AUSTIN (KXAN) — The Jansson family is fighting to save their daughter.
“I think the right word would probably be ‘crazy,'” Adeline Jansson said.
She and her family live in Austin and started their year like the rest of us, facing uncertainty because of the COVID-19 pandemic.
“It was really kinda freaking me out cause you know COVID is around and we’re being quarantined, so I thought I had COVID, and then I thought I had stomach cancer,” Adeline said.
A fever turned into tests, and then a hospital visit.
13-year-old Adeline Jansson has leukemia. Doctors diagnosed her with the rare form of the blood cancer “acute lymphoblastic leukemia” in April.
The first person they looked to as a possible donor was her brother Crawford, but unfortunately, he wasn’t a match. So they continued to search, and found hope an hour south of where they live.
Be The Match
A cure exists for people with life-threatening blood cancers like Adeline’s, but getting it takes a willingness from others.
Her family is working with GenCure, a medical laboratory in San Antonio. The team hopes to add potential donors to the national database Be The Match Registry®.
More donors mean more chances to find stem cell or bone marrow transplants. Patients like Adeline need one. She must find a matching donor who has the same genetic markers of her immune system. Unfortunately, she does not have a match in her family, so her only hope lies in an unrelated donor from the registry.
Right now, that database has taken a huge hit from the pandemic.
“COVID has hurt our registry tremendously. We normally recruit close to 500 people a month just within Austin and Central Texas. I’m lucky right now if I get close to 20 people to join the registry,” Brenda Garza said.
Garza is the registry’s community engagement representative for Austin and Central Texas. She’s seen a decline in recruits, especially because they can’t hold big events, which sometimes draw hundreds to more than a thousand people.
At their last event before COVID-19, on March 10 at the University of Texas at San Antonio, they recruited close to 1,500 people. Those large numbers are now gone but still needed, because the chances of you being a potential donor are 1 in 500 swab kits. That’s a significant loss.
“We lost another cancer patient like months ago just because of the fact that we couldn’t find the match,” Garza said. “This is very hard because I get to know the cancer patients. I work with them. I work with their families and knowing that I do not have places I can go and recruit, I know I’m not bringing the hope I could bring to them. So it’s very sad to see that registries have been hurt the way it has been because of COVID.”
Difficulties finding donors
There’s also a fear to join.
“That’s the hardest part. We all have the cure, just we don’t know that and we’re afraid of being a part of the registry,” Garza said. “There is a hesitation but also a lot of misinformation. For example, people believe that donating stem cells is painful. Truth is that donating stem cells most of the time, up to 75%, it’s like donating plasma. So we just need your arms, good veins, you come to the center, stay there with us for a few hours and we collect the stem cells from your blood, from your bloodstream.”
A bone marrow surgery for extreme cases of blood cancer is less than 25%, Garza said.
Ethnicity is another factor. The process works better if you’re the same ethnicity as the cancer patient, and the registry leans predominantly European, meaning more Caucasians, Garza said. They have more than a 70% chance to find a match. But, if you’re Hispanic, that percentage is under 50%, and if you’re African-American, it’s even worse: under 23%.
Garza’s biggest concern is minorities.
Said Garza: “If we are already in a disadvantage on the registry and we don’t have minorities joining the registry, who’s gonna be there to help that cancer patient who needs a transplant?”
Swab Kits and Solutions
Although the pandemic has to a pause to large numbers of swab kit submissions, there are still ways to contribute: individually.
The Janssons family has been pretty much been living at home since March, unless it’s a trip to the hospital for Adeline. In the meantime, their home is a one-stop-shop for family, friends and strangers to swab their cheeks for the cause.
The family places the swab kits outside their home, invite people to complete the kits in the driveway (from a distance), and then have the individuals drop them in the mailbox to be sent to Be The Match. So far, they’ve had more than 30 participants.
“It means a lot. Before I had cancer, I thought, yeah I have friends and family…. seeing all of the support that’s flooded through… it’s being really cool to see how much support we have,” Adeline said.
“To be served in a way that we have and to be extended care and love from friends, family, sometimes complete strangers has been very humbling. We’ve had to learn how to say, ‘yes, you know, you can do that for me.’ I think a lot of the times you don’t want to say that. ‘No, I can handle it myself.’ But, you know, you have to let people serve you in the way they will and the outpouring of love from the community has been great,” father Todd Jansson said.
There are also other means to join. You can text “Adeline” to 61474, and you’ll receive a link. Click on that, sign up and join the registry. Once you fill out the form, they’ll send you a pre-paid swab kit in the mail. You follow the instructions to swab, then send the kit back in the same envelope. No postage needed. Takes roughly 5 minutes, the family said.
There’s also online. If you’re age 18-44 and in general good health, you can join the registry to support Adeline and others on Be A Match’s website. For every 430 people who join, one will go on to donate marrow or stem cells to a patient in need, the registry said.
If you’re interested to learn more about the cure, you can visit Be The Match’s main website or call 1 (800) MARROW-2. You can contribute by becoming a member of the registry, a financial contributor, or a volunteer.