A potential donor whose bone marrow matches that of a Tarzana attorney suffering from leukemia has decided against undergoing a transplant procedure that could save the victim's life.
Marc Smith, 36, learned Tuesday that the woman whose bone marrow is a perfect match for him has decided not to undergo the harvesting procedure for the transplant, which was his best chance for survival.
"We are devastated," Smith said in a phone interview from the sterile, enclosed room at the Fred Hutchinson Cancer Center in Seattle, where he has been for more than 30 days awaiting the transplant. "This is a worse feeling than when I was originally diagnosed with cancer."
The chance of finding two people with compatible marrow is only 1 in 15,000, but the odds did not stop Smith's family from launching a cross-country search last November to find a potential donor for him.
By the end of January, no donor had been found. With doctors telling him he had less than a month to live, Smith decided to undergo a riskier procedure, known as an autologous transplant, using his own marrow.
But late last month, hours before he was scheduled to begin preparatory chemotherapy for the autologous transplant, Smith learned that doctors had found a woman whose bone marrow was compatible to his. The woman had volunteered to be tested as a potential bone marrow donor.
Learning that the woman has decided not to become a donor is, Smith said, "the most frustrating thing that has ever happened to me."
"It's like getting a gift and you think it's the greatest thing that ever happened to you, and then told that you can't really have it," he said.
Because of the strict confidentiality involved, neither Smith nor his doctors know the identity of the match, or why she elected not to become a donor.
Smith said hospital officials have indicated that the woman's relatives opposed her plan to donate the marrow, and persuaded her not to do it.
He said he cannot contact her to try to convey how much the donation would mean to his wife, who is living in a Seattle apartment to be near her husband, and to their three young sons, who are staying in the family's Tarzana home with Smith's mother.
"You wonder why when somebody has an opportunity to save somebody's life at a minimal effect to them that they wouldn't do it," he said. "I assume she has kids, and we are talking here about a human with three kids and a wife. Would she just let the patient lie there, deteriorate and die? It's unbelievable."
But Laurie Olesen, of the National Marrow Donor program, said potential donors may be deterred by fear of physical harm, and by the concern of spouses and children.
During the harvesting procedure, a long needle is inserted into the hip to extract a small amount of marrow, which can be regenerated by the body in a week to 10 days. The donor is under a general anesthetic.
Potential donors are briefed about possible complications from infection or anesthesia so they can make an informed decision about whether to donate.
Dr. Robert Decker, director of Cedar-Sinai's fledgling bone marrow transplant program, said the risks involved are minimal, though the donor may be in pain for a few days afterwards.
He estimated that more than 10,000 bone marrow transplants have been done in the United States, and he said no serious harm has ever befallen a donor.
"You have one exposure to general anesthesia, and 45 minutes later you wake up and the next day you go home with a slightly sore bottom," Decker said. "It has no long-term ill effects on you."
Lori Hubbard, search coordinator of the Hutchinson Center's Unrelated Donor Program, which identifies potential donors for all kinds of transplants, said the woman may have had personal reasons for not going through with the procedure.
"There could be any number of things going on in her life right now. It can potentially change their lives, and they need to feel comfortable about doing this," Hubbard said. "We can't guess as to what she is thinking or what is going on in her mind."
On Tuesday, Smith was scheduled to begin intensive chemotherapy treatment as preparation for the autologous transplant.
But Smith's physician in Seattle, Dr. John Neumanitis, said his patient's chance of long-term survival without recurrence of the cancer has been cut in half.
Despite the reduced odds, Smith refuses to give up.
"I still hope that I will be cured," he said. "If we are going to go down the tubes, at least we are going to go down fighting."