Earlier this year, Kyle Owens, an African-American and a Calabasas resident, started feeling fatigue after every basketball game he played as a forward with his University of California, Riverside teammates.
Now, the beloved teammate, son and older brother, who graduated from Crespi Carmelite High School in Encino, needs a blood stem cell transplant to cure his cancer.
Unfortunately, Owens doesn’t have a full match in his family, or a match on the NMDP registry, formerly known as National Marrow Donor Program/Be The Match.
The number of African Americans in the NMDP registry needs to be much bigger.
In mid-November, Westhills Baseball, a non-profit organization where he played baseball as a youngster, held a registry in the hope of finding a match for him, but it proved futile.
Registry representatives say Westhills Baseball’s registry event garnered additional potential donors who could eventually help someone else with cancer.
The American Cancer Society estimated that this year in the U.S. about 6,550 new cases of ALL arose. Of those, 3,590 were men and 2,960 were women. And also this year about 1,330 deaths occurred, including 640 men and 690 women.
ALL is not a common cancer, accounting for less than half of 1% of all cancer in the country. The average person’s lifetime risk of getting ALL is about 1 in 1,000. The risk is slightly higher in males than in females, and higher in White people than in African Americans.
Hispanic, Asian and African Americans have less than a 50% chance of finding a fully matched donor on the NMDP registry, a leader in cell therapy.
“The more people we can get to join the registry, the more likely it’ll be that patients can find matching donors,” said Erica Sevilla, a NMDP spokesperson.
Sevilla explained that researchers can trace a person’s human leukocyte antigen (HLA) gene type and its markers, functions of their immune system. “That’s what we try to match,” she said.
Sevilla pointed out that people are becoming significantly more ethnically diverse, which is why it is critical that people of all backgrounds and ethnicities swab their cheek and join the registry — because you never know when somebody’s going to get leukemia or lymphoma.
There are more than 75 different diseases or blood cancers that can be treated or cured with a blood stem cell transplant. In a blood stem cell transplant, a donor’s healthy cells replace a patient’s cancerous cells.
“You inherit half of your HLA type from your mom and half from your dad, so siblings will have a 25 percent chance of matching each other,” Sevilla said. “Some people will find a match in their family, but 70% of patients need an unrelated donor.”
Keith Owens, Kyle’s dad, said his son was experiencing symptoms of fatigue, night sweats and now-and-again fevers several weeks before he was diagnosed.
“They were symptomatic of the leukemia, but they’re also symptoms of just a regular flu,” the elder Owens said.
Owens said Kyle resisted being medically tested because he didn’t want to miss any games, so he powered his way through as best he could. But finally he went to the emergency room with the university’s team trainer.
“The ER doctor saw high evidence of ‘blast cells’ (immature blood cells) which is definitely something that’s typically common with leukemia,” Keith Owens said.
Kyle, who stands 6 feet 8 inches, began his college years studying communications at the University of Montana where he graduated after three years before transferring to U.C. Riverside where he earned his MBA.
The 24-year-old has been admitted to several hospitals over the past months where he received different types of chemotherapy and immunotherapy infusions not knowing how his dreams of being a professional basketball player will pan out.
A tumor on his spine has now caused him to lose some function in his lower body, although his body strength has been slowly improving over the past few weeks.
“He cannot walk on his own,” his father said. “He uses a walker or crutches.”
Recently, Kyle was staying at a rehab facility and was told his kidneys weren’t cleaning the waste from his system.
Once again it was back and forth to different hospitals on an up-and-down roller coaster for the entire family.
“So, this was probably early November he went to the City of Hope in Duarte and CAR T-cell therapy was next up, but we had to get approval from the insurance company,” Keith Owens said. CAR T-cell therapy — or Chimeric Antigen Receptor T-cell therapy — is a treatment in which a patient’s own T cells are genetically modified in a lab to recognize and attack cancer cells.
In the meantime, Kyle’s kidney numbers weren’t looking good.
“It’s indicative of the leukemia that it’s being pretty aggressive in and around his kidneys,” his dad said. “So again, they treated him with another regiment of chemo.”
Kyle spent Thanksgiving in the hospital.
He returned home on Dec. 1 and his kidney numbers were back to normal.
Keith Owens described Kyle as a young man who is a team player and has always made friends easily.
His family remains hopeful that Kyle will soon find a matching donor — someone who wants to be a team player.
The National Marrow Donor Program has set up a webpage to spread awareness for Kyle’s donor search and to encourage others to register for the NMDP registry at nmdp.org/curekyle.