LEWISTON – Doreen Flynn lives in Lewiston and Barbara Reichert in California, but chance and circumstance have linked them in the same daunting search to keep their loved ones alive.

Reichert’s husband, Tom Jalbert, is from Lewiston. A year ago he was diagnosed with leukemia.

Flynn’s three girls – Jordan, 10, and 4-year-old twins Julie and Jorja – have been diagnosed with a rare blood disorder called Fanconi anemia.

All four need bone marrow transplants to help their chances of survival.

“We just found this out a month ago,” Reichert said. “At first, (Tom) was put on a new medication that works for a lot of people so that they don’t need a transplant. But it hasn’t worked for Tom.”

Reichert said she started researching online and discovered a group, DKMS, that helps individuals organize bone marrow drives. She learned her husband’s best chance for finding a match was among people with a common ethnic background, which in his case is French and Polish ancestry. So, Reichert decided to organize the drive in Lewiston, where Jalbert still has family. It’s scheduled from 10 a.m. to 2 p.m. on Nov. 22 at Farwell Elementary School.

“I’m worried and crazy and doing a bunch of research,” Reichert said. “I’ve never done a drive.”

Chance and a tightly knit community stepped in and brought Reichert and Flynn together.

“We were back in Maine a couple of weeks ago, and I was telling (Tom’s) family we were going to do this, and his aunt works at the Farwell School. She said, ‘Oh, my gosh, there are a couple of girls that go to school here that also need bone marrow transplants,'” Reichert said. “So, I talked to Doreen and we thought, well, why don’t we do this together?”

For Flynn, the drives are nothing new. Since her daughter Jordan was diagnosed about five years ago, one month before her fifth birthday, Flynn has participated in at least 10 drives.

“The odds are kind of against you, so to speak,” Flynn said of finding a match. “Life expectancy right now, without a transplant, is about 18 years old.”

Flynn has five children in all, but the boys, James, 11, and Jacob, 6, do not have the disorder. Nor are they genetic matches for their sisters.

“I’m grateful Barbara included me in this,” Flynn said.

She said her daughter Jordan is a “social bug” and loves art, but her illness is taking a toll.

“She’s way more mature than a 10-year-old should be because of this,” Flynn said. “I really try to keep her quality of life as best we can. She does go to school regularly, so that’s a plus.”

Seeking ‘genetic twin’

Fanconi anemia is rare, with about 1,000 cases documented worldwide. It causes bone marrow to stop making enough new blood cells for the body to work normally, according to the National Heart, Lung and Blood Institute. It is an inherited condition, which results when both parents pass on the same abnormal gene to a child.

Flynn said her twins are not exhibiting many symptoms yet, but Jordan gets tired more quickly than other kids, bruises easily and if she gets a cut, she has to go to the hospital because her blood will not clot.

Even a successful transplant would not guarantee Jordan, or her twin sisters, long, healthy lives. Each would still be at serious risk of developing cancerous tumors and some types of blood cancer, according to the institute. But without a transplant, their prospects of survival are significantly worse.

The challenge facing both families is finding what Tom Jalbert calls “a genetic twin.”

Though there are 7 million people entered in the national bone marrow registry, and an additional 4 million worldwide, no match has been found for Jalbert or the Flynn girls. Only three of 10 patients find matches, according to DKMS.

But each family hopes advances made in the donation process will boost local turnout at the drive.

Bone marrow donation used to require an outpatient procedure and extensive recovery time, in all cases. Now, about 80 percent of donations are stem cells taken directly from the donor’s blood, rather than marrow harvested from their bones.

Flynn said the new process is similar to what Jordan goes through four times a year as part of her treatment.

“A lot of people associate donating bone marrow with pain,” Flynn said. “But now I can look at them and say, ‘My 10-year-old does it. If she can do it every three months, you can do it once in a lifetime.'”

Pollie Robbins of San Francisco went through the stem cell donation process about seven years ago, when it was first being developed. Robbins, who works in the same office as Barbara Reichert, said the experience was nearly painless and occupied only a week of her life.

“I felt achy and a little bit flu-like, but I was definitely able to continue my daily routine,” Robbins said. “It was a way to connect with somebody else and to help someone that I didn’t even know. And it just felt really good.”

Odds are long

Participants in the donor drive will be asked to write down their contact information and get their cheeks swabbed with cotton. DKMS, the group organizing the drive in Lewiston, pays the $65 lab processing fee, so it costs donors nothing. The data is then entered into the national registry.

Jalbert said he is taking medication for his leukemia and is able to continue going to work every day as an information technology manager in California.

“There are people that have it worse than I do, that’s for sure,” he said. “Emotionally, though, we’re probably all taking the same toll.”

Jalbert said he knows the odds of finding a match are long, but he’s determined to try.

“It’s not entirely about me or the Flynn girls; it’s about everybody that’s looking for bone marrow,” he said.

His wife said organizing the drive means more than possibly helping her husband.

“If someone you know might die, you would do anything,” Reichert said. “Of course, I hope that we find my husband or one of the girls a match, but if not, we’re going to save other peoples’ lives by all the work that we’re doing.”

To find out more about donating, visit www.marrow.org or www.dkmsamericas.org.

What: Bone-marrow drive

When: 10-2 Saturday, Nov. 22

Where: Farwell Elementary School, Lewiston

FMI: www.marrow.org or www.dkmsamericas.org


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