Patients Helping Patients Blog
Patient Profile: Justin Salce
Acute Myeloid Leukemia
When he was just 17 months old, Justin Salce was diagnosed with, and underwent treatment for, acute myeloid leukemia (AML). Justin is 17 years old now, and he doesn’t remember much about being sick. He says he remembers that the pizza at the hospital was good, but that’s about it. His mother, on the other hand, remembers it all very well. “He had been running a fever for close to two weeks and it would spike,” says Orlaida Salce, Justin’s mom, and even though she was told it was an ear infection, there were other symptoms, such as extreme bruising, that made Orlaida think that something more serious was going on.“People thought I was crazy,” says Orlaida who, despite all the tests coming back normal, says she just knew something was wrong. Justin was the fifth of six children and Orlaida was an experienced mom who knew what she was seeing was not normal. “She kept taking me in and they would say I was fine,” says Justin, but Orlaida didn’t give up. Finally, a test revealed the leukemia, which hadn’t shown up in the blood work because it was in the very early stages. Orlaida was told that the survival rate for AML was 25 to 30 percent, but that those statistics were based on adults because AML was rarely diagnosed in children.
When Justin started treatment he didn’t respond to the typical AML protocol and did not go into remission as expected. That’s when the doctor suggested doing a trial of a treatment program from the 1970s that was no longer being used. Orlaida says the program was very costly and not typically approved, but they were able to customize the trial for Justin. The doctor dubbed it the Justin Protocol and after an intense six months of chemotherapy that Orlaida describes as very harsh, Justin went into remission and has had no recurrence. “It wiped it out,” says Justin. “I just feel so lucky the program was made specifically for me.” While there’s been no other maintenance, Justin does require regular check ups to ensure he stays healthy. “He got a lifetime of chemo in six months,” Orlaida says, “so they monitor his heart.” That happens every three years now. “It used to be every year, but my results were stellar,” says Justin.
The first year though, Orlaida says they basically lived in the hospital. She says it was a very lonely time and the stress took a toll on her. Shortly after a party celebrating Justin’s one year of remission, Orlaida says she ended up in the hospital. They never figured out what was wrong with her but decided it must have been stress-related. She says it was after Justin was in remission for five years that she could breathe a little easier. Her experience inspired her to volunteer with various cancer organizations. “I felt that the reason my son got sick was so I could help others,” she says. “I wanted to help other parents not feel as alone as I felt.”
Justin isn’t sure if having cancer affected the way he lives or not, “I was so young, I didn’t know any different,” he says, but it did affect Orlaida. “You don’t forget for the rest of your life,” she says. “I’m very blessed to have my child.” Both Orlaida and Justin say they feel lucky. “We got a second chance and we’re going to make the best of it,” says Orlaida.
Justin is now a senior in high school; he’ll be 18 in June, and he’s the picture of health. “I’m living a good life now,” he says. He likes computers, his favorite hobby is training at the gym, and he’s very health conscious. “He knows how precious health is,” says Orlaida. And, while he is doing very well, he’s not totally out of the woods. With cancer, there is always a chance it can come back and, in Justin’s case, he could encounter issues as a result of the intense chemotherapy. He doesn’t typically like to tell people he is a cancer survivor. “I feel like they’d treat me differently,” he says, but now, on the verge of adulthood and looking at his future, he’s ready to talk about the experience. “Sharing my story could help other people,” he says. “If I tell my story it could give them hope.”
Jennifer Lessinger has been a professional writer and editor in some form or another for twenty years. She learned about the importance of patient empowerment fifteen years ago when she became sick with what would later be diagnosed as an “unspecified” chronic illness.