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Search for bone marrow donor [The Journal]

by Hope Katz Gibbs
The Journal
Sept. 13, 1998

When 30-year-old Michelle Crosby of Falls Church, Va., then six-months pregnant, returned home from a weekend getaway in April, she felt terrible.

“I was really dehydrated and exhausted and I just didn’t think it was normal,” she says.
After a slew of blood tests, her obstetrician found Crosby had a dangerously elevated white blood cell count. At 35,000, it was more than three times what’s considered normal.

More tests followed and other specialists were consulted. Finally, on May 6, the diagnosis was delivered.

Crosby has leukemia, a cancer of the bone marrow characterized by uncontrolled growth of blood cells. The fact that she was pregnant made the situation perilous. It also may have saved her life.

“I feel pretty sure that we wouldn’t have caught my disease for about a year if I wasn’t pregnant,” says Crosby, who is suffering from chronic myelomonocytic leukemia, a version of the disease that is usually asymptomatic until the spleen is enlarged. By then, the situation can be dire. “I consider myself very fortunate.”

Her baby may also offer a possible treatment, for a bone marrow transplant offers her the best chance of a cure. For most patients, finding the perfect marrow match is the challenge.

The gelatinous substance, manufactures red and white blood cells, platelets containing the cells responsible for marrow the immune system. So the match must be closer than for even a heart or liver transplant. In organ transplantation, a patient’s body may reject the organ but in marrow transplantation, the donated marrow may attack the patient’s body.

So before most hospitals will do a marrow transplant, the donor and recipient must have a six out of six match of their human leukocyte antigens, the proteins found on the surface of white blood cells.

“Everyone has two sets of HLA proteins; one set inherited from each parent,” says Dr. Susan Leitman, medical director of the National Institutes of Health Marrow Donor Center, one of 100 centers nationwide that coordinates bone marrow donations. “For this reason, about 30 percent of patients can find a match donor among their family members and it’s usually a sibling. Of course, there are millions of possible HIA combinations, which makes finding an unrelated perfect match more difficult.”
In Crosby’s case, her only sibling, a 22-year-old . sister, wasn’t a match. Neither was her 2-year-old son, Harry.

Would her unborn baby be a match?

No, it turned out. On July 17, Crosby gave birth to a 5-pound daughter named Margaret Maura. Maggie, as she’s called, did have her cord blood harvested, however. It is the newest approach in the field of marrow harvesting, where blood from a baby’s umbilical cord is removed following delivery.

“Cord blood is packed with stem cells [also called marrow], the building blocks of the immune system,” says Dr. Antonio Torloni, associate medical director of the Fairfax Stem Cell Processing Lab at Fairfax Hospital. “This blood, which is normally disposed of, shows great potential for patients overcome leukemia, Hodgkin’s disease, anemia, and other disorders.”

The marrow found in cord blood may actually work better for a patient suffering from a disease, such as leukemia, Torloni says, for there is a lower risk of infection and complications when marrow comes from a newborn rather than an adult.

However, retrieval of cord blood is still in its infancy. Fairfax Hospital has teamed up with the New York Blood Center to participate in the program, and Georgetown University Medical Center, where Crosby delivered her baby and is being treated for leukemia is active in cord blood retrieval.

Unfortunately, only babies born during daytime hours are candidates for cord blood retrieval because trained collectors who usually work the day shift can only gather it.

Because Maggie wasn’t a perfect marrow match, her cord blood remains only a possibility for her mother. A more likely option is to find a donor through the National Marrow Donor Program, a list of about 3.2 million people who have registered nationwide since the program began in 1987.

“Patients have a greater likelihood of finding a match from someone whose ethnic background is similar,” Jaime Oblitas, program manager of the NIH Marrow Donor Center, says. “Because Michelle Crosby is a Caucasian of western European descent, she has an 85 percent or better chance of finding a donor, for there are about 1.8 million Caucasian donors registered.”

Blacks, however, have on percent chance of finding a match because only 255,000 of 3.2 million registered are of African-American descent. Asians have a 60 percent chance of finding a donor; there are 189,000 Asians and Pacific Islanders registered. Hispanics, with 238,000 registered marrow donors, have a 72 percent to 75 percent chance of finding a match.
As a result, the NIH Marrow Donor Center is pushing for healthy, individuals from minority backgrounds to sign up to be donors. “The need is tremendous,” Oblitas says. “A marrow transplant is often the only treatment for someone with leukemia.”

According to the Leukemia Society of America, in 1998, 28,700 new cases will be diagnosed with 400 new cases in Maryland and 700 in Virginia.

More than half of the cases will be in people over 60, although four in every 100,000 children are, diagnosed with the disease. About 21,600 people are expected to die from leukemia this year—about 12,000 men and 9,600 women.

Before bone marrow transplant became an option in the mid-1970s, nearly all leukemia patients died.

“In 1960, the survival rate was 14 percent,” NIH’s Oblitas says. “Today, the overall five-year survival rate for patients with leukemia is 42 percent and that number has tripled ii-i the last 38 years.”

