Just days before Lizzie Tennyson’s first day at UT in fall 2019, her cancer reappeared for the fifth time.
Tennyson, who intended to study computer engineering, died March 30 after battling leukemia six times over nine years. Before her death, Tennyson teamed up with Texas 4000, a UT organization that promotes awareness for cancer, and Be The Match, a federal nonprofit that connects bone marrow donors with cancer patients so she could find a donor match.
“She was just really devastated (when her cancer reappeared) because she had wanted for so long to go to UT, ever since high school,” said Susan Tennyson, Lizzie’s mother. “It was clear in the fall that a bone marrow transplant was the only option that we had. She just said, ‘OK, I’m going to do this. I’m going to find a donor.’”
According to the Be The Match website, human leukocyte antigen types, which are used in matching bone marrow, are inherited, so a person’s best chance of finding a donor may be with someone of a similar ethnic background.
Since Lizzie was biracial, she had to find a biracial donor with similar marrow to her, said Brenda Garza, a community engagement representative from GenCure, a laboratory that recruits marrow donors in partnership with Be The Match. In the current registry, biracial people such as Lizzie only have a 14% chance of finding a match, Garza said.
White patients have up to an 77% chance of finding a match, American Indian or Alaska Native have a 57% chance, Hispanic patients have a 46% chance, Asian or Pacific Islander patients have a 41% chance and African American patients have a 23% chance, according to the Be The Match website.
“If we don’t participate and if we don’t add our names to the registry, people like us don’t have chances to survive a disease like this,” Garza said. “The first thought (after her death) was, ‘Why? Why couldn’t we find a match for her?’”
Treatments such as chemotherapy, drugs and immunotherapy failed to permanently cure Lizzie’s cancer since her diagnosis over nine years ago at age 13.
In December, Lizzie and her family were interested in an experimental treatment in Seattle, Susan said. However, she became too sick to be transported, and by the time she was well enough to travel in March, Seattle had been placed under lockdown due to COVID-19, Susan said. With the only other treatment in Seattle closed off by the coronavirus, Lizzie needed a bone marrow transplant to find a cure.
“(It) just kept mutating to fight off whatever we were throwing at it to get rid of it,” Susan said.
A bone marrow transplant would have completely replaced the mutating cancer DNA that was causing Lizzie’s persistent leukemia, effectively curing her, Garza said.
Texas 4000 and Garza helped organize bone marrow drives to try and find Lizzie a match. Days before her death, doctors found two units of umbilical cord blood that matched Lizzie 90%, Susan said. Doctors could attempt to transplant using that blood, but this treatment only works well with babies and young children, she said, and Lizzie only had a 24% chance of success.
“In the end, doctors asked if she wanted to continue with the treatment or donate the units to another child who was also a match,” said Anthony Edgington, a member of Texas 4000 and a friend of Lizzie. “She said she would give the units to someone who had better chances than her. Lizzie died giving up those cord blood units to another cancer patient.”
Edgington, a geological science, geosystems engineering and hydrogeology senior, said he was heartbroken and surprised to hear Lizzie had passed.
“It just seemed like she was never going to give up,” Edgington said. “Every time I saw her, she was just so energetic and full of life and strong, and in my head, I thought she was going to beat it. I knew she was going to beat it. She must beat it.”
Had there been more ethnically diverse donors on the bone marrow registry, Lizzie could have lived, Garza said. To register, potential donors can request a kit from the Be The Match website to be mailed to their house and send back a swab of their cheek to be analyzed, all for free, she said.
“She wanted people to consider becoming bone marrow donors,” Susan said. “There are so many kids that need it so badly.”