Father inspired to donate marrow by his dying son

November 27, 1994|By Donna E. Boller | Donna E. Boller,Sun Staff Writer

Darrell R. Robertson Jr. signed up to be a bone marrow donor while his son was in a nearby hospital waiting to learn whether the healthy marrow cells he received from a stranger would free his body of leukemia.

The odds were 1 in 20,000 that Sergeant Robertson, a state police officer, would be the last, best shot at life for a stranger. But when the letter came more than five years later, asking him to take sophisticated tests that would identify the most compatible marrow donor for a leukemia victim, he was sure he would be the one.

In January 1988, Darrell and Susan Robertson had taken their 11-year-old son, Darrell R. III -- "Robby" -- from their home near Union Bridge to Wisconsin Children's Hospital for a bone marrow transplant from an unrelated donor.

In a room on the same floor of the hospital, another boy with leukemia waited for a marrow transplant. No compatible donor could be found.

"Robby said, 'Dad, maybe you're a match,' " Sergeant Robertson recalled. The elder Robertson was dubious, given the statistical odds against two unrelated people sharing the same cell characteristics.

Robby persisted. "Then maybe you're a match for someone else," he said.

Sergeant Robertson wasn't a good match for his son's hospital friend. Doctors tried a transplant with the boy's own marrow, but it failed to defeat the leukemia. The youngster died.

A person's brothers and sisters are most likely to have inherited matching cell characteristics, which make it easier to transplant bone marrow without having the body recognize it as foreign and attack it.

But Robby's brother, Scott, hadn't inherited the same characteristics. His parents weren't good matches either, so doctors turned to an unrelated donor.

Robby died in September 1988, after a lung infection.

The letter that appeared in the Robertsons' mailbox in August 1993 said, ". . . you are one of a small number of donors who may match this patient." But even before he got to the part about further testing, Sergeant Robertson was sure he was the right donor.

"I just felt it was going to be me," he said. "I knew it was something Robby would be really happy about."

Sergeant Robertson went to the Johns Hopkins Hospital and gave the necessary 10 tubes of blood for testing.

On Sept. 28, five years to the day after Robby died, Lois G. Hoffer, coordinator of the unrelated marrow donor program at Hopkins, called Sergeant Robertson to say he was the best match.

Confidentiality policy

Because of the confidentiality policy of the National Marrow Donor Program, Ms. Hoffer could tell him only that the prospective recipient was a 27-year-old woman with chronic leukemia.

In a bone marrow transplant, the leukemia victim gets large doses of radiation, which kill all the bone marrow, cancerous and noncancerous. Then the donor's marrow cells are injected in the hope that they will begin producing healthy white blood cells in their new host.

Prospective donors are required to have physical exams to be sure they are healthy. A donor may emerge from the procedure with what Dr. Jones calls "a little discomfort" in the pelvic area, where doctors insert syringes to withdraw the marrow.

He said the major risk to the donor is general anesthesia, if the person chooses it. There is a 1-in-10,000 risk that physicians will be unable to awaken the individual. But marrow harvests are usually done with a spinal or epidural anesthetic, Dr. Jones said.

Despite the low risk, Sergeant Robertson said, "There's a brief moment when they hook you to the IV and you're walking to the operating room and you're thinking, 'Am I crazy?' "

Statistics on the success of bone marrow transplants from unrelated donors still are scarce. The National Marrow Donor Program did a study last year that showed success rates of about 30 percent to 40 percent among the first 500 of the 2,100 transplants done so far.

Jennifer Caliandro, media coordinator for the program, said the success rate varies by the disease and the recipient's age and physical condition at the time of the transplant.

The Robertson family was able to meet Robby's marrow donor, a marketing systems specialist with Miller Brewing Co. in Milwaukee.

Under today's rules, the Robertsons would not be allowed to learn the donor's name for a year after the transplant and then only with the consent of both donor and recipient.

The federal government passed confidentiality laws that Ms. Caliandro said protect both donor and recipient.

Correspondence between donors and recipients is allowed, but is screened by personnel of the national marrow donor program, who delete information that would identify the individual or geographic location.

Ms. Hoffer said recipients frequently send thank-you cards through the screened mail.

Donors are notified how recipients are doing several times during the first year after the transplant.

No thank-you card

Sergeant Robertson has been notified that his marrow recipient is doing well.

In the card he was allowed to send to the woman, Sergeant Robertson urged her to stay strong for her family.

He added, "If you crave cheeseburgers, blame it on me," and signed it, "your blood brother."

Sometimes, he said, it hurts that he hasn't received a reply.

When a woman thanked him for holding a door one day, he realized he had received more expression of gratitude from her than from the woman who got his bone marrow.

But when he thought about it, he decided the "thank-you" mattered less than the "super good feeling that you've helped someone."

He just wanted her to know what she owes to Robby.

For information about the marrow donor program, call th hemapharesis unit at Johns Hopkins, 955-6347 or the Red Cross, 764-7000, Ext. 4.

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