honoluluadvertiser.com

Sponsored by:

Comment, blog & share photos

Log in | Become a member
The Honolulu Advertiser
Posted on: Thursday, November 23, 2006

To save stranger's life, with aloha

By Will Hoover
Advertiser Staff Writer

Robin Johnson, left, a bone marrow donor, talks with Rosey Vera Cruz, donor management specialist at St Francis Hospital Center. On Monday, Johnson will undergo surgery to remove bone marrow.

GREGORY YAMAMOTO | The Honolulu Advertiser

spacer spacer

HOW TO HELP

People interested in being placed on the Hawaii Bone Marrow Donor Registry or who would like to make a donation or learn more can call 547-6154; toll free (877) 433-6667, or visit www.marrow.org.

spacer spacer

Robin Johnson plans to spend this Thanksgiving Day quietly at home, by herself, possibly reading.

"I just want to make sure I stay healthy," she said.

Johnson's real Thanksgiving Day will begin on Monday, when she goes into St. Francis Medical Center to undergo surgery to remove the equivalent of three soda cans full of bone marrow from her hips — a process that will leave her weak and feeling "like I fell really hard on an ice-skating rink."

Yet she is thankful at the prospect of undergoing the painful process because her bone marrow could save the life of someone she's never met thousands of miles away and whose name she may never know. It's a moment she's waited years for, though she's known there was a chance it might never happen.

Johnson signed up for the Hawaii Bone Marrow Donor Registry in 1990, the year it began, after a close friend was diagnosed with leukemia. Johnson's name was No. 14 on the state's registry list. From there her name was added to the national registry. She knew at the time there was virtually no chance her marrow would match her friend's. But she hoped to one day help another person in a similar predicament.

That moment came late this summer when Johnson got word that her bone marrow tissue-typing markers were not only a match with a cancer patient, but that she qualified to be part of a research project focusing on a new form of cancer treatment. Although the match wasn't perfect, she was told it was close enough. She was also told she is the patient's best hope.

Johnson signed up immediately.

Doing so has meant scheduling numerous doctor appointments, undergoing blood tests, taking a physical exam and even giving her own blood so she can have the necessary transfusion after her marrow is removed. She's not fazed by it.

"How often do you get the opportunity to maybe save somebody's life?" she said. "I've been waiting 16 years to make good on this commitment."

NO ANONYMITY

Ordinarily, donors and recipients have no knowledge of one another. Registry officials like to keep it that way, in part to protect the identity of the donor — who, among other things, could be pressured by the recipient's family and friends to donate again if the need arose.

But in this case that protocol was interrupted for a couple of reasons. First, Johnson doesn't want her identity protected since she believes her story might persuade others to join the list of 66,000 donors on the Hawai'i registry, and the more than 6 million people who are on the National Bone Morrow Registry.

Also, Johnson, a Honolulu charities consultant who's something of an amateur girl detective ("I'm the Nancy Drew of Charities," she said, laughing), has been able to ferret out a few minor details about the recipient: He is a young man who lives on the Mainland and weighs more than 300 pounds. Although that's not much information, it's enough to tip her off to something else.

At a little over 120 pounds — even after pigging out on Haagen-Dazs ice cream for weeks in order to "fatten up" — Johnson realizes she might be needed to return to the hospital to give additional marrow because of the large weight difference between donor and recipient.

She's already told doctors she wouldn't hesitate to return.

Matching donors such as Johnson provide a unique gift to patients, experts say.

"It is like winning the lottery," said Randal Wada, medical director for the Hawai'i Bone Marrow Donor Registry. "Even as a doctor I can't really say I've ever saved anybody's life that couldn't have been saved by somebody else in my position. They say doctors save people's lives. So do firefighters and police officers. Yeah, that's true. But it could have been another doctor, another firefighter or another police officer. But for somebody like her, she truly is that one-in-a-million person. It's not like anybody else could have stepped into her shoes to do this. She's it."

At any given time, there are about 3,000 patients nationally waiting for a bone marrow transplant. The national registry coordinates about 220 marrow or stem cell collections a month. In Hawai'i, the number of waiting patients varies, but the Hawai'i registry coordinates around one to three collections a month.

NEED IS GREAT

Roy Yonashiro, donor recruitment coordinator for the Hawai'i registry, said the most challenging aspect of his job is making people understand that there are so many patients out there who need help, and so few matchups.

"A lot of people signed up to help this girl here," said Yonashiro, pointing to a wall poster of 3-year-old Alana Dung, a leukemia patient whose story triggered an outpouring of community support in 1996. "But a lot of the people we contacted only signed up for her. Otherwise, they wanted their names taken off the list. They didn't get the message."

The message is that many names are needed on the registry because the odds are so long that a match will be made. More than 30,000 people signed up in response to the widely publicized story of Alana before an anonymous match-up donor was found in Taiwan. But following what initially seemed a success story in the summer of 1996, Alana had a relapse and died on Oct. 14, 1997.

While she became widely known, the majority of patients choose to remain anonymous.

Even Wada has no idea who the recipient of Johnson's marrow is — only that the person has probably gone through one bout of cancer already, and that he is one of a small number of such cancer patients involved in a research study to determine the effects of donated bone marrow on people with solid tumors.

Traditionally, stem cells from bone marrow have not been used to treat solid tumors. But recent studies suggest that some solid-tumor patients might benefit from a new type of treatment involving bone marrow.

EXPERIMENT OPTION

Johnson's recipient had the option of going through another round of intense chemotherapy, which hasn't had a strong track record in treating secondary solid tumors, according to Wada. Otherwise, he could try this more experimental type of bone marrow stem cell transplant in combination with a less intense form of chemotherapy.

In the end, the trial could be beneficial to the patient, to future patients and to the donor, said Wada. If it works, the patient would live longer. Future patients would benefit from the knowledge gained from the research. And the donor would benefit from the knowledge that she or he might be saving a life as well as those of future patients.

Johnson is aware that she is not a perfect match with her recipient. But with five of six markers matching, she's close enough, doctors tell her.

"If there's any regret, it's that I'm not a perfect match, and that there's perhaps somebody out there who's closer that's not on the registry, or they're on the registry and they don't want to do it," said Johnson. "And that breaks my heart.

She would be thrilled if a perfect match suddenly appeared. Since that's not likely, she's thankful to be able to go on Monday.

Johnson knows that for many reasons, some folks aren't able to donate bone marrow. But she says everyone who wants to help can do something: If they're scared of needles, open up the checkbook and write out a monetary donation.

Reach Will Hoover at whoover@honoluluadvertiser.com.