Bay Area journalist Kevin Weston’s fight against rare cancer

 Kevin Weston doesn’t remember doctors saying he had two weeks to live. He doesn’t remember his 44th birthday. He doesn’t remember his own wedding, though he says he’s seen the photos: Weston in a white hospital gown, eyes closed, with an extremely swollen face. In some photos he has tubes and monitors attached to his body. And in one photo, he has a white hospital bracelet on his wrist, and he’s holding his new wife’s hand.

In August, Weston was diagnosed with an extremely rare form of leukemia known as T-cell Prolymphocytic Leukemia, or “T-PLL.” The leukemia compromised his immune system and became compounded by an infection to his throat. Weston spent more than two weeks in a coma and more than a month in the hospital, and to this day he is still visiting medical facilities several times a week in effort to recover fully.

Weston, a longtime Bay Area-based journalist, recent recipient of Stanford’s John Knight Fellowship, and the father of a 19 month-old child, sat in a dressing room at Oakland’s Yoshi’s Jazz Club Monday night, moments before being honored at the Black Media Appreciation Night. He was set to receive an award for his work with young people in a publication called Youthoutlook, a subsidiary of the San Francisco based New America Media, where Weston held was once the Director of New Media and Youth Communications.

He was backstage, in the dressing room’s only chair, his dreadlocks resting on his shoulders, as he spoke about his illness, “I didn’t get to experience the whole, ‘oh, you’re about to die’ thing,” Weston said, looking back at his time in intensive care. “I was asleep.”

But Weston’s wife, Lateefah Simon, remembers it all.

Simon met Weston while she was working at an organization called “Back On Track,” a program that teaches incarcerated individuals to tell their own stories, a cause that Simon says both she and Weston champion. The two crossed paths at conferences, and collaborated on events; eventually, a romantic relationship bloomed and in April of 2011 their daughter Lelah was born.
Weston, who studied broadcast journalism and political science at San Francisco State University, became a youth organizer and workshop leader at Berkeley High through a nonprofit organization called Youth Together, where he worked for two years. He eventually joined New America Media, where he spent most of his tenure working as the editor-in-chief of Youthoutlook. Weston has come a long way since his start as a paperboy for the Oakland Tribune.  This past summer, in fact, he founded The Oakland Globe, an online media publication, with an office on 14th and Broadway, the heart of Oakland’s downtown.

And then, one day in August, his throat began to itch.

“It was a whirlwind to come in with a sore throat, and then find out that he has the world’s rarest cancer,” Simon said in a phone conversation early Monday morning, as she sat in a hospital during one of Weston’s routine visits.

Although it turns out that T-PLL is not officially listed as the rarest cancer in the world, doctors told Simon that only ten people in the United States are diagnosed with this cancer annually.

Weston was diagnosed on August 27, three days before his birthday. The day after his birthday, Simon found out that the couple’s house was burglarized while they were seeking medical attention, all of the family’s computers were stolen.

It was during that first week, in the Kaiser Hospital in Santa Clara, when doctors told Simon how severe Weston’s disease was. They suggested she call loved ones to come see him. They indicated this might be their last chance.

Simon did more than that. She organized friends on social networks. She sent out text messages to be forwarded around the community. And under circumstances neither had ever imagined, she put together their wedding.

Earlier this year, the couple had planned on getting a marriage license on Weston’s birthday. There was no date set for a wedding celebration; they just liked the idea of handling the paperwork on August 30.

But when his birthday came, Weston was on life support.

So Simon put together the best wedding she could.  “We got married in the ICU,” she said.
Simon relied on her community. “Vanessa Marlin, A local flower shop owner, brought wedding flowers, a bouquet and a lapel for him,” Simon said.
That was just the start of the support.

As Weston lay comatose, family and friends poured into the hospital room in Silicon Valley. A prayer vigil was held at The Way Christian Center, the church Simon regularly attends in Berkeley.

Friends brought everything from underwear to coloring books, said Simon.

Steve Ngo, who sits on the San Francisco City College board of trustees, brought 20 Vietnamese sandwiches for the people who work in the intensive care unit. Raj Jayadev, executive director at Silicon Valley De-Bug, visited the family two or three times a week to bring food. And a longtime friend of Simon’s got on a plane from NY just to bring Weston a new laptop.

Simon also set up a Paypal fund for those who wished to help the family with medical bills.

“We’ve raised over $17,000 since Kevin got sick,” said Simon, who now has the task of facing a portion of the estimated $630,000 dollar bill for Weston’s next operation, and actually finding a matching donor for the impending bone marrow transplant for Weston–both of which Kaiser Permanente will help with, she said.

“We’re extremely lucky we have insurance,” said Simon. During the first month of Weston’s hospital stay, the medical bills totaled $430,000, Simon said.  Kaiser covered 98% of the bill, she said.

Hospitalization for patients who have received bone marrow transplants usually lasts for a month, said Simon. “The body has to go through intense radiation and chemo to kill all the cancer cells,” said Simon, who added that she now spends one to two hours per day reading about cancer. “Then they put the donor’s marrow inside the patient, and wait a month to see it if takes.”
If the treatment doesn’t “take,” there is a possibility of a backlash leading to a potentially fatal infection, Simon said. Doctors commonly ask patients to spend two months undergoing frequent checkups and wearing a special facemask to protect them from germs as their immune system is restored, she said.
“We don’t know how we’re going to do it,” Simon said. “But we will.”

The award show was Weston’s first public appearance since falling ill. “I don’t really feel that different,” he said as he prepped to take the stage and accept his award. “Only thing that really feels different is, because I was in the hospital so long, it took me a while just to feel cool standing up, or walking– just doing regular stuff, because I wasn’t used to doing it.”

People got word that Weston was backstage, and began to visit his dressing room. Weston briefly explained his medical condition—“I have this thing, I can’t shake people’s hands”—as he greeted friends and fellow journalists with fist pounds instead.

“I was psyched ‘cause it’s Mr. Ratcliff’s birthday,” said Weston, as he talked about receiving an invitation to the event. “Our elders should be honored.” Paying homage to Willie Ratcliff, owner of the San Francisco Bay View Newspaper, was a greater motivation to attend this event than receiving his own award, said Weston.

Weston’s father introduced him to Ratcliff when Weston was a teen; it was one of the few times he ever saw his absentee father, Weston said. But he said that one interaction changed his life for the better.
Kevin Epps, a San Francisco based filmmaker and longtime friend of Weston, said that it was during Weston’s time at the San Francisco Bay View that the two began their friendship.

“Kevin Weston is a friend and a brother to me, and in addition to that he’s an institution in his own right,” said Epps, who was to hand Weston his award. “He’s an unsung hero that has been essential to the growth and development of young journalists’ ability to tell the stories of the community we come from.”

As Weston took to the stage, the audience in the dimly lit jazz club erupted with applause.   He accepted his award, and then turned to address the audience, where his wife sat in the front row. Within the first two sentences of his speech, he began to cry. He wiped his eyes, and then joked: “I won’t be the only one to cry tonight.” His voice shaking with emotion, Weston asked someone in the audience to make Mr. Ratcliff cry, as well, sometime before the night was done.

Then Weston took a breath. “My wife has been a tremendous support system,” Weston said. He thanked those who had been such a help to him and his family, and asked people to remember that community institutions sometimes deserve the same support. “When KPOO is in trouble, or when the Bay View is in trouble, that’s how we’re supposed to act,” Weston said. “You’re supposed to show up.”