Twice Fought, Hard Won: A Struggle against Ocular Melanoma

Senior Jordan Sheade, diagnosed twice with ocular melanoma, overcomes his challenge and performs as key player. Photo by Kevin Tsukii.

By Akshay Agrawal, with additional reporting by Emily Vu

Some 13 years ago, senior Jordan Sheade stepped onto a soccer field; at the age of three, he was much younger than his teammates. As soon as he saw the ball, his mother recalled, he never let it go—that is, not until someone pushed him and took it from him.

“He wasn’t mad they pushed him, but he was mad they got that ball,” Jordan’s mother Judy Sheade said. “He went bam bam bam on the back of the guy’s head. And everybody looks, and then he goes, ‘Oh,’ and he goes over and he puts himself on time out at the baseball [diamond] … it was so sad to see him … with big tears rolling down, saying, ‘I’m so sorry, I didn’t mean to do that.’”

I’ve known Jordan since kindergarten, and he doesn’t like to lose. But if he does lose at something—whether it be a game of “horse” on the basketball court or a round of Super Smash Bros.—it’s not, of course, his fault. “The ball slipped,” he’ll say, or “I had an itch.”

But Jordan’s excuses are not really excuses—they’re jokes. Jordan has never been much of a complainer.

As Jordan plopped himself onto my couch a couple weeks back, things were just the way they’ve been the hundreds of times he’s been over. Well, almost. We weren’t together to play video games, but to talk about a topic of which I knew little about. I knew that Jordan wears—or at least should wear—sunglasses to protect his eyes. I knew that his right eye can’t see as well as it ought to. But I didn’t know much else; Jordan’s never complained about the dark spots that once resided in his right eye, that once ate away part of his iris.

The initial diagnosis
In April of 2008, back when Jordan was in eighth grade, Judy noticed a small dark fleck in Jordan’s bright blue iris; while she began to worry, Jordan brushed it off as if it was not a problem.

But the spot began to grow, so Judy arranged for Jordan to see doctors—five of them. The first four were unsure about the nature of the spot, but the last doctor recommended that Jordan see a specialist by the name of Dr. Devron H. Char in San Francisco. The spot alarmed Char. Something seemed wrong. The spot had been deforming Jordan’s iris, stretching out his pupil, which had lost its once-circular shape. Although uncertain, Char believed that Jordan’s right eye was afflicted with ocular melanoma—a rare type of cancer.

“I was, like, 12, so I didn’t really think too much of it,” Jordan said. “I was just like, ‘Oh cancer, I guess this is supposed to suck,’ but it didn’t really hurt or do anything at all.”

The following day, Char surgically removed the part of Jordan’s iris that contained the spot.

“I was just in shock,” Judy said. “It happened so fast … [Char] has a backlog of patients that come worldwide for months, and because it was that urgent, I was so afraid that it had to be really, really bad. And it was.”

The surgery was successful, although Jordan described the six week recovery process as painful. Severe discomfort lingered in his right eye for three weeks after the surgery. He could not open either of his eyes for the first three days; even after that, he experienced a sharp headache when he tried to focus his eyes on anything. But, Jordan noted an upside to his inability to use his eyes: he got an iPod.

Approximately two weeks after the procedure, Jordan was able to return to school, although due to his difficulty focusing his eyes, he stopped reading. Even today, if Jordan tries to read for over an hour, he experiences a serious headache.

Jordan returned to school with another major caveat—he would not be able to play sports and would have to sit out of the remainder of the school soccer season.

For Jordan, sitting on the sidelines and watching everyone else play “sucked.” This is a kid who would bounce around the house during playdates in kindergarten. When Jordan was over, my mom said, there was no way the the cushions would stay on the sofa.

For the majority of summer of 2008, Jordan had to stay out of the sun. When he decided to begin playing football that fall, during the beginning of his freshman year, he found that the surgery had detrimentally affected his abilities. His depth perception was off, and a constant glare impaired his vision.

“Starting a new sport like football was kind of scary,” Jordan said. “I could not catch as well as I used to be able to because I couldn’t really see the ball coming in.”

While playing sports in freshman year, Jordan had to take precautionary measures. During basketball season, he wore sports goggles to protect his eyes. He’s still supposed to wear them, but he doesn’t.

“They’re so nerdy,” Jordan said.

Bad news arrives
September 2009. The football season was just getting underway—Jordan was lined up to start as a running back for JV—when his mother noticed once again a small, dark speck in his right eye.

At the last six month checkpoint, Char noticed yet another spot, one unconnected to the original from eighth grade; nonetheless, he believed it to be a tumor and Jordan underwent surgery once again.

“It was more scary the second time,” Jordan said. “It was kind of disappointing. If it reoccurs, I’m going to have to lose my eye, so that’s really frustrating [and] scary. But, I guess if I lose one I [will] still have four-fifths of my vision, so it’s not so bad. But I still want both eyes.”

And so Jordan had to put up with the same boredom, same inactivity and same pain he had experienced approximately a year and half earlier. His ability to focus his eyes diminished again; throughout the entirety of sophomore year, he was unable to read a single chapter of his assigned reading. Dean of Students Michael Hicks, varsity football coach Jeff Mueller and World Literature teacher Jireh Tanabe were notified about his condition and helped him to adjust to his return to school.

Even though Char recommended that Jordan abstain from playing contact sports at least until the age of 21, three weeks after the surgery, Jordan was back at school and back on the football field.
“I’ve played sports all my life, and I’d be bored out of my mind if I didn’t,” Jordan said.

