A cancer diagnosis didn’t stop her from going to her prom
Brian Rufin Lebrigio had been complaining of pain in his leg.
He was 13 and his parents took him to Nicklaus Children’s Hospital in the summer of 2016. There, he was diagnosed with high-grade osteosarcoma, a type of bone cancer, to his right distal tibia (just above his ankle).
“The moment my family was told about it, they all broke down,” he said. “I was always a happy kid, so when they told me, I felt no sadness.”
Yet, the effects of chemotherapy and cancer took a toll on his young body.
“I could barely move from my bed because of the pain,” he said. “There were moments that I didn’t know what to do because I was going through a lot, but I always remembered that I was not fighting cancer by myself. My family was there for me, the doctors, and even people that I didn’t know were supporting me.”
Osteosarcoma is the most common type of bone cancer in children and teens. The cancer occurs when the cells that grow new bone form a cancerous tumor. The “high grade” classification means that tumor cells can grow rapidly and spread quickly if not treated in time.
Brian, now 16 and living in West Kendall with his family, finished treatment in March 2017. As of now, he is cancer free.
“I’m preparing every day, so that in the future I can become a physician and help others — just as many did when I needed them the most,” he said.
Dr. Maggie Eidson Fader, a pediatric oncologist and director of the sarcoma and solid tumor program at Nicklaus Children’s Hospital, was Brian’s doctor. She and her team, made up of physicians from pediatric and radiation oncology, among other specialties, treated him with chemotherapy and surgery to remove the tumor.
“The specialists meet regularly to discuss patient care, participate in research, and participate in multidisciplinary clinics for the patients,” she says.
Sometimes, to ensure all of the cancerous cells are removed, patient’s limbs have to be amputated. Advances in medicine, however, have provided more options without amputation.
In the case of Brian, his foot was saved by reconstruction.
There are more than 50 types of sarcoma, but they can be grouped into two main types, soft tissue sarcoma and bone sarcoma, or osteosarcoma.
Sarcoma tumors are most commonly found in the bones, muscles, tendons, cartilage, nerves, fat and blood vessels of one’s arms and legs. About 80% of sarcomas begin in the body’s soft tissues (cartilage, muscle, fat, and tendons). The other 20% arise in the bones.
Many times, the symptoms of osteosarcoma can be mistaken for growing pains or sports injuries in children and adolescents, before diagnostic imaging is done.
“Sarcomas can arise almost anywhere in the body,” said Jonathan Trent, M.D., Ph.D., director of the sarcoma program at Sylvester Comprehensive Cancer Center at UM Miller School of Medicine. “A type of bone sarcoma, osteosarcoma, can arise in any bone in the body.”
By contrast, “the common cancers, carcinomas, arise in a single organ,” he explained.
Sarcomas are rare, but are more common in young people than in adults. Sarcomas make up about 15% of pediatric cancers, compared to 1% of adult cancers.
“A recent addition to our sarcoma team has been a program tailored to adolescents and young adults (AYA),” said Trent, adding they are working to preserve fertility for the young patients, as well as surviving.
Sylvester and Nicklaus also offer targeted therapies and clinical trials for patients with tumor mutations. “Targeted therapies are designed to home in on a cancer-causing protein that is found only on the tumor cell, so that normal cells are not damaged much, at all,” he said. “Immunotherapy used in sarcoma is able to remove the camouflage from the tumor cells so that the patient’s own immune system is able to attack and destroy the sarcoma cell.”
He says that sarcoma patient care is evolving rapidly. Currently, Sylvester offers more than 25 clinical trials for sarcoma patients.
The most common sarcomas in children are rhabdomyosarcoma (muscle), osteosarcoma (bone cells), and Ewing sarcoma (in or outside of bone).
Iftikhar Hanif, M.D., is the medical director of the division of pediatric hematology/oncology at Joe DiMaggio Children’s Hospital in Hollywood.
Hanif says that patients at Joe DiMaggio are being given more precise radiation therapy with help of proton beam radiotherapy. (Nicklaus, too, uses this.)
Both Joe DiMaggio and Nicklaus participate in the MATCH trial for patients with solid tumors, which include sarcoma.
“In this study, relapsed patients’ tumors are tested at the National Cancer Institute for molecular abnormalities. If they are found to have targetable lesions, NCI provides agents for the treatment to these patients,” Hanif said.
“Joe DiMaggio has tested many patients and a few are already receiving these treatments. We are hoping that this is just the beginning of this new era of treatment.”
Claudia Medeus, 17, of Coral Springs, is betting on medical science finding a cure.
The high school senior, who attends Coral Glades High School, found out in March that she has rhabdomyosarcoma, the most common soft tissue cancer in children and adolescents.
The diagnosis came just two months before her senior prom, or as she puts it, “the day I have been dreaming of since I stepped into high school.”
“I thought the doctors were just messing with me or I was misdiagnosed,” she said. “And I was also thinking: prom.”
Medeus has been receiving inpatient and outpatient care at the Salah Foundation Children’s Hospital at Broward Health Medical Center in Fort Lauderdale.
“At that point, I thought my life was over,’’ she said. “Then I started treatment and it made me so sick and there was much risk. I was scared to even go to prom. I just wanted to sink into a black hole forever.
“After a couple of weeks, I thought, ‘It’s my senior year and I shouldn’t let cancer take my happiness away.’”
Since her immune system has weakened, doctors were hesitant to give her the green light to attend prom.
“When I asked the doctors, it went from, ‘We don’t know to maybe to we’ll see to you can go.’ I was so excited to tell my friends, ‘Hey guys, I’m going to prom!’ At that moment I forgot I had cancer.”
“Rhabdomyosarcoma accounts for 5% of pediatric tumors,” says Hector Rodriguez-Cortes, M.D., medical director of pediatric hematology/oncology at the Salah Foundation Children’s Hospital at Broward Health Medical Center. “This tumor originates from muscle tissue. In a small group of cases, it seems to be associated with some genetic disorders or familial cancer syndromes.
“Unfortunately, the cure rate for this type of tumor remains a challenge,” he said, “mainly due to two major risk factors: drug resistance to the tumor and metastatic disease at initial diagnosis.”
Medeus went to the prom on May 18.
“I don’t let my cancer define who I am,” she said, “because I know I’m a funny, bubbly, crazy fun girl and that will always be me.”
Caitlin Granfield can be reached at firstname.lastname@example.org