Temple members with rare marrow disease hold swab drive

A five-minute cheek swab saved Hilarie Lieb's life

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By Nona Tepper

Hilarie Lieb has already scheduled a date to go to Bath & Body Works with friend Janice Patterson to pick up the slippers, soap, sanitizer and everything else that Janice will need before she receives her stem cell transplant. 

After receiving the same transplant in April 2016, to treat the same rare bone marrow cancer, Lieb feels confident her advice on treating acute myelofibrosis will help her friend. But the two are still marveling at the odds. At the relatively small River Forest congregation of Temple Har Zion, who would guess that two members would be diagnosed with the same rare disease? 

"How lucky am I that I have a friend who's gone through it and can help me with the weird stuff, like what kind of clothes should I bring to the hospital?" Patterson said. "While I wouldn't wish it on her, it's kind of nice to have this bond and feel this is normal." 

Lieb isn't the only one helping Patterson. To raise awareness and show support, congregation members are holding a bone marrow donors drive from 10 a.m. to 1 p.m. on March 4 at the temple, 1040 N. Harlem Ave. Attendees will have their cheeks swabbed and names added to the international Be The Match registry. 

"It literally takes just five minutes to swab your cheek and do the paperwork, unless you stop for coffee and cake," Patterson joked, calling on people from all walks of life, age 18 through 44, to donate. If they're deemed a match, donors will later be called upon to donate blood. Doctors then remove the stem cells from the blood, which can be used to treat leukemia, lymphoma, sickle cell anemia and much more. Those who are unable to attend can register online at join.bethematch.org/OakParkCares. 

After struggling with myelofibrosis her entire life, doctors realized Patterson's blood disorder had gone through a fatal transformation about a year ago. Her only option was a stem cell transfusion. 

"Without it, I was told I have basically two years of life left," she said. 

She turned to her friend for advice, since Lieb went through a successful procedure about two years ago. 

After surviving on ibuprofen and coffee for a few months, Lieb realized something wasn't right at a routine doctor's visit in June 2015. Her doctor discovered her chronic blood illness had transformed into something more serious and that, if left untreated, would turn into leukemia. 

Lieb felt scared when she heard the news and prepared herself for a range of possibilities. She looked to her siblings for a match, but that turned out to be a dead end. She consulted the registry, hoping a generous stranger had the 10 matching proteins necessary for a successful transfusion. A month later, she got a phone call that she says saved her life. Doctors had found a perfect pair in Be The Match and, as she put down the phone to tell her family, her husband Morrie teared up. 

"I think I can remember a handful of times my husband got tearful during our marriage, and this was one of them," Lieb said. "It was just something we had no control over; we're just at the whim of who had gone ahead and gotten their mouth swabbed." 

Her daughter Megan moved up the date and location of her wedding in case Lieb's risky procedure didn't go as planned. Lieb made plans to get the procedure done at the Mayo Clinic in Rochester, Minnesota, securing a temporary apartment where she stayed after going through the five rounds of intensive chemotherapy that wiped out her immune system. She then waited as the stem cells grew in her body. Two years later, she's now fully recovered and again working full-time as a professor at Northwestern University. 

After the procedure, Lieb had the opportunity to meet her donor. "There's no question in my mind that he saved my life," Lieb said, adding: "It's quite amazing to tell you the truth. It takes a little time to donate, but I can't imagine you get as big a reward after doing something like this. You really can save someone's life." 

CONTACT: ntepper@wjinc.com

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Frank Patterson from Oak park  

Posted: February 28th, 2018 2:47 PM

There's a real need for donors who are African-American, Latino, or biracial! Please spend a few minutes with us on Sunday

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