Transplant recipient marks 20-year anniversary, eclipse
Apr. 8—While millions are expected to be looking skyward today, the Pless family of Meadville will spend part of their day looking to the past. They'll be looking skyward too, of course, but April 8 means much more to them than just a few minutes of mid-afternoon darkness.
Twenty years ago today, in an event even more remarkable than the moon passing between the Earth and sun, Julia Pless, then 7 years old, gained a second birthday — the day she still refers to as her "bone marrow birthday."
On Friday, Julia, her older sister, Victoria, and her parents, Janice and Peter, gathered around a coffee table covered with laminated Meadville Tribune stories from around that time to recall the bone marrow transplant that saved Julia's life and the community support that helped the family through the harrowing experience.
That the occasion coincides with the eclipse is a nice bonus: On T-shirts the family had made to commemorate Julia's transplant, an eclipse image substitutes as the zero in the phrase "Julia's 20th Bone Marrow Birthday."
"I do love space — I find it very fascinating, even if it's not something I went into as a career," Julia said before thinking back to a 2017 partial eclipse visible in the Meadville area. "So, forever ago when the last eclipse happened, I looked up to see when the next one was going to be, and it said it was going to be on my bone marrow birthday — so I made sure to write it down so I would not forget."
Julia made a note of the coming eclipse, still years away, so she wouldn't forget it. Now that it's here, the cosmic convergence serves as a reminder that there was a time when it was doubtful she'd be able to make such plans.
"If there hadn't been a match," said Janice, her mom, "she wouldn't have survived."
The bone marrow transplant became necessary after Julia was diagnosed in 2003 with Fanconi anemia. A rare genetic disorder that can severely impair the ability of bone marrow to produce the stem cells that become red and white blood cells and platelets, Fanconi anemia affects one in about 160,000 people, according to the Cleveland Clinic.
When her family members proved to be unsuitable matches for a bone marrow transplant, the family turned to the public in Meadville as well as the National Marrow Donor Program registry in hopes of finding someone who not only was a match but was also willing to donate marrow to a stranger.
A drive to test and register potential donors was organized in Meadville and drew more than 600 people, the family recalled. At the time, the testing process cost about $125, Peter Pless recalled, and many participants paid to be tested while additional donations helped supplement the cost for others. Though finding a match for Julia was unlikely, the campaign helped raise awareness and the family knows of at least one person who went on to become a donor as a result.
As the weeks passed, what had started as unusual sores in her mouth and susceptibility to easily bruising — Victoria recalled a particularly impressive shiner that her younger sister received after tripping and falling at a birthday party — grew more and more serious. With her bone marrow increasingly compromised and her body unable to fight off infection, Julia stopped participating in gymnastics and then stopped attending school regularly.
After six months, a donor was identified. Julia and her mother traveled to Fairview University Medical Center in Minneapolis, Minnesota, staying there for four months while Peter and Victoria remained in Meadville and made brief visits as they could. Isolated and fed through a central line, Julia underwent chemotherapy treatments and eventually total body irradiation to eliminate her failing bone marrow in preparation for the transplant.
"She still says to this day," Peter said of the radiation treatment, "that was the worst day of her life."
Julia doesn't remember every detail of those months, but she described the large machine that loomed above her and one uncomfortable contortion after another, each of which had to be held seemingly forever, as medical personnel shifted her for successive beams.
"I definitely remember the radiation," she said. "It was not fun at all."
Finding herself essentially helpless, her response at the time was to try to control as much as she could, tracking the numerous medications she was being given and retaining charge of her appearance. Even as more and more of her hair fell out, she recalled, she refused to let anyone cut what remained.
The transplant itself was a bit anticlimactic, she added. Unlike the organ transplants most people envision when they hear the term, the marrow transplant was akin to a complicated blood transfusion — though one in which the recipient receives "a bag of life," Peter noted.
The life-saving experience was worth it, of course, but Julia still lives with Fanconi anemia. Even decades later, Julia still attends regular screenings and appointments with five doctors. While her blood disorder was cured, she still experiences other effects of the disorder and both the condition and the radiation treatment she underwent dramatically increase the possibility of cancer.
Nearly as meaningful, the family said, was the support they received at the time from family, friends, community members and even strangers like Lynette Truelsen, the Montana woman whose marrow saved Julia's life and who visited the family on Julia's five-year "bone marrow birthday."
"We just want to thank everybody who helped us back then," Peter Pless said.
Julia's continued presence is perhaps its own daily form of thanks. In June, she will marry her fiance, Gregory Middendorf.
"I just try and live my life," she said.
YOU CAN GIVE
To mark her 20-year "bone marrow birthday," Julia Pless is holding an online fundraiser to benefit the Fanconi Anemia Reserch Fund at fundraise.fanconi.org/campaign/20-years-a-celestial-celebration/c574969. She's hoping to raise $5,000 and an anonymous donor has pledged to match up to that amount.
Mike Crowley can be reached at (814) 724-6370 or by email at mcrowley@meadvilletribune.com.