“[Jordan]’s never going to not smile and tell you he’s not fine. Jordan came back and [it] was full speed ahead from there. That’s just how he is—he’s got one speed, and it’s fast,” junior varsity football coach Nick Bonacorsi said. “He came back immediately, started producing and working hard.”

Similar to the first occurrence, Jordan’s surgery and the inactivity that went along with it exacted a toll on his football-playing abilities.

“When I got back, I wasn’t nearly as good,” Jordan said. “Didn’t start, hardly played, never really got to playing a whole game. I was a lot slower, too, because I didn’t do any exercise … I sucked at football sophomore year.”

Full throttle ahead
Junior year, however, was a different story. Without specific restrictions on his exposure to the sun, Jordan was able to practice with his football team extensively in the summer following sophomore year. During the 2010-2011 season, Jordan led the team with an impressive 658 rushing yards, 163 receiving yards and 24 points. For Jordan, junior year was “awesome.”

Per the advice of Char, Jordan wore a tinted football visor throughout the football season junior year in order to protect his eye—according to Judy, if poked hard enough, Jordan’s eye could pop.
Due to such health concerns, Judy initially opposed Jordan’s return to football, although she soon came to accept his decision.

“You know, he’s so much more brave than I am,” Judy said. “Here I am getting all emotional just because he got tackled, and he’s out there having a great time.”

A few games into the season, the referees decided that Jordan would not be allowed to wear the visor. Jordan decided to play anyway, accepting the ruling as part of the football regulations. Judy, however, believes that safety ought to be emphasized more in high school sports.

“If that’s such an issue, just give them all [visors] so nobody gets poked in the eye,” Judy said. “Schools don’t talk about [safety], nobody talks about that … ‘[The players are] just having fun, it’s not that serious, and no one’s making money,’ so it doesn’t get that much attention.”

According to Jordan, his teammates “thought it was really [cool] he got to wear a visor.” They were not fully aware of the toll that the ocular melanoma and surgeries had taken on his athletic ability and personal life.

Senior Eric Hu said that Jordan rarely discussed his ocular melanoma with those on the team.

“He just really didn’t talk about it that much,” Hu said. “We asked him, but usually he just joked around about it because, you know, it’s Jordan. He didn’t really want us to worry. [He] just kept us in a good mood.”

Jordan figures that at most, 30 people know that he was affected with ocular melanoma. Those who are unaware of his fight against cancer are often intrigued by his oblong pupil, and by the black splotch that bleeds over into the area where his iris once was.

“People would always be like, ‘Your eye is so cool. Why don’t you just do that to the other eye too? Make it even,’” Jordan said. “I just thank them [and] shrug it off. It’s not as cool as they think it is. I definitely wish it didn’t happen… I take it as a compliment because they notice something about me.”

According to Jordan, part of the reason that few people are aware of his struggle against ocular melanoma lies with their hesitance to approach him about it; he combats their reluctance with his trademark sense of humor.

“A lot of people, they’ll be nervous at first confronting me about my eye. They think it’s something I don’t like talking about, like I got beaten as a child and part of my eye just popped,” Jordan said. “Sometimes I’ll be too lazy to tell them the whole story. [I tell them], ‘Oh yeah, I was paintballing one day and I got hit with a black paintball and I wasn’t wearing goggles. That’s why there’s a black spot there.’”

Adapting to a new lifestyle

My friends and I have often joked about Jordan’s laziness—if he’s not not picking up his phone when we’re hanging out, chances are he’s sleeping. We didn’t know, however, that Jordan took to his habit of napping frequently after the periods of forced inactivity following his surgeries.

Jordan’s difficulty in focusing his eyes persists today and will persist into the future. Although his left eye has become dominant, he cannot engage in eye-intensive activities such as reading or watching television for more than an hour. Doing so gives him a severe headache, a “seven” on a scale from one to ten. Given the complications that arise when focusing his eyes, Jordan has turned to music for solace.

After being afflicted with ocular melanoma twice, Jordan is more conscious of his health. His diet consists of more whole grains, vegetables and health shakes, and less meats.

More than changing his physical habits, according to Judy, the experience has shaped him as a person.

“He’s a lot more humble,” Judy said. “He was so competitive, and so driven, that he never stopped to think that he wouldn’t win, and so to have something like that affect just you… brought him a realization that, ‘Oh, life could be really short.’ I think that kept him more social. I think that was good for him.”

Looking forward

While ocular melanoma has afflicted Jordan twice already, there remains a chance that it will resurface once again. Yet the odds are in his favor. According to the Sheade family, 2 percent of the population is afflicted with ocular melanoma, and only 2 percent of that group contracts it again; there is another 2 percent chance that he will be afflicted with it again. If he does, Jordan will have to lose his eye.

“There is no cure,” Judy said. “They can’t fully diagnose it, so they can never fully say where it came from and how you get [it]… and so he has to live with that for the rest of his life.”

But Jordan has refused to let the cancer dramatically change his life. He still plays sports; he still adventures.

“Jordan was such a trooper,” Judy said. “He helped me be not so scared. He wasn’t scared. He goes, ‘Mom what can I do? This is what I have, this is what I deal with and I’m just going to live every day like I would anyway. There’s nothing I want to do that I’m not already doing.’ I wanted him to quit football and basketball and everything… he goes, ‘No. This is my life. This is part of who I am, and why should I do that? Even if I die, at least I know I’m doing what I want to do.’”

Leave a Reply

Your email address will not be published. Required fields are marked *