When Andrea Whitsett’s son Patrick was sick, she pleaded with strangers to save his life.
She pleaded at folding tables set up at events, at his Chicago school, anywhere she could tell people about stem cells and how her son needed them.
His leukemia had returned. The doctors had done what they could and her only option, they told her, was to ask strangers to swab their cheeks in hopes they were a match for her son. If they could find a donor, they could try a bone-marrow transplant, a procedure also called a stem cell transplant.
“They tell you, I’ve done all I can do with the medicine,” Whitsett recalled. “This is the only thing we can do to try and help keep him here on earth.”
Despite countless drives and asking anyone who would listen, no match was found. Her son died in 2015.
When Whitsett asked people to swab their cheek and see if they’d be a donor match, most weren’t familiar with stem cells. Some said they would pray for her, but donating sounded like it would hurt. Some simply said an outright no.
Years later, Whitsett is still grieving, and preparing to fight a battle she knows well but hopes will have a different outcome this time. She is facing her own diagnosis of leukemia and possibly a future transplant need of her own.
Still, she says she is fighting, for herself, and for other children who are hurting. And for their parents, who she knows are helpless to ease their pain.
She hosts drives to inform people about stem cell donation, taking swabs. She encourages others whose children are sick. When her son was undergoing chemotherapy, she walked more families than she can remember to the oncology floor of Comer Children’s Hospital, introducing them to the cancer ward and encouraging them.
“It’s the worst pain you can feel,” she said, “to know now, ‘Mommy can’t give you cough syrup, I can’t do anything for you.’”
She tells everyone she can how more African American donors are needed; right now, according to DKMS, the world’s largest blood stem cell donor center, African Americans have only a 23 percent chance of finding a match because minorities are so underrepresented in the global donor pool.
Most people with blood-related illnesses rely on someone outside their family — 70% have donors that are not relatives. Anyone between the ages of 18 and 55 who is in good health can join the donor pool, starting with a cheek swab. People can find out more at the website for DKMS, which was founded in 1991 by Peter Harf, whose wife Mechtild Harf could not find a bone marrow donor for leukemia.
Whitsett has reached out to other parents who are sitting where she once sat. That’s how she became close with the parents of Nyiah Young, a 15-year-old in Frankfort living with sickle cell disease and hoping a matching stem cell donor could change her life. The two families have held drives together, and before the pandemic would get together regularly.
Whitsett might not have been able to save her son. But maybe she can help save Nyiah.
“Somebody asked me, ‘Why are you still doing this? It didn’t help save your son,’” she said. “I said no. They did everything they could to help save my son. … People of the world were the ones who were supposed to help save my son.”
When her son was in the hospital, he kept telling his mother he just wanted to be normal. And for two years, he was. From 2013 to 2014, he was in remission, attending classes at Dunbar Vocational High School.
But in the spring of 2015, after a regular checkup with his oncologist, “He got the call that the cancer was back,” she said.
Doctors had told the family that if the cancer returned, he would need a bone-marrow transplant.
“That’s something a mother doesn’t want to hear,” she said.
They were shaken, but optimistic. After all, he had two sisters, one just 10 months younger. Surely one would be a match.
But neither was. Nor was anyone in their family, or the many family members and friends eager to try to help.
That’s when she began begging strangers.
“To have to go around and beg, and that’s literally what you have to do, you have to beg,” she said. “A lack of knowledge made people stand back and say, ‘I don’t want to do that,’ or, ‘I can’t do that, that’s going to hurt.’ That’s the first thing that you hear.”
Meanwhile, Patrick’s hospital visits returned. And his life became less normal.
Patrick wanted to be a clothes designer; in his hospital room, nurses would joke about the constant HGTV. He’d tell them how his mother raised him and his sisters by herself, and she deserved a gorgeously designed house. “So one day,” he’d tell the nurses, “I’m going to give my mama those houses.”
He realized a new purpose in the children’s cancer ward, his mother said. He wanted to give out boxing gloves, to remind children to fight. He wanted to say to them, “You’ve got to give it everything.” He envisioned giving out boxing bags to help them realize, “If I could beat this up, I could beat this cancer.”
Patrick died the same year that his cancer returned.
These days, his mother continues his passion, encouraging families, sometimes talking to people on the phone as a life-size cutout of him watches her from across the room.
She channels him when she talks to parents like the Youngs. She channeled him recently when she talked to a doctor who is Asian and teared up as she said that in their community, also, donors are limited. She channels him with her own cancer diagnosis, when she heard that word she never wanted to hear again — “leukemia” — days before her 53rd birthday.
And she channels him when she sees Nyiah.
Nyiah is an active, bubbly teenager who coaches cheer and volunteers. Sometimes, because of her sickle cell disease, she is too tired to attend the things she wants. She has become professional at educating people about what it means for her life.
“I’ll be changing for gym, and somebody will notice my port and say, ‘What’s that thing on your chest?’ and I’ll explain that it’s for sickle cell,” she said.
Her mother, Danielle Young, said she was familiar with sickle cell and knew it ran in her family. But her husband’s family was not, and the way they found out it ran in his family was when doctors rushed into her postpartum room to tell her the diagnosis of her newborn baby.
“It was a big surprise,” she said.
As a toddler, Nyiah had a stroke. Doctors suggested they join the registry, where a stem cell transplant could give her hope at a normal life.
That was 11 years ago.
“We never thought we would be on the registry for 11 years,” said her mother, Danielle.
Nyiah doesn’t remember a time before waiting for a donor. “I’ve always been on the registry,” she said.
When she was 12, a donor matched. The family was elated. They were planning the procedure. But the donor backed out.
“That person didn’t really realize that they could have made a big difference in her life,” Danielle said.
So again, they wait. They search for future colleges and check health care providers in the region, seeing if it’s possible to get the care she needs. They check things like altitude when they travel, knowing it could affect her. They continue to plan around the extra factors in her life as they hope for a future where those are gone.
Nyiah remains at an extra risk of stroke, and has problems with her kidneys and vision as a result of the treatment. She has monthly blood exchange procedures.
“It’s not an easy road she has,” Danielle said.
All this is why Whitsett keeps telling people that education can save a life. That their willingness to get a cheek swab might save someone’s child. She knows you never know what tomorrow might bring. Her son’s death started with a cough.
She knows, she said, that sometimes Nyiah feels tired. She tells her to give it everything she’s got.
“When you feel one day that you can’t do it, you call out to Patrick,” she told Nyiah. “I promise you he’s up there with God, and he’s going to tap on God’s hand and ask … to give you the strength that you need.”
What an amazing story that is it’s terrible about why her son isn’t around anymore bless his soul but she continues to fight and tries to educate others she’s a beautiful and strong woman bless her and all those that she’s able to help