Story Photos
 Photo by Bill Wagner Victoria Roberts, 7, strikes hew 'own special pose' as she returns to her home in St. Helens, Ore. Her bone marrow transplant was canceled after a battery of tests showed no sign of aplastic anemia. |
Suffering from aplastic anemia, Oregon girl's bone marrow returns to normal -- on its own
Friday, August 11, 2006 12:14 AM PDT
By Cathy Zimmerman
Printable version
E-mail this articleVictoria Roberts, the Oregon girl who was scheduled for a bone marrow transplant after a heroic fundraising effort by her parents and local communities, has had a stunning reversal of her rare blood disease.
Doctors at Fred Hutchinson Cancer Center in Seattle canceled the transplant that had been scheduled for Aug. 3 after a battery of tests showed no sign of the disease, aplastic anemia, in the girl's bone marrow.
"We don't know why she seems to be getting better," said Dr. Colleen Delaney, a pediatric oncologist on the team of doctors treating Victoria in Seattle.
Delaney, a Harvard graduate who works in both the clinical and research sides of childhood cancers, called the sudden turnaround "very unusual."
Since 1969, more than 2,000 bone marrow transplants have been done at Fred Hutchinson, with about 230 of those involving children, Delaney said.
"We did send someone else home," the doctor recalled, but in that instance, the child responded to a treatment for autoimmune diseases. When they tried that on Victoria, Delaney said, it failed. There were no options left but the transplant.
"Nobody saw this coming," said Jacqueline Roberts of St. Helens, Victoria's mother. "Her bone marrow is perfectly normal. ... It's a miracle."
The 7-year-old's white blood count still is low, and Delaney said the child is not out of the woods. But the oncologist said there is a possibility that Victoria is recovering from the potentially fatal disease.
Victoria was diagnosed in January 2005 after she broke out in an odd rash.
Aplastic anemia causes the body to destroy its own bone marrow, the substance that produces white and red blood cells. People who get the disease don't have enough white blood cells to fight off germs, and they can die if they don't get a transplant of healthy marrow.
The girl had more than 40 transfusions and numerous emergency trips to the hospital.
In January of 2006, tests showed Victoria's bone marrow at a precarious 30 to 50 percent, Delaney said this week by phone. The child needed the transplant.
Jacqueline and her husband, Chuck, had medical coverage that paid about half of the cost of the procedure. In a series of spirited projects, they raised the rest, depositing the funds with the Children's Organ Transplant Association, a national nonprofit group that counsels families and helps ensure safe fundraising.
The Robertses cleared another hurdle in July, when a field of donors from around the world was narrowed to 10, then only one: a 59-year-old man who proved a good-enough match. The age cut-off point for donors is 60.
The Robertses clung to the transplant procedure yet dreaded it. Before the new blood cells could be infused, Victoria would undergo chemotherapy treatments to kill off her own blood cells. She'd need a blizzard of tests, have two teeth pulled, lose her appetite. Her cascade of light brown hair would fall out.
Chuck Roberts told his wife, "They'll have to sedate us."
"Victoria, of course, was fine," Jacqueline said.
They put their trust in Delaney. "Most doctors are detached," Jacqueline said. "But she told me 'I have to be in all the way.' When I asked her wasn't there anything else we could do, she said, 'There's nothing else.'
"And then she said, 'I would do this for my daughter.' Well, she had me right there."
Days before the treatment, the doctor called the Robertses into an office.
"She said, 'You better sit down,' " Jacqueline said. "Of course, we thought the worst, that the donor had backed out."
Instead, they heard a blissful word: Their child's bone marrow was normal.
A relapse is possible
"We're happy, but we're guarded," Jacqueline said.
According to Delaney, Victoria could experience a recurrence of the anemia. The Roberts will continue to protect the child from situations that might expose her to accidents or illness, as well as schedule regular check-ups of her blood counts.
The money they raised will be kept by COTA for one year, Jacqueline said. "After that, they disperse it to children who need it. We might be able to help decide who gets it."
Jacqueline still worries about letting the donor get away. When he turns 60, he is no longer eligible to donate.
"He's pushing the edge as it is," she said. "I don't want to lose him. .. The doctors said, 'People who are called to donate stay with it. ... Maybe there'll be a perfect match if she needs it."
There is no way of telling how many in a given pool of international donors might have the right markers in 10 specific genetic categories. For now, it's moot. Victoria is producing her own blood cells.
"We ask you to send up some thankful prayers to our Lord," Jacqueline said. "And keep praying for these counts to come up."
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