Devastating Decision : Leukemia Victim Told Marrow Donor Changed Mind

A potential donor whose bone marrow matches that of a Tarzana attorney suffering from a deadly form of leukemia has decided against undergoing a transplant procedure that could have save the attorney’s life.

Marc Smith, 36, learned Tuesday that the woman whose bone marrow is a perfect match to his has decided not to undergo the harvesting procedure for the transplant, which was his best chance for survival.

Because of the strict confidentiality involved, neither Smith nor his doctors know the identity of the woman, or why she elected not to donate.

“We are devastated,” Smith said in a phone interview from the sterilized isolation room at the Fred Hutchinson Cancer Center in Seattle, where he has been awaiting the transplant for more than 30 days. “This is a worse feeling than when I was originally diagnosed with cancer.”

The chance of finding two people with compatible marrow is one 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.

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 procedure, Smith learned that doctors had found a woman whose bone marrow was compatible. The woman had volunteered to be tested as a potential donor.

Learning that the woman has decided not to become a donor is “the most frustrating thing that has ever happened to me,” Smith said.

“It’s like getting a gift and you think it’s the greatest thing that ever happened to you, and then (you are) told that you can’t really have it,” he said.

Smith said hospital officials have indicated that the woman’s relatives persuaded her not to donate the marrow.

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 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 you 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, 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 during the procedure.

Potential donors are briefed about possible complications from infection or anesthesia. Most people still go ahead with the procedure, but Olesen said it is not unprecedented for someone to decline.

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 afterward.

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.

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 chance of long-term survival without a recurrence of the cancer has been cut in half.

Despite the reduced odds, Smith said he 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.”