Wed, Dec 03 2008

Published: April 08, 2007 11:56 am    PrintThis  

Live and help live: When life-threatening illness strikes, it takes a unique match to give a person a second chance at life

By Julie Kirkwood , Staff Writer
Eagle-Tribune

Until recently, a bone marrow drive for a sick person in New England was considered a success if it drew 150 people.

In the last few months, though, a series of high-profile patients have brought out unprecedented numbers of potential donors. Experts say the turnout is indicative of a trend driven by a number of factors, ranging from easier screening methods to energetic, far-reaching recruitment efforts on the part of families in need of help.

"We've definitely seen an upsurge lately in people doing this," said Elise Collins, donor center manager for the marrow program at Dana Farber Cancer Institute in Boston.

On one day alone, March 3, three local families held bone marrow drives. Two were in the same town.

In Derry that day, a drive for a 32-year-old mother who has leukemia drew 1,016 people to Calvary Bible Church to join the registry. It was one of the largest of the drives run by Dana Farber in recent memory, Collins said.

A Belmont family also held a bone marrow drive that day at Derry's Parkland Medical Center for their baby, Giovanni Guglielmo, who has a rare disease called NEMO. The turnout was modest, but in all, media images of the 8-month-old boy's sad eyes have drawn 4,605 people to join the bone marrow registry at 43 drives since Jan. 15, said Giovani's father, Michael.

Meanwhile in Haverhill on March 3, friends of Gail Twining, a 51-year-old mom, were registering potential donors hoping to find a match that would treat her leukemia.

Doctors have since found matches for all three patients, though none came from one of these drives. Baby Giovanni had his transplant a couple weeks ago; Twining was scheduled for her transplant this past Friday; and Buckley will have hers in early May.

Collins said she's not sure why there has been a surge in potential donors joining the registry, but the trend cannot be denied. It's probably a variety of factors, she said, including an increased push for recruitment on the part of registries, a simpler cheek swab screening that recently replaced blood samples, and the sheer charisma of patients and their families.

"For a long time it was mostly 30 to 150 people (at a typical bone marrow drive), which is still wonderful," Collins said. "But when you see these huge outpourings of support, it's pretty incredible."



Even after a match for their family member was found, both the Buckley and Guglielmo families are continuing their efforts to get people registered as potential bone marrow donors.

"We want to fill the registry for all the kids who are dying as they are waiting for a bone marrow donor," said Michael Guglielmo.

"There's not enough social awareness," he added. "We have such a huge movement for Giovanni, we feel it would be completely irresponsible to walk away."

Giovanni caught an infection last week, which is life-threatening so soon after a transplant. The boy's mother, Christina Poulicakos, and the father are constantly at the baby's bedside.

Still, Michael Guglielmo keeps in communication with the media from his cell phone and computer at Boston Children's Hospital, pushing for more people to register.

There's a slim chance this effort could pay off for the family down the road if Giovanni ever needs another donation, Michael Guglielmo said.

But really, he added, the drives are for the good of the entire community, rather than just one person.

Power in numbers

None of the three local patients who recently found donors did so through a bone marrow drive in his or her name. In fact, some of the donors were from as far away as Europe.

That is usually the case, doctors say.

Eighteen-year-old Jason Durkin of York, Maine, needed a bone marrow transplant to treat a rare blood disorder. He found his match in Europe, and had his transplant at Boston Children's Hospital a week ago.

His school held a drive that recruited more than 500 potential donors, and his aunt, Elizabeth Durkin of Londonderry, held two smaller drives locally in February. No donor was a match.

Diamond Tincher, 18, of Haverhill also had bone marrow drives in her name two years ago when she needed a transplant to treat leukemia. She found a match and did so well after the transplant that she graduated from Haverhill High School last spring.

But again, the donor was not found locally. Rather, he was a 26-year-old Florida man.

"I 'd love to meet him," Tincher said. "I'd just give him a big hug and tell him he saved my life. He gave me that second chance."

Jim Archacki of Haverhill, who was diagnosed with cancer at age 39, was an exception. He received a bone marrow transplant from his twin brother, John. That was more than 20 years ago, but the brothers still are involved in the effort to get more people on the registry.



John actually got himself tested recently and entered the registry.

"I encourage everyone to attend a bone marrow drive and get registered because it's a very, very simple procedure and it doesn't take very long," Jim Archacki said. "If everyone attended one, then the bone marrow banks would be much more powerful than they are."

A world of difference

Anybody who attends a bone marrow drive must agree to donate to anybody who needs a transplant, not just to the person in whose name the drive is held.

Even the people organizing it often are thinking more about the common good than saving one person.

