March 15, 2002

Edmond and June Lococo know firsthand how difficult it is to see a child in pain and to be unable to help him. When their 2 1/2-year-old son, Alfio, was diagnosed with a tumor in his bladder last year, the family not only had to care for a very sick child, but they also had to maneuver through a difficult health care system in their home city of Beijing, China.

The Lococos' (at right) ordeal began in September 2001 when the family was on vacation in Singapore. They noticed that Alfio was having difficulty urinating. Upon returning to Beijing, they took him to the local children's hospital where an ultrasound was performed that identified a mass in Alfio's bladder. Further testing was done. While the results were not conclusive, doctors said they were 90 percent sure Alfio had cancer. If the tumor was cancerous, they were told, Alfio would have just a 60 percent chance of surviving if treated in Beijing.

Not satisfied with that prognosis, the Lococo family took Alfio to Hong Kong, which was a three-hour flight from Beijing. More tests were done; a biopsy was performed. The biopsy results still were not conclusive, however, and doctors had even more bad news. "They said that the tumor was snarled up against his bladder and urethra," explains Edmond Lococo. "They could perform radical surgery to remove the tumor, but Alfio would suffer a major loss of function — both of his bladder and his prostate. They recommended chemotherapy without the surgery."

Still not ready to accept such a poor prediction for their son's future, the family turned their sights across the globe. They had to make a difficult decision: to relocate to the United States to get the kind of medical attention they wanted for their son.

Edmond Lococo, who is from upstate New York, contacted several U.S. hospitals, including the MGH, to get more information about his son's condition. After several phone conversations with Mary Huang, MD, of Pediatric Hematology/Oncology at MassGeneral Hospital for Children, the Lococo family put the wheels in motion to move halfway around the world to save their son.

A reporter for a financial news service, Lococo was able to get a transfer from the company's Beijing office to its Boston bureau. The family packed up their belongings within 48 hours and arrived in Boston Nov. 1. They immediately met with Alison Friedmann, MD, of Pediatric Oncology, to discuss Alfio's plan of care.

Within three days, Alfio underwent open-bladder surgery performed by Daniel Ryan, MD, of Pediatric Surgery. The surgery confirmed Alfio's diagnosis: He had a rhabdomyosarcoma, a rare soft-tissue tumor. Fortunately, the surgical team was able to completely remove the tumor safely, leaving him with normal function of his bladder, prostate and urethra. "We were ecstatic that they got the tumor out," says Lococo. "We went from being told his tumor was inoperable to having it completely removed within three days after arriving here."

Although the MGH surgical team removed the entire tumor, a follow-up test showed some cancerous cells remained in Alfio's bladder, requiring radiation treatment. Fortunately, the Lococo family had chosen an institution that is one of only two hospital-based centers in the world offering proton beam therapy, a specialized form of precisely targeted radiation. Alfio would be the first pediatric patient to be treated at the center, which opened in November 2001.

The therapy was a particularly good option for Alfio because it would minimize damage to his pelvis and the surrounding healthy tissue. And because his muscles and tissues still are developing, minimizing the side effects was crucial. "With Alfio, we had an opportunity to decrease his risk of severe complications in the future using the proton beam therapy. We've been so pleased with the results of his treatment plan," says Nancy Tarbell, MD, director of Pediatric Radiation Oncology. (seen in photo below, second from left, with the Lococo family)

"It is so exciting to see this kind of cutting-edge technology really make a difference in the life of a young patient and his family."

Alfio underwent his first proton beam treatment Feb. 14 and continues treatment several times a week through March 22. His chemotherapy will continue until September. So far, follow-up evaluations have shown no tumor growth. Now that the family has an improved outlook for Alfio's future, they can better reflect on their decision to relocate so far away from their home.

"We went through an extremely dark period, the darkest time of my life, in Beijing," says Lococo. "It is bad enough to find out that your child has a life-threatening disease, but then we found out that the place where we lived couldn't treat him. We were told he had a 60 percent chance of surviving, and here at the MGH, we were told he had better than a 90 percent chance. We went from a coin toss on the fate of my son's life to almost certain success. I have complete confidence in the doctors here. His prognosis is very good, but it is good only because we came here."