Ben Underwood's braids are long gone.
A thick scar scissors across the top of his bald head, where doctors went in to carve out the cancer in his sinus cavity. A tube for his many medicines is implanted in his upper chest. He slumps in his chair in a Kaiser Permanente waiting room, tired even though he just got out of bed a couple of hours earlier.
Ben's world has flipped. A year ago, it was all about interviews and celebrity and travel. Now, it's all about chemotherapy and blood tests and hospitals.
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But like just about everything else in his remarkable life, Ben insists the cancer thing is no big deal.
"I'm just gonna kick back and relax," the Elk Grove teenager said of his latest setback.
He lost both of his eyes when he was 3 years old to a cancer called retinoblastoma and finds his way in the world in a most extraordinary manner.
By clicking his tongue and creating sound waves, he can identify objects in his path and get around safely. Using the technique known as echolocation, along with his keen sense of hearing, he is able to play basketball, skate, ride a bike, tap dance, swim and wrestle, among other things. He's a whiz at computer games. To the chagrin of some of the adults in his life, he refuses to carry a white cane that would identify him as blind.
Ben's navigational skills, commonly used by bats and dolphins but rarely documented in humans, amaze his doctors and teachers, but not his mother, Aquanetta Gordon.
"To me, he's just Ben," Gordon said.
During the past year, Ben met Hollywood stars, traveled the country and the world to talk about his life, and was featured dozens of times on national television.
He spoke with musician Stevie Wonder, was featured in People magazine, became an Internet sensation and made an appearance on Oprah Winfrey's show.
No big deal, he said with a shrug.
"She's just like any other older lady, only she's rich," he said of Winfrey.
'My head hurt'
The first symptoms of his latest medical saga surfaced while he and his mother were on a plane returning from Japan, where he is the subject of a film documentary.
"My head hurt so bad," he recalled.
In May, doctors successfully removed from his sinus cavity a large tumor that was spreading toward his brain. For the next year, he'll have to endure an intense course of chemotherapy.
His doctor said it is unclear whether Ben's cancer is a recurrence of retinoblastoma from his childhood or a different form of the disease caused by the radiation he had as a toddler.
"We're still not completely sure," Kaiser Permanente pediatric oncologist Kent Jolly said. "It's an awkward situation that means we have to design treatment for both possibilities."
Every three weeks, Ben gets alternating chemotherapy infusions.
They sap his energy and sometimes make him sick to his stomach. On his most recent trip to Kaiser, he stepped on a scale and was surprised to see that he had lost six pounds since his last appointment. Because the chemotherapy medicines suppress his body's natural immune system, Ben is at high risk of infections. An inflammation on his leg put him in the hospital for 17 days in July.
His future is uncertain.
"We think that his chances of being cured are not very good, but his case is too rare to give meaningful projections," Jolly said.
Because of a genetic defect that curbs his body's ability to fight off cancer, Ben will be at risk for developing various forms of the disease for the rest of his life, Jolly said.
But he has at least one great thing going for him, the doctor said.
"Most oncologists feel strongly that a positive attitude and good family support helps," Jolly said. "Ben has that in spades."
'This is our life'
Gordon, who works two jobs to pay the bills, is Ben's rock. She said she gets her strength from a higher power.
"It's terrible to see your kid sick and vomiting and weak," she said. "You feel so helpless. I feel like I'm going through it right along with him.
"But this is our life right now, and we've just got to make the best of it while we're still able to smile.
"I'm praying and I'm going to rejoice in his healing. My God says that Ben will live and will not die."
She looked over at Ben, who was smiling and talking in animated fashion about summer camp, Harry Potter and the joys of Kobe beef.
"When I was in Japan, I had the best steak ever," he said. "And I got addicted to tea!"
Recently, he spent time with all of his friends at Camp Okizu in the Sierra Nevada foothills. And he was excited to find out whether Harry Potter lives or dies.
"Those books are hecka good," said Ben, who reads in Braille.
In the meantime, he has to deal with chemotherapy. "Not fun," he said.
But no big deal.
"I really hope it doesn't make me nauseated this time, because I'm really not in the mood for that," Ben said.
Now, where did he put his Game Boy?