Maddie's story: From bone marrow donor to family

August 2, 2019
Maddie meets her bone marrow donor
PHOTO: Courtesy of patient, Maddie

Meeting the woman who helped save Maddie’s life. If you haven’t read part 1 of Maddie’s journey, click here.

Diagnosed with a rare and high-risk form of cancer, hypodiploid acute lymphoblastic leukemia, the Stanton family knew they needed to pursue an aggressive treatment option for their 7-year-old Maddie.

While success rates for children with ALL have increased substantially over the years, at the time, the rare type of ALL Maddie had, reported an average five-year survival rate of only 10% if treated with chemotherapeutics.

Under the medical guidance of Dr. Rachel Rau, and the team at Texas Children’s Cancer Center, Maddie’s family learned her best chance for long-term survival was to undergo an urgent bone marrow transplant.

“We quickly learned the unfortunate truth that Maddie’s brother wasn’t a match,” Denise Stanton, Maddie’s mother, said.

However, with the help of Be The Match, Maddie was blessed to find 10 perfect matches across the U.S., one of those was a young woman named Jess, who, at the time lived in Minnesota working on her Ph.D. in History.

“Be The Match contacted me and told me I was a match for a 7-year-old girl. To be honest, I didn’t even really give it a second thought—how do you say no when you are told you are someone’s best chance at survival? And especially when that someone is just a child,” Jess Farrell, Maddie’s bone marrow donor, recalled.

In fact, when Jess signed up for the registry in college while attending Washington University in St. Louis, Maddie had yet to be born.

“All we knew at that point was that the donor was a female in her mid-20s and agreed to save our little Maddie,” Denise reflected.

Though Maddie developed two serious complications after her bone marrow transplant, Jess answered “the call” again without hesitation and donated additional life-saving stem cells about nine months later.

“We were so grateful to this amazingly altruistic young woman we had never met, and more than anything wanted to meet Maddie’s genetic twin, Jess. Normally, you can meet your donor after a year if both parties are agreeable. However, because of Maddie’s complications and Jess’ second donation, it restarted our clock,” Denise explained.

So, for another year, the family waited to meet the woman who gave their daughter her second chance at life. In 2016, around Thanksgiving, the Stanton family was finally able to reach out and see if Jess was willing to meet. She said yes.

The family was so eager, they set up an initial conversation via Skype, knowing that trying to meet in-person would be more challenging.

“We were so excited to speak with her. That first conversation, we did introductions and had the opportunity to learn more about her: her life, her family, and we shared more about our family as well,” Denise said.

After that, Jess and the Stantons continued to communicate and follow each other’s lives via social media, hoping for a chance to meet in person. But, given the busy schedules of both the Stantons and Jess, the first few attempts didn’t work out. Timing was always an issue.

If you are at least 18 years old, and would love to support Maddie in your own way, please consider joining the marrow registry.

Everything changed though when Jess invited the family to her wedding.

“Our immediate answer was yes! We didn’t even have to think about it,” Denise remembered.

So, over Memorial Day weekend in 2019, the Stantons left their home in Texas and headed to Jess’s new home, Geneva, New York—set on the north edge of Seneca Lake, to celebrate Jess’s special day with her and, for the first time, to meet their lifesaver in person.

[read:] A news article from the Finger Lakes Times documenting this first meeting in person

“The first festivity of the weekend was on Saturday morning at a beautiful park on the lake. It had just started pouring down rain and we were running to the pavilion where the braai was being held. Jess’s husband, Virgil, is South African and they wanted to honor his heritage as well as hers that weekend and the braai – which is a South African BBQ – was a perfect way! As soon as we walked up to the entrance, Jess met us. We all hugged each other. I was happy, nervous and excited all at the same time,” Denise recalled.

Maddie, dressed to the nines, danced the whole night in her high-heel shoes.

“We felt so blessed to be able to share in her special day, to meet her, Virgil, and all of her family. It was important for us that Jess see Maddie; to see how far she’s come and share with Jess that none of this would have been possible without her. Without a donor, the best physicians in the world couldn’t have saved our Maddie,” Denise said.

The festivities continued all weekend and the Stantons spent their time getting to know Jess and her family.

“It was amazing how much it felt like the Stantons had always been part of our family.  One of my husband, Virgil, and my priorities in arranging our wedding weekend was for the different parts of our families and lives to really get to know one another—and the Stantons really took that to heart!  It meant so much to us to see how the Stantons embraced our families and how our families embraced them right back,” Jess said.

“We will never forget the joy in Maddie’s face that weekend,” Denise remembered fondly. “I tell Maddie all the time, Jess didn’t just save you that day, she saved our whole family. She saved all of us.”

There are thousands of people with blood cancers – like leukemia and lymphoma, sickle cell anemia or other life-threatening diseases who depend on the Be The Match Registry to find a match to save their life.
****There is a particular need for donors of more diverse ethnic backgrounds. The cure is in your heritage, not your blood type. #HeritageHoldsTheCure

Post by:

Texas Children's Hospital