire's - the mall staple that sells every kind of jewelry and trinket a little girl could wish for. At the hospital, she's well known among the doctors and nurses for her style.

Even on her worst days, Eman insisted on wearing a headband or hat to match her pajamas, and on one recent hospital visit she was dressed head to toe in soft purples.

The three of them will stay in the United States until at least next fall. Eman said she's looking forward to seeing her four siblings again, and especially dressing up with her older sisters. Her mother said she misses all of her family and just wants to be home again.

But traveling so far and enduring the at-times miserable treatments has already been worth it, Abdullah Alqattan said. He pulled out a sheet of paper with Eman's latest lab results, and pointed at a number.

"This," he said, pointing again, his eyes wide and still disbelieving as he looked at the results, which showed a little girl with normal, healthy blood tests. "This is why we came. This is why we are here."
