Science Meets Strength: New Treatment Offers Hope for Santiago
Santiago “Santi” is like most 5-year-olds: he loves monster trucks, painting and learning about geography. What sets him apart is his extraordinary resilience. He recently began jiu jitsu, undeterred by a leg brace that he wears because of a rare soft-tissue tumor. “He refuses to let anything hold him back,” says his mom, BreeAnn.
From his first days, Santi’s parents suspected something was wrong. He seemed to cry more than he should, as if he were trying to tell them something. One leg also seemed limp, and a small lump on Santi’s left buttock caught BreeAnn’s attention. At 6 weeks old, doctors diagnosed him with an infantile fibrosarcoma — an aggressive type of soft tissue cancer. “It was devastating,” BreeAnn says. “I was still trying to figure out how to be a mom. Suddenly, I had to learn a scary new world of medicine and advocacy.”
In navigating this agonizing path, the family found their way to Children’s National Hospital. Under the care of oncologist AeRang Kim, MD, PhD, Santi joined a clinical trial for a new drug aimed at stopping the tumor’s growth by targeting the rapid reproduction of cells.
“The tumor started to shrink, and for the first time, we felt hope,” BreeAnn says. “From day one, Children’s National took the time to support our whole family. They held us in our space, and Santi in his. Dr. Kim explained everything in a way we could understand and never pretended to have all the answers. That respect and honesty built a great deal of trust.”
Through it all, Santi remained joyful and engaged, supported by the nursing staff and Child Life team. He often spent time outdoors in the Bunny Mellon Healing Garden. “They make the hospital feel like a place he wants to go,” BreeAnn says. “That matters so much.”
Santi has completed the therapy in the clinical trial but continues daily oral targeted therapy and undergoes MRIs every six months. Surgery may soon be an option, but the tumor’s complex location makes it challenging. The care team is exploring other innovative treatment options, such as image-guided, high-intensity focused ultrasound, to treat the remaining tumor locally. This noninvasive procedure uses sound waves to heat and eliminate tumor tissue.
BreeAnn finds comfort in Dr. Kim’s persistence in exploring every treatment option. Dr. Kim and her team make sure the family feels supported and informed. “We’re fortunate to have access to this level of care and research,” BreeAnn says.
Today, Santi is thriving — and fighting. Whether he’s on the mat or painting his next masterpiece, he’s showing the world what strength looks like.
From his first days, Santi’s parents suspected something was wrong. He seemed to cry more than he should, as if he were trying to tell them something. One leg also seemed limp, and a small lump on Santi’s left buttock caught BreeAnn’s attention. At 6 weeks old, doctors diagnosed him with an infantile fibrosarcoma — an aggressive type of soft tissue cancer. “It was devastating,” BreeAnn says. “I was still trying to figure out how to be a mom. Suddenly, I had to learn a scary new world of medicine and advocacy.”
In navigating this agonizing path, the family found their way to Children’s National Hospital. Under the care of oncologist AeRang Kim, MD, PhD, Santi joined a clinical trial for a new drug aimed at stopping the tumor’s growth by targeting the rapid reproduction of cells.
“The tumor started to shrink, and for the first time, we felt hope,” BreeAnn says. “From day one, Children’s National took the time to support our whole family. They held us in our space, and Santi in his. Dr. Kim explained everything in a way we could understand and never pretended to have all the answers. That respect and honesty built a great deal of trust.”
Through it all, Santi remained joyful and engaged, supported by the nursing staff and Child Life team. He often spent time outdoors in the Bunny Mellon Healing Garden. “They make the hospital feel like a place he wants to go,” BreeAnn says. “That matters so much.”
Santi has completed the therapy in the clinical trial but continues daily oral targeted therapy and undergoes MRIs every six months. Surgery may soon be an option, but the tumor’s complex location makes it challenging. The care team is exploring other innovative treatment options, such as image-guided, high-intensity focused ultrasound, to treat the remaining tumor locally. This noninvasive procedure uses sound waves to heat and eliminate tumor tissue.
BreeAnn finds comfort in Dr. Kim’s persistence in exploring every treatment option. Dr. Kim and her team make sure the family feels supported and informed. “We’re fortunate to have access to this level of care and research,” BreeAnn says.
Today, Santi is thriving — and fighting. Whether he’s on the mat or painting his next masterpiece, he’s showing the world what strength looks like.
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