||Latoya Headley (seated) and mom Darlene
An MRI revealed a swelling in the spinal cord. Something was blocking the signals that tell the legs to move. “I never imagined,” she says, “that there would be a tumor in my spine.”
Diagnosis: glioblastoma multiforme (GBM), an aggressive cancer. The neurosurgeon removed as much as he could. The day after her 23rd birthday, Latoya started chemotherapy and radiation. But the tumor came back.
“I got scared when they said, ‘Latoya cannot do another surgery,’” says Headley-Johnson. “I thought, ‘What can we do, where can we go?’”
She didn’t give up. When a coworker suggested a clinical trial, she got on the computer, found the trials at NIH and called Latoya’s primary care physician.
Her timing was perfect.
“I was feeling hopeless,” Headley-Johnson continues, “but the doctor said, ‘Can you go to NIH on Monday?’ She referred Latoya in.”
That was how, in January 2008, Latoya began participating in a phase I clinical trial for recurring GBM tumors.
“The trial,” explains Dr. Howard Fine, Neuro-Oncology Branch chief and NCI senior investigator, “is testing a new drug, Enzastaurin, developed as anti-angiogenesis.”
Angiogenesis is the body’s process of making new blood vessels. “Tumors learn to make chemicals to induce new blood vessel growth,” says Fine. “Enzastaurin works by targeting the blood vessels that feed the tumors. The drug turns off the angiogenesis and starves them out.”
|Headley-Johnson shows the back of her daughter Latoya’s T-shirt design.
The trial combines the new drug with another form of chemotherapy, to see if the two together will be more effective.
The gliomas, says Fine, occur most commonly in the brain, but occasionally in the spine, where they can cause severe disability, similar to a spinal cord injury, but progressive. This means that the disease advances from bad to worse.
“When Latoya was first diagnosed,” he recalls, “she came to us after her tumor had recurred. Most patients in this situation have a very short life expectancy. And here she is a year later...
“There’s this thing called hope,” he continues, “if nothing else, for quality of life.”
Latoya is followed up every month, when “they thoroughly check everything,” she says, “give you a report card, go over any good outcomes. They take the time.”
Her mom says, “They’re protecting the patient. It’s not just a focus on getting somebody in here and being an experiment. They give you a choice.” In the CC, “the services are great. It’s so comforting here.”
As for the new drug, Latoya says, “I’ve never had bad side effects, and my hair is still growing...Enzastaurin is for brain tumors. They were excited to know it’s working in the spine.”
She’s been “off her legs” for over a year, but now she can stand free of her physical therapy (PT) walker long enough to clap her hands.
“A good response to treatment,” says nurse-practitioner Irene Stroud.
Before she got sick, Latoya, one of five siblings, was already out on her own. She had completed a few semesters of college when her father was tragically killed in an auto accident. After that, she left school to work as an administrative assistant. She now shares an apartment with her younger sister.
“I have some independence,” Latoya says. And creativity, too.
“I believe in a higher power,” she says. “Along this journey, I came across a scripture on salvation and healing and the Greek word sozo [literally, ‘rescue’ or ‘save’] translates that. It’s something my heart desired throughout this process. So I decided to design a T-shirt for encouragement and awareness.”
Her mom, a freelance graphic artist, encouraged her to draw when she was little. Latoya now uses Internet templates, but the overall design idea is hers. “At PT,” she says, “people who had an accident have to learn how to talk. So I would pity-pot some days. I couldn’t walk, but they couldn’t talk! It would make me appreciate what I had.”
Her T-shirt reads SOZO; in back, it shows a spinal column with a band-aid.
“I really mean everything I say; I’ve experienced a lot,” says Latoya, who turned 24 last October. “Even if you don’t have a tumor, you can’t have poor spirits when you’re fighting something. I’ve heard people’s struggles and their stories. They’ve encouraged me. Now I want to encourage everybody else.”
For T-shirt inquiries, email firstname.lastname@example.org or visit the Bldg. 10 or Bldg. 31 R&W gift shops, which stock it.