Lauren Lugo has known she was different since she was small. "I have always had symptoms, as long as I can remember," recalled the now 26-year-old, who spent her childhood in Orange County. "I couldn't go out and play like other kids. I was told at a very young age by a doctor, 'Young lady, if you fall, we don't know if your condition's going to cause all your bones to break.' Hearing that was just hard to believe."
Discovering she had a life-threatening disease was one thing, but the fact that none of the numerous physicians she visited could identify specifically what was wrong was even harder for Lugo, her parents and her younger sister.
"It was something that we kind of went through all together, holding hands and blindfolded as a family of four, and hoping each time that this one would be the door to some answers.”
Over the next few years, the family made its way through several hospitals and doctors before finding City of Hope and Judith Sato, M.D., in 2004. Sato, a pediatric oncologist who is also currently director of the Musculoskeletal Tumor Program, was able to finally give Lugo some answers.
'A Very Rare Disease'
"She has something called hemangiomatosis of her bones,” Sato explained. “It is essentially a tendency for her to develop these abnormal growths in the bone that are formed of blood vessels, sort of dilated blood vessels, if you will. What happens then is that the bone gets weaker and it kind of thins out and so you have a high predisposition to fracture. It's a very rare disease. It's one of the diseases I specialize in."
While perhaps known best for treating cancer, City of Hope also has expertise in rare diseases that may or may not have an oncologic component.
Sato recalled the extent of Lugo's illness when she first encountered her as a young patient. "The disease causes sarcomas, and other kinds of tumors that don't have to be malignant, but they very much cause life-changing pain and the inability to walk. That's the way she was when she got to me. She was a teenager who was having a lot of pain, couldn't walk correctly because of the pain, and she had these growths all over her body. It was in almost every bone in her body: her ribs and her forearms and humerus, and the femur. Just everywhere. It was also at the base of her skull, where the blood vessels flow through to reach your brain."
An Added Diagnosis
Adding to that, which caused not only pain but also external bumps where Lugo's tissue was thin, was an additional diagnosis, Kasabach-Merritt syndrome. In this disorder, blood components like platelets get trapped in the abnormally dilated blood vessels. This forms extra blood channels, which makes the heart work harder and can weaken the heart muscle.
Both are extremely rare, but with City of Hope's resources and Sato's expertise, Lugo's life was transformed. Her tumors were not malignant, but she began a long course of chemotherapy, receiving shots seven days a week for two years, then five days a week for another four years.
"I was 13 years old when it started,” Lugo recalled. “There was going to be no guarantee it would help, but my mom had to learn how to stick a syringe in my body, and I had to use it daily. It was a big secret; I kind of shoved it under a rug. It was something that I felt sort of ashamed of, and how do you explain to people? You don't want to necessarily say, 'Hi, my name is Lauren Lugo. I'm a freshman in high school and I'm currently experimenting with chemo.'"
Light and Aura
Now, as an adult with her illness in check, Lugo is proud to discuss what Sato (who continues to be her doctor, with visits twice a year) and City of Hope have done for her.
"My thoughts on City of Hope are that the hope in itself truly emanates throughout the events, the persistent researchers, teams of doctors, nurses, receptionists. They shed this light and this aura that is almost indescribable, that you can't help but to actually smile and look at the hope, no matter if you feel confused, helpless, unhealthy."
Today, Lugo is a successful singer, having performed at Carnegie Hall and won the prestigious American Protégé International Vocal Competition, and a university student living in Rome, studying journalism and music, with a concentration on opera. It's a long way from that little girl with the hard-to-pronounce rare illness who came to City of Hope 15 years ago. Today her illness is in remission, although she still has to be careful about getting any bumps or bruises.
"I am on the hope journey continuously. I know that stems from my days being at City of Hope," she said. "It continues in the workplace, it continues in your family — you gain this momentum, from being a patient there, to being a survivor, that you must always carry hope and if you have hope, anything's possible. As cliche as that may sound, it really is true."