Beyond words - Miguel Betances Lee

At St. Jude, Miguel Betances Lee has brushed up on his English. Thanks to faith, optimism and a dedicated clinical team, he has also mastered the language of hope.

by Elizabeth Jane Walker

Beyond Words

During English language classes in the Dominican Republic, Miguel Betances Lee conjugated verbs, memorized vocabulary words and chuckled at American idioms. But he did not learn the terms “malignancy” or “limb-sparing procedure” until he arrived at St. Jude Children’s Research Hospital in March of 2010. That is when his total immersion classes really began.

Many high school students prefer to spend Saturday mornings snuggled in their beds, catching up on lost sleep. Miguel’s typical weekend schedule was much more arduous. Every Saturday for a year, he boarded a bus and traveled two hours to participate in four-hour English classes. For a teen aspiring to a career as a software designer, the sacrifice seemed like a good investment in the future.

“English is a global language—the language of commerce,” he explains. “People may be Chinese, German or Portuguese, but they usually know English.”

Language classes were not Miguel’s only passion.

“Basketball, baseball, soccer, chess—I played everything,” he says. “And math—trigonometry, algebra—I love it, I love it, I love it.”

In November of 2009, the athlete and honor student began experiencing pain in his thigh. An ultrasound indicated a muscle problem. Several months passed; his discomfort increased. When a local physician diagnosed chondrosarcoma, a cancer of the cartilage, Miguel’s family traveled to a hospital in Florida for a second opinion. There, they learned that he actually had a malignant bone cancer called osteosarcoma. By that time, the tumor had grown substantially. Doctors explained that treatment would require high-dose chemotherapy and the possible amputation of his leg. There was no time to lose. Miguel’s family obtained a referral to St. Jude.

The language of teamwork

As soon as Miguel arrived in Memphis, his St. Jude clinical team leapt into action.

“Miguel had a massive tumor and needed treatment immediately,” recalls Nurse Practitioner Nancy Bailey. “He was in a lot of pain and had extremely high blood pressure. It was evident right away that he was in too much pain to be managed by our usual oral medications.”

Members of the hospital’s Pain Management Service administered a nerve block to control his pain so that he could begin chemotherapy.

An extensive team of professionals helped Miguel’s family cope with a confounding array of medical, cultural and language challenges. He and his parents met with staff ranging from interpreters and social workers to clinical pharmacists and chaplains. Child Life  Specialist Cara Sisk offered to help Miguel with relaxation techniques and assisted him in creating a video to send to his friends in the Dominican Republic. “Even in hard times, he had a positive, upbeat attitude,” she recalls.

Dietitian Whitney Orth from Clinical Nutrition  monitored Miguel’s nutritional intake and needs. “When his chemotherapy got intense, we talked about the best foods to eat,” she says. “The chemo can cause mouth sores; it can make you really nauseated. Even if you want to eat, it can be difficult.”

“All the people were so charming, so sweet and helpful,” Miguel says. “We thanked God for them.”

The language of faith

Miguel knew that he must eventually undergo an operation to remove the tumor. He and his family prayed that the chemotherapy would kill as much of the cancer as possible so that an amputation could be avoided. Miguel’s surgeons, Michael Neel, MD, and Bhaskar Rao, MD, hoped to perform a limb-sparing operation, in which the diseased bone would be replaced with a prosthesis; yet, the tumor’s location, size and proximity to major nerve pathways made amputation probable.

“I had faith that I would not lose my leg,” Miguel says. “I prayed to baby Jesus every day.”

When Miguel went into surgery, he knew that amputation was a strong possibility.

“It was tedious,” recalls Rao, who was one of the first surgeons in the U.S. to perform limb-sparing operations and has completed nearly 300 such procedures. “Normally, this surgery takes up to three hours. This one took seven or eight. I separated the nerves and the vessels from the tumor, and Dr. Neel put in the prosthesis.”

The surgeons emerged from the operating room exhausted but exhilarated. Chemotherapy had killed more than 90 percent of the tumor, and they had preserved Miguel’s leg.

The language of optimism

Miguel’s journey was far from over. Because limb-sparing surgery involves stretching the nerves, he experienced excruciating discomfort, called neuropathic pain. Once again, the Pain Management Service stepped in to help.

“Neuropathic pain is common after limb-sparing surgery,” explains Doralina Anghelescu, MD, Anesthesiology. “It’s almost like an amputation where you’ve cut the nerves and the patient has phantom limb pain. In this case, the limb is still there, but the nerves have been traumatized so the children have a shooting, tingling, burning, needles-and-pins pain for up to two to three months. Miguel’s persistent nerve irritation was difficult to treat, requiring many layers of treatment.”

As suddenly and abruptly as it had arrived, the pain disappeared.

Miguel also experienced cardiac complications, an extremely rare side effect of one of the chemotherapy drugs. His oncologist, Alberto Pappo, MD, designed a new treatment regimen in conjunction with Miguel’s cardiologist, Vijaya Joshi, MD.

“Miguel’s recent tests came back completely normal,” Pappo reports. “We’ve been able to deal with all the complications of therapy, and now Miguel has a functional limb, no pain and a normal heart. Things are looking rosy for him.”

The language of hope

A keen sense of humor, strong family support and a steadfast faith have helped Miguel weather the storms of cancer treatment. He has also demonstrated extraordinary determination. Physical Therapist Terry Wilson helped Miguel strengthen his muscles before surgery and regain his strength and range of motion afterward.

“Miguel has a lot of energy; he’s outgoing and engaging and friendly,” Wilson says. “Even when he’s in a lot of pain, he still keeps a positive attitude toward his rehabilitation. Miguel says he works out regularly in the gym at Target House. I can tell that he follows through, because he’s making great progress.”

Tracy Long, Miguel’s English instructor for the past year, has marveled at the teen’s attitude as well as his aptitude for languages. “His English is incredible,” she says, “and he’s the most amazing young man. It’s my job to encourage and inspire him, but I’m the one who’s always encouraged and inspired. Miguel has a special inner light and a spirit that will not let him see the negative. He and I have had discussions about how hard some days are, but he tells me you have to look for the positive; it makes a difference when you choose that. His attitude is just fabulous, despite all that he has been through.”

Whether he’s conversing in English or Spanish, Miguel speaks the language of hope.

“I try to never give up and to set an example for the other kids,” he says. “If I can do it, they can, too. Everyone here is going through a hard time. We have to try to keep the faith; to keep praying; to never give up. We have to be positive—to say, ‘I can beat the cancer. I can fight, win. With God’s help and the help of my family and doctors, I’m going to be healthy again.’”

Promise Spring 2011

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