Samuel Gonçalves had a rare tumor in his lung that was found in only 20 other people in the world over the last 50 years. Despite having only a 5 percent chance of survival, he’s still alive. (EthnicNEWz.org photo/Eduardo A. de Oliveira)
Samuel Gonçalves is your typical soccer aficionado. Born in Brazil in a family of three brothers, several first-league clubs in the soccer-loving country were interested in the young teen for a possible spot on their teams.
But then a religious mission brought his father, a Methodist pastor, to Saugus, Mass., to establish a Portuguese-speaking congregation.
Sam first stepped into Logan International Airport at age 13, eager to keep his soccer dream alive. His family settled down in Medford, outside of Boston.
His sporting skills earned him a mid-fielder position on the Medford High School soccer team, which then became a top-ranking contender in the state. Medford Mayor Michael J. McGlynn honored the promising player with a key to the city.
At 18, and at the peak of his physical form, he had two options: follow the footsteps of his older brother, who was captain of the University of Massachusetts-Boston soccer team, or work for a while before embarking into college life. Sam chose the latter.
He worked 80 hours per week, splitting time between one gig in the kitchen of a restaurant and another as a garage attendant at the Lahey Clinic in Burlington, Mass.
On top of the hectic routine, Sam was a frequent face at the gym, as he kept himself in shape for the soccer field.
During that hectic period, Sam started to feel unexplainable chest pain.
“It would come as sudden[ly] as it would disappear, sometimes with a two-week period in between,” Sam told EthnicNEWz.org.
One morning, the chest pressure was unbearable. His primary care physician prescribed medicine for pneumonia. But it was the surprising results of a chest X-ray that brought Sam to Massachusetts General Hospital (MGH) in Boston.
“I was filling [out] a form and the first question [was]: ‘What is the reason for your visit today?’ The lobby attendant had answered it for me,” said Sam.
Her answer, “lung tumor,” shocked him. Sam was diagnosed with a lung tumor — known to his doctors as a teratoma with malign transformation to sarcoma — larger than a tennis ball. What followed added the Brazilian athlete to the annals of world medicine, with a type of cancer so rare that only 20 known cases of it have occurred worldwide in the last 50 years.
“Sam had a teratoma with malign transformation to sarcoma, and it covered most of the left side of his chest,” said Edwin Choy, a medical oncologist, or cancer specialist, at MGH, who said he had never seen such a case.
Two days later, Sam started chemotherapy.
“As young and healthy as he was, it afforded us to [the ability to] be very aggressive in fighting the cancer,” said Choy.
The chemotherapy treatment was painful and complex. The goal of the treatment was to reduce the size of the tumor to prepare Sam for major surgery.
He was scheduled for four cycles of chemotherapy over a period of more than two months. Each cycle consisted of one week of daily treatment followed by 15 chemo-free days.
At home, pastor Juarez Gonçalves, Sam’s father, took a six-month leave of absence from the pulpit.
“As a pastor, I used to pray for people to believe in God. Now it was about me. So I could not be dishonest with God, the community or myself,” said Gonçalves.
The first months were the hardest. But the community’s support was just as great. The City of Medford organized a fundraising event for Sam, which resulted in $10,000 to buy him a new car, a crucial psychological support to keep him looking forward to just surviving and not dying.
At least 40 churchgoers took turns at hospital prayer vigils. As the family routine turned upside down, some friends would cook for the Gonçalves. Others would clean their home.
“In between chemo sessions, we chatted for hours, about anything but the disease,” said Talita Cristiane Morais Santos, 20, one of Sam’s closest friends.
Federal policy dilemma
The first cycle of chemotherapy took a toll on Sam’s deteriorating health as he went through dramatic weight loss. The pain was so unbearable that the chemotherapy had to be stopped, and Sam was rushed into surgery.
The goal of the chemo was to reduce the tumor; instead it began to bleed and became inflated, pushing Sam’s heart toward the right in his chest cavity.
As he was rushed into surgery, Sam’s doctor warned him that his chance of survival was 50 percent.
“Prior to the surgery, he said, ‘I don’t want to talk. I need to retain all my energy for the surgery,’” his father recalls.
“For a cancer this rare, nothing in his treatment was considered normal procedure,” said Choy.
The 12-hour surgery successfully removed Sam’s entire left lung. He was then scheduled to receive seven weeks of daily radiotherapy.
His family was facing another dilemma: how to pay for Sam’s medical care.
It was February 2007, and the State Children’s Health Insurance Program (SCHIP) was no longer active. When the SCHIP federal law had been in effect, it enabled eligible kids to get health care coverage if their parents earned too much to qualify for Medicare, but too little to afford private insurance.
Sam didn’t qualify for government-paid health treatment that required at least five years of being a green card holder. Sam was two years shy of the requirement.
Sam’s father added him to his health insurance coverage for nine months, at an additional cost of $560 per month. The insurance covered the full $180,000 cost of Sam’s emergency surgery.
But other medical costs were only covered for 80 percent, leaving Sam’s family to pay the remaining 20 percent, or $50,000 — a medical debt that still haunts them two years later.
Community support remained high as e-mails and letters poured in from Argentina, Paraguay and Panama. The father of a local friend visited a church in Boston to pray for Sam. When he approached the pulpit to deposit a little note with the soccer player’s name, Sam’s father recalled, he noticed that nine other people had done the same.
“He was very strong,” said Santos, his good friend. “Even when we went shopping for a new hat for him, I never saw him complaining.”
In fact, Sam seemed to bear much of the burden remarkably well. Nurses would often joke about him not being “a fun patient,” because he didn’t complain of anything.
However, as the young patient was re-establishing his health — he even went jet skiing that summer — doctors wanted to be certain Sam was cancer-free, and prescribed four more chemotherapy sessions.
After experiencing the pain and suffering of his previous chemo sessions, Sam confided to Santos that he’d rather die than have to take more chemo.
One last miracle
At the end of 2007, doctors found small traces of what they thought could be tiny tumors in his gallbladder. But Sam received medical approval anyway to take a trip to Brazil. There, the embrace of his relatives was bittersweet, as his gallbladder surgery was scheduled for a month later in Boston.
But at least Sam he was able to go to Brazil — and with good news, too.
After four attempts at applying for MassHealth, a state-run health insurance that pays for the care of low- and medium-income residents, his application was accepted. MassHealth covered his gallbladder surgery, just as his father’s nine-month insurance extension was expiring.
The surgery was complex, requiring the removal of a nodule that was difficult to reach. The pastor and his wife gathered some church members and improvised interpreters to endure the eight-hour wait.
But within 45 minutes a doctor came to the waiting room. Gonçalves’ heart pounded heavily.
“The surgeon came to inform us, upon the first surgical cut, the tiny tumor jumped out … dry and dead. What a relief,” said Gonçalves. “I have no other explanation but to say it was God’s hands acting. We were aware that we depended on Him 101 percent, but we never question that dependency.”
Today, Samuel Gonçalves sits in a room at the Saugus Community United Methodist Church. Although he’s looking forward to finally going to college, his soccer aspirations have evaporated.
He pauses, searching his memory for a moment that occurred after the last surgery, when Dr. Choy told him he had only a 5 percent chance of survival.
Sam breathes slowly — but decisively.
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