"We knew from the beginning that the chances that Leigh would find a match from that particular drive were very low," said Ken Mullins, a close friend of Leigh Buckley who helped organize the event at Calvary Bible Church. "It was more to support her."

That's what's so amazing about the international registry of potential donors, said Collins, of Dana-Farber.

"Without someone doing a drive here, someone in California won't have a donor. And without doing a drive there, someone in Australia won't have a donor," she said. "It's really worldwide cooperation."

Buckley is undergoing intense chemotherapy right now to destroy her immune system in preparation for her transplant.

Though she can't even sit up, she has been approached by Katie Couric and is exploring the possibility of going on national television to encourage people to join the registry, Mullins said. People of minority heritage particularly are needed because they are underrepresented in the registry.

Buckley's husband, Andrew, reached out to baby Giovanni's family after the two patients coincidentally held bone marrow drives on the same day. They now plan to work together to keep public awareness focused on the need for donors.

Local efforts so far have already made a difference, Giovanni's father said.

Of the people in New England who registered as potential donors in Giovanni's name, at least 67 already have been identified as potential matches for somebody else, Michael Guglielmo said.

"This is about mothers and fathers and brothers and sisters who care," he said. "People are fundamentally good and they want to do good things but they don't have a lot of opportunities to do good things. This is one. There's no higher, greater cause or noble action than to save the life of a child."



.......................

SIDEBAR - Making the commitment

It's relatively easy to get on the international bone marrow donation registry - just go to a local drive, fill out some papers and get your cheek swabbed.

The decision to do it, though, should not be taken lightly, said Elise Collins, donor center manager of the marrow program at Dana Farber Cancer Institute in Boston.

At any point until you turn 61, your sample could be matched with an anonymous person anywhere in the world and you could be called upon to save his or her life.

The donation requires either minor surgery, in which bone marrow is withdrawn through a special hollow needle, or a process similar to donating blood.

Both methods involve some discomfort for the donor, Collins said, and may require time off from work.

The donation always is voluntary and the donor can say no at any point in the process, she said. But but if somebody knows they don't want to follow through with a donation it's better to stay off the registry than to join and be put in an uncomfortable situation once a match is made.

"There's nothing worse than calling someone when they come up with a match and have them say, 'Is that what I signed up for?'" Collins said.

John Talley, pastor of Calvary Bible Church in Derry, said he thought a long time before entering the registry. He knows a lot of potential donors at his church's bone marrow drive last month thought a lot about it, too.

"If you're a match for somebody, there's the potential for a pretty significant medical procedure," he said. "For a guy like me who's scared of needles, that's a pretty significant thing."

Ultimately, the stories from people who had donated are what made up his mind, he said.

"It was amazing to see the connection that goes on," Talley said. "Their lives intersect."

That's what it was like for Linda LeBlond, a donor who lives in Windham, N.H. LeBlond just got a card a couple weeks ago from the man to whom she donated blood stem cells in February 2006.

He is 65, lives somewhere in Europe and had non-Hodgkins lymphoma. LeBlond, as far as she knows, was the one person who could save his life.

"It's still amazing to me that you can do something like this," she said. "To me it was such a simple process to save somebody's life. I would do it again in a minute."



Bone marrow donation by the numbers

* More than 6 million people worldwide have submitted a blood or cheek swab sample and are now part of the National Marrow Donor Program to be potential donors. About 4 million more are registered through other organizations.

* The marrow program at Dana Farber Cancer Institute has 46,000 to 47,000 potential donors registered in the Boston region.

* An estimated 35,000 adults and children each year have life-threatening diseases that could be helped by a marrow or blood cell transplant.

* About 3,200 people on the National Marrow Donor Program list were called upon to actually make a donation in 2006. The program sets up more than 260 marrow or cell transplants each month.

* At any given time there are about 3,000 patients worldwide searching for a donor.

Source: National Marrow Donor Program and the donor center at Dana Farber Cancer Institute.

Bone marrow 101

A bone marrow transplant can save the life of a person who has leukemia, lymphoma or another type of blood cancer. Bone marrow may also be used to treat people who have an immune system illness or inherited disorder.

The new bone marrow replaces the patient's own bone marrow, which may have been destroyed by the disease or chemotherapy. Since the bone marrow is the place where immune cells are created, a bone marrow transplant is essentially an immune system replacement.

Sources: National Marrow Donor Program and MedlinePlus Medical Encyclopedia.

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Upcoming drive

Northern Essex Community College will hold a bone marrow drive Wednesday, April 25 from 9 a.m. to 3 p.m.

Potential donors must be age 18 to 60 and in good health. Joining the registry involves a simple cotton swab of the cheek. The procedure is free. If you have health insurance, bring your insurance card.

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