With an 85 percent or better likelihood of finding a donor to match her marrow type and a 42 percent chance of survival, Crosby remains optimistic she will beat leukemia. She is actually healthier since she delivered Maggie in July. Her blood counts are normal but she still needs to have a transplant soon, or she could die.

What keeps her spirits high, she says, is her two children and husband, Joseph.

“Nobody in my house treats me like I’m sick,” Crosby says. “My husband is understanding, but he also says ‘please, honey, go food shopping today.’ I think my baby and my son help most of all. At the point where I would have otherwise given up hope, I knew I couldn’t. First I was pregnant, now I have a newborn and a toddler. The only thing I can do is be strong and work hard to be optimistic.”

Crosby also has a strong support system. About two-dozen friends have joined forces to help her find a donor. They have spent the last four months distributing fliers in neighborhoods from Alexandria, Va., to Falls Church, Va., doing research on her disease and providing emotional support to Crosby.

They also put a website up on the Internet in hopes of raising funds to help pay for the $20,000 to $200,000 of uninsured medical expenses. Her friends also created the National Transplant Assistance Bone Marrow Fund in her honor.

“Michelle faces four to six weeks of hospitalization and two to four months of outpatient treatment after she gets the transplant,” says Lillian Lippencott, founder and chair of the fund, and friend of Crosby’s since college. “When all is said and done, she will incur substantial expenses related to bone marrow testing, nursing and outpatient care, home medical supplies, medications and travel.”

Another friend and fellow fundraiser, Cathryn Sacra of Alexandria, says Crosby’s buddies have banded together because it is a way for them to deal with the frustration, anger and sadness that comes when a close friend is facing a life-threatening disease.

“I think we all realize that if this disease can strike Michelle, it can happen to any of us,” Sacra says. “Most of us have small children. I find myself looking at my young daughter and thinking, what would I do if it happened to me? It is just so frightening. I have no choice but to try and help.”

FIRST CONNECTION

The Leukemia Society of America will be promoting its new program, First Connection, throughout September, which has been designated as National Leukemia Awareness Month.

The program matches newly diagnosed patients with leukemia, lymphoma, Hodgkin’s disease and myeloma with people who have been cured, are in remission or are coping well.
“The goal of this program is to provide newly diagnosed patients and their families
with information, support and hope,” says Sarah Singer, patient service manager of the National Capital Area Leukemia Society of America.

Friends of Michelle Crosby are sponsoring several events this month, including a drive on Sept. 13, 8 to 10 a.m., at the Fair Lakes 8K Race and 2K Fun Run at Fair Lakes Circle in Fairfax, Va.

FROM THE DONOR’S POINT OF VIEW

Is it painful to be a bone marrow donor? No, says Erika Sparks, 29, of Silver Spring. Md.

Of course, Sparks didn’t know that when she signed up to be on the National Marrow Donor Program in 1990, while studying for an engineering degree at the University of Maryland at College Park. She simply decided to give a blood sample and get on the registry because she thought it was a nice thing to do.

So, when the National Institutes of Health Marrow Donor Center called her in April 1994, she was shocked.

“I gave a blood sample on the spur of the moment in 1990, but I didn’t think I’d ever be called,” Sparks says. “When I was a match, I had to think about what I wanted to do.”

After a second blood test that proved she was the best match for the recipient, a physical and an hour-long educational lecture on the donation process, Sparks decided to donate some of her marrow. The date was set for June 4, 1994. She checked in to the Georgetown University Medical Center at 6 a.m., where she got an epidural block, an injection of anesthesia that numbs the spinal cord area but allows the patient to be awake during the procedure.

Sparks spent the 45-minute procedure chatting with the doctors and nurses. “I couldn’t see what was going on and, didn’t feel a thing,” she says.

Beneath the sheet, though, doctors were using a long needle to aspirate about 400 to 800 milliliters marrow from her pelvic bone, the broad flat bone under the backside. The harvested marrow was then sent via courier to the recipient who may have been in the same hospital or, more likely, somewhere else in the country.

Once the marrow arrived, it was given immediately to the patient by transfusion. This is actually the easiest part of the process for the patient, doctors say, for the next weeks are spent suffering through chemotherapy and radiation to rid the body of the leukemia and kill the immune system so that the marrow isn’t rejected.

For Sparks, however, once the anesthesia wore off she was good as new.

“When they took me back to my room, I was able to get up and walk around right away,” says Sparks, who never knew who got her marrow since it is the policy of the transplant program not to divulge that information for one year. Granted, she says she wasn’t running anywhere fast, but she could walk around.

“When I think back, I don’t really remember how much it hurt,” she says. “More, I remember how excited and proud I felt and how humbling it was to give something to someone that I knew could save their life. I would do it again in a heartbeat.”

Sparks was so moved by the experience, that she took a job working at NIH Marrow Donor Center in Rockville. She is a recruitment specialist in the Hispanic community.

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"I get by with a little help from my friends," says Hope, who gives special thanks to:

• MICHAEL GIBBS, website illustration and design: www.michaelgibbs.com
• MAX KUKOY, website development: www.maxwebworks.com
• STEVE BARRETT, portrait of Hope on Bio page: www.stevebarrettphotography.com

Contact HOPE KATZ GIBBS by phone [703-346-6975] or email.

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