Finding Family and France, Figuratively: One Lymphoma Patient's Stem Cell Transplant Story
Jodi Lown has always dreamt of going to France. A Tour de France fanatic, she wishes to experience the French countryside, someday. She had no idea a lymphoma diagnosis would bring France to her, in the form of a stem cell transplant, or that she would find a way to return an act of kindness to a Wilmot health care team who she says became like family.
Diagnosed in 2016 with an aggressive type of follicular lymphoma identified after a fluke with her regular mammogram, Lown had an autologous stem cell transplant, meaning her own blood stem cells were used to replace damaged ones. The transplant with her own stem cells was unsuccessful, so she needed help from someone else.
Lown has four older sisters, but after being tested, they were all only half-matches. Her team, led by hematologists Carla Casulo, M.D., and Omar Aljitawi, M.B.B.S., felt that cord blood would lead to a better outcome. They found only two adequately matched cord blood units through the entire Be the Match international registry. Lown would need both units to have a successful double-cord blood stem cell transplant. In this type of transplant, the stem cells came from umbilical cord blood. After a mother gives birth, the baby’s umbilical cord and placenta are typically discarded. However, mothers can choose to have the umbilical cord blood preserved in a public bank to help people like Lown who may need a transplant or to be used for medical research.
Research shows that, when it comes to a stem cell transplant, having a closer match may lower the risk of graft-vs-host disease, a condition where the body tries to fight the new stem cells, causing uncomfortable symptoms like dry mouth, skin rash, and hair loss that can last months beyond the initial transplant. Luckily, with cord blood transplants, the risk of chronic graft-vs-host disease is minimal.
Despite its benefits, there are still risks with this type of transplant, such as early infections or other complications. Aljitawi, a stem cell transplantation specialist, says double cord blood transplantation is a relatively newer treatment performed at a limited number of cancer centers. Wilmot has performed the procedure for the last few years and is involved with clinical trials working to learn more and improve this treatment option.
Moving forward with this transplant opportunity, Lown checked in to Wilmot’s Samuel E. Durand Blood and Marrow Transplant Unit, on the sixth floor of the Wilmot Cancer Center (WCC6) in April 2021. After an initial round of chemo and radiation, she received stem cells from the preserved cord blood of two different donors. The first donor was a European baby who’d been born about 10 years ago. The second donor, from the U.S., had been born about two years prior to Lown’s transplant.
When the bags of stem cells arrived in Lown’s room at Wilmot, she noticed that the European donation had come from France.
“They are the only two donors in the world who matched me,” she says. “We think the one from France was fate.”
It took about 30 minutes for each IV to drip into her blood stream, giving her a second chance, and a second birthday: April 9, 2021, her transplant day.
And, despite being hospitalized during a time when visitation was very limited because of COVID-19, Lown still found ways to celebrate this milestone by making her room fun and inviting; making it hers. Posted by her room’s door, she had a large, eye-catching photo of her favorite cocktail, a Bloody Mary, complete with skewered buffalo wings on top. She brought a little basketball hoop and a tiny golf green to practice putting holes-in-one from her room, and sometimes, she’d invite staff to join her in the fun.
One day toward the beginning of her hospitalization, she received a package of dry erase markers and decided this could be another way to bring joy. She asked anyone who entered her room to draw on the window with the dry erase markers, leaving a note, a picture, a personal message, or anything else.
She loved looking up at the words and images to feel surrounded by her WCC6 team and to remember that she is not alone.
“The nurses are in here all day and they have become my family this past month,” she says. “They are the ones doing all the work, taking care of us and me.”
On days when light from the sun hits just right, it washed the room in colorful messages.
“It brought me joy,” she says.
When asked what she would say to the donor families, if she could say anything, the first thing that came to mind was a giant thank you, tears welling up.
And just as those families in France and the U.S. helped Lown, she wants to help others. She donated gift packages of dry erase markers to the unit for other patients to use, to help them draw or write to celebrate their own second chance, their own new transplant birthdays. She even talked about having a friend draw a French flag and a bicycle for her, to celebrate her donors and her dream of someday going to France.
But for now, she revels in the colors, the art, and the messages found at home, hoping to give other patients the same joy and light, despite cancer.
“Life is too short to give in to what we’re going through,” she says with a smile.
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