University of Memphis freshman band member Javon can tell you about his years and years of treatment for acute lymphoblastic leukemia (ALL). He can tell you about his two relapses — including one that was revealed on the very day he was to finish chemotherapy.
He can tell you about his bone-marrow transplant, after which he slept for days then woke up temporarily without his memory — asking his mom, as she hugged him, “Who are you?”
He can tell you about friends made and friends lost among his fellow patients, and the time he started hiding his medicine because he was “sad and depressed,” but also because “those were some big, ol’ pills.”
But perhaps the most telling moment of this 18-year-old St. Jude Children’s Research Hospital cancer survivor’s tale comes when he says, “Two years ago, I literally learned how to ride a bike.”
People laugh when he tells them. They naturally wonder: How are you a teenager and just learned how to ride a bike?
That’s when he tells them about his childhood, the one he really didn’t have. The one cancer stole.
Jakayla, 13, can relate. She was a familiar sight in the halls of St. Jude as a patient sibling — Javon’s little sister — before she, too, was diagnosed with ALL.
She can also tell you what it’s like to relapse. She can tell you about her own bone-marrow transplant. And she, like Javon, can tell you about the difficulty relating to school mates and others whose childhoods weren’t marred by a catastrophic disease.
“I couldn’t really tell people how I feel about having cancer,” she says. “It’s hard for people.”
This is a girl, after all, who attended her St. Jude kindergarten graduation via Skype from the bone marrow transplant floor.
It helps, then, to have somebody close who really understands. Somebody who’s been there, like a big brother.
Or a mother. Yes — her, too.
Mom and her babies
Some 25 years before Lisa was a mom with two children simultaneously undergoing chemotherapy for ALL, she was a St. Jude patient with the same disease.
She relapsed, too. She made dear friends only to lose them. And she remembers seeing other patients who had lost limbs, and asking her own mom, “Am I going to get my leg cut off, or my arm?”
She can tell you all that, and also how she coped, post-cancer:
“I just put it in the closet and never thought about it.”
The strategy worked until it didn’t. Until, she says, “my baby” was diagnosed.
That was Javon, in 2003, at age 2.
Five years later, 2-year-old Jakayla was diagnosed.
Mother. Son. Daughter.
In fact, the family’s connection with ALL — and with St. Jude — is deeper still. Lisa had a relative who was successfully treated at St. Jude for ALL in the late 1990s, and another relative was an early 1960s ALL patient who did not survive.
The family’s history spans nearly the hospital’s history, from those early days when the survival rate for ALL was 4 percent. Today it’s 94 percent.
The day Michelle Obama visited St. Jude
What are your most vivid childhood memories? Ballgames and dance recitals? School days and beach vacations? Secrets shared with best friends?
Imagine if nearly all of your childhood memories took place in a hospital. Imagine if your best friends all had cancer.
That’s especially the case for Javon, whose treatment was the longest and most fraught of the family. He didn’t attend a traditional school until sixth grade; before that he was educated at St. Jude, which has a K-12 school program.
“I made so many friends I lost count,” Javon says of his St. Jude childhood. “We’d pretty much talk about everything” — from their low ANCs (absolute neutrophil count, a reflection of the body’s ability to fight infections) to their next chemo treatments to why they had to wear masks. “We’d pretty much talk about medical stuff at a very young age.
“But, at the same time, we were goofing around. Have you seen Power Rangers?
“We had a lot of fun.”
Javon smiles — an unmistakable after-effect of all his years at St. Jude. So it is for the rest of the family. “We’ll laugh about it,” Lisa says. “We’ll basically talk about the good times we had.”
That’s by design at a hospital where treatment allows kids to be kids, where laughter is medicine, too. St. Jude is doctors and nurses and therapists, but some of the latter play guitar and sing. St. Jude is transplants and proton therapy and clinical trials, but also school and teen formal and hanging out with celebrities.
“Oh, celebrities,” Lisa says — and there’s that family smile again.
The best was then-First Lady Michelle Obama, who visited St. Jude in 2014.
“She gave me some candy and cookies,” says Jakayla.
“My favorite, hands downs,” Javon says. “She was so welcoming and nice. Oh, she was the best.”
For mom, it almost made up for her greatest missed opportunity — sleeping through a visit by St. Jude founder Danny Thomas during her own patient days in the mid-1980s.
“The Benadryl had knocked me out,” she says. “My mom even said he stood over me. And I’m like, ‘Wow. And why didn’t you wake me up?’”
They have the other kind of stories, too, of course. A happy hospital is still a hospital. When asked if he ever worried he might not survive, Javon tells this story:
“That moment was when I had my transplant. It was like a horror story, slash, a good story. I’ll never forget this night. It was thunder-storming so bad that the lights went out. Then all the transplant patients like me were moved to the hallway. They had to almost postpone my transplant, because the lights went out so bad.
“After the lights came back on, I had to go to my transplant. They had to put the cells into my Hickman line. The lights almost went right back off. I was panicking. My heart rate was going high. Everybody thought I was going into shock, and I was panicking so bad.”
After the transplant, Javon says, he blacked out. In his admittedly exaggerated version of events, he was asleep for probably two weeks. “Completely normal sleep,” he says, “for two weeks.”
When he awoke, he didn’t recognize his mom, didn’t know where he was, and seemed to have forgotten he had cancer.
Javon says it was another week before “I caught up with my memory.”
There’s amazement in his voice as he speaks. He seems to marvel at his own stories, as if they must have happened to someone else entirely, or maybe to a character in a movie.
At one point, he stops himself and says, “Wow. I’ve been through hell and back. Now that I think about it, I’ve been through a lot as a child.”
In his first year of college, Javon plays trombone in the marching band. He says life is “awesome.”
Surviving together, thriving together
Jakayla is an eighth grader. She’s soft-spoken, but maybe she’d just rather sing than talk. “I’m in the school choir,” she says.
Lisa is a proud mom, though she makes no claim on the music her kids are putting out into the world. “I don’t know where they get it from,” she says. “They didn’t get it from me.”
They did get her strength and perseverance, it seems, and a sense of family that does not quit. They’re tight. You can tell by the way they interact, the way they talk about each other. Javon says Jakayla is “a fun spirit, and she’s like a little diva.”
Lisa says of her daughter: “She’s more open now than she was. She’s more energetic now. The choir thing, I never thought she’d be doing. She’s been in competition. We went to Florida, she sang in front of all those people. I never thought she would have done that. She’s started coming out more. She was very shy.”
Then there’s Javon’s bond with his mom. He calls her every day, though campus is just 20 miles from home. And so many of his stories involve her, like the one about relapsing just as chemotherapy was ending:
“Younger me thought I was going to go back to being a normal little boy,” Javon says. “I noticed my mom was crying, but I thought she was crying for joy. But she was trying to explain to me that I had relapsed.
“Younger me was like, ‘I don’t care, Mama, I’m here with you.’ That’s what I remember saying — ‘I don’t care, Mama, I’m here with you.’”
They’re still here, all of them.
Lisa. Javon. Jakayla.
Mother. Son. Daughter.
A St. Jude success story, times three.