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Research
Twelve-year-old Stephan Boehme inspires others through his illness
It’s a hot, midsummer day—one most 12-year-old boys spend on a baseball diamond or swimming with friends. Instead, Stephan Boehme sits in the Solid Tumor Clinic at St. Jude Children’s Research Hospital with his mother, Patty Gutiérrez. He could be complaining, but he’s preoccupied with TV shows, frogs and bears.
“Did you watch CSI last night?” he asks a St. Jude staff member, in reference to the series set in Florida, his home state.
Unsatisfied with the “no” answer he receives, Stephan explains the show’s plot before quickly moving to another subject. As he talks, he hangs onto his stuffed bear Rocky, who accompanies him everywhere. Adorned with a bracelet that bears the phrase “Go Steph Go,” Rocky is as soft and cuddly as the day he was purchased nine years ago.
Stephan expresses concern over a few faded patches on Rocky’s paws, but his mother reassures him the bear is fine.
“That’s the way Stephan is,” Patty says. “He worries about everybody.”
On the evening of January 5, 2007, it was time to worry about Stephan. He suddenly felt pains in his abdomen during a trip to the movies with his mother, his fraternal twin brother, Christian, and his younger sister, Ivanna.
“I was feeling really weird, but I didn’t want to say anything because I wanted to watch the movie,” he says.
It didn’t take long for Patty to notice her son sweating as he limped down the stairs of the theater. She immediately took Stephan to a local hospital.
Hours later, doctors found a mass in Stephan’s stomach and checked him into the hospital for more tests. After five or six days, doctors still could not identify the tumor. Patty phoned her oldest brother, Juan José Gutiérrez. “I understood that his only opportunity to live was if he flew to Memphis and put his life in the St. Jude doctors’ hands,” says Juan José, who helped Stephan obtain a physician’s referral to St. Jude.
Within 24 hours of his arrival at St. Jude, Stephan was found to have desmoplastic small round cell tumor, a rare, aggressive cancer with a low survival rate.
Stephan’s uncle was no stranger to childhood cancer or to St. Jude. Juan José is president and CEO of Pollo Campero, which helps raise nearly $2 million annually for pediatric cancer research and treatment in Guatemala.
A chicken restaurant chain with more than 200 locations in seven Latin American nations as well as the United States, China, Indonesia and Spain, Pollo Campero is the primary corporate sponsor of the St. Jude International Outreach Program in Guatemala.
With Pollo Campero’s support, St. Jude helped establish a pediatric cancer facility in Guatemala’s lone public hospital, Unidad Nacional de Oncologia Pediátrica.
This charitable groundwork was laid long before Juan José learned that his nephew had cancer. Ironically, Juan José was already scheduled to present a donation check to the cancer treatment program when Stephan first felt pains in his abdomen. Juan José says Stephan’s cancer has helped the family gain a new appreciation of their charitable work and of the St. Jude mission.
“His diagnosis touched the whole family,” Juan José says. “We understand from the bottom of our hearts what this really means.”
Doctors at St. Jude see one or two cases each year of desmoplastic small round cell tumor, which predominantly develops in young males. According to Carlos Rodriguez-Galindo, MD, of St. Jude Oncology, the cancer is usually advanced by the time it is diagnosed, as it was in Stephan’s case.
“The current approach that we are using is very intensive chemotherapy,” Rodriguez-Galindo says. “We escalate chemotherapy and try to remove as much of the tumor as possible.”
Rodriguez-Galindo and Patty have talked to Stephan from the beginning about his cancer, his treatment and his prognosis.
“Stephan asks me a lot about his cancer, and he knows everything about it. He knows the big, long name. He knows it was 20 percent survival rate when we came, and that now it’s maybe 30 percent,” Patty says.
Stephan, who has received nine rounds of chemotherapy, has responded well to treatment. In April, he underwent successful surgery to remove several abdominal tumors, one of which was nearly 5 inches in diameter. Chemotherapy is scheduled to continue until he undergoes a bone marrow transplant later this year. His bone marrow was harvested in early March for the procedure.
“He is always ready for chemo. I’ve never heard him complain about anything—not about pain, about not feeling well or about being unhappy,” Rodriguez-Galindo says. “He always says, ‘Awesome.’ Even after his surgery, when he could barely breathe, he would say that.”
Occasionally, however, Patty wishes Stephan would be less stoic.
“Sometimes, I think, ‘Stephan, complain. I need you to cry,’” Patty says. “I have to push him to react because he doesn’t want me to be sad or upset.”
Before his diagnosis, Stephan spent most of his time listening to his favorite band, Linkin Park; cheering the Miami Heat NBA team; or goofing off with his siblings and their miniature Schnauzer, Saskia. He still loves those things, but the cancer, chemotherapy and monthly visits to St. Jude have helped him grow into a more sensitive, intuitive person, according to his mom and uncle.
“He is teaching us how to live, and we have all experienced his transformation,” Juan José says. “His understanding of life is 100 percent different than it was in the past.”
It’s not surprising to hear Stephan dispensing cheerful guidance to other St. Jude children to ease their concerns. His inquisitive and playful nature is revealed whether he’s joking with Rodriguez-Galindo about his latest haircut or watching wild animals run across the TV screen in his hospital room.
“I would imagine it is quite easy for a near teenager to be upset and angry at what he has to endure, but not Stephan,” says one of his favorite nurses at St. Jude, Candice Duffy. “He has chosen to look at his journey through a different set of eyes. He remains upbeat, drawing strength from his family, and most importantly, his faith.”
Stephan’s journey has brought inspiration to both friends and strangers. Two weeks after his surgery, he was greeted with applause and warm support as he stepped out of a car at a fundraising run in his home town. Stephan took the first lap around the park along with a host of cancer survivors, who were eager to take photos with him.
And there’s the story of two of his classmates, who were moved enough by Stephan to begin attending church again.
“They found out I had cancer, and now they’re going to church every Sunday, and all the kids are praying,” Stephan says of his sixth-grade classmates. “I feel really good that I’m able to help change people.”
It didn’t take long for others to realize how special Stephan was, as well. He and his family attended the fifth annual FedEx/St. Jude Angels and Stars Gala earlier this year. Stephan was the guest of honor at the event, which was chaired by entertainer Daisy Fuentes. He danced with Fuentes, won the silent auction prize of a basketball signed by the 2006 NBA champion Miami Heat, and played the drums on stage.
“Stephan was the star of the night, and all of the attention was for him,” Patty says. “Everybody was in shock. They couldn’t believe he was playing the drums.”
By the end of the night, Stephan sympathized with celebrities who are hounded by the paparazzi, but he wasn’t eluding any flash bulbs.
“It was really cool because I felt famous,” Stephan says. “People came up to me and asked for pictures. I didn’t want to say no because that would be rude.”
Few days will be as memorable as the one in early June when Stephan graduated from fifth grade alongside Christian. Stephan, an honor roll student since first grade, and Patty both arrived at the ceremony thinking he would not graduate because he had missed so much school during treatment.
Stephan sat with his classmates and even wore the Class of 2007 T-shirt, but he was nervous because he thought he was not going to receive a diploma. He awoke that morning unsure if his blood counts were high enough to allow him to attend, but he was assured midday that he could make the trip.
What happened next sent a wave of thunderous applause through the crowd.
“Our surprise was incredible when the principal called, ‘Stephan Boehme Gutiérrez.’ The entire school got up…parents started to applaud, and everyone was stomping their feet in joy,” Patty wrote in a journal. “I got goose bumps all over my body, and tears were hard to hold. It was a memorable moment, and my angel, who wanted to cry, was containing himself with a great smile that I will never forget.”
While Stephan and his family understand his prognosis, it has not affected their resolve, their faith or their ability to enjoy each day together. He understands that no one is guaranteed tomorrow, so he enjoys the daily nuances of life.
Stephan loves Miami Heat star Dwyane Wade. He drives his mom crazy by banging a pretend drum during car rides. He likes to tell embarrassing stories about his younger sister. And he just happens to make monthly visits to St. Jude.
“The people here are really nice,” Stephan says of the hospital.
Patty sometimes refers to herself and her children as the Fantastic Four. The Fantastic Four know there will be tough days ahead, but this realization helps make the good times more special.
Reprinted from Promise Autumn 2007
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