Jose Andres Acebedo was 3 when his parents, Jose Alberto and Lourdes, noticed he was falling off his bike and bumping into things. Doctors in their native Honduras detected a mass in Jose’s brain, but said there was nothing they could do for him.
At age 5, while on a trip to Chicago, Jose began to experience headaches. He was taken to the emergency department of a large Chicago hospital, where he was diagnosed with a slow growing form of brain tumor known as a low grade glioma. He underwent two surgeries and a month in the intensive care unit but, unfortunately, surgeons were unable to completely remove the tumor due to its location.
Jose’s parents were referred to Lurie Children’s Brain Tumor Center, which treats an estimated 175 new patients each year. There he underwent surgery to drain fluid from his brain. He also underwent genetic testing, which revealed that Jose’s tumor had a specific mutation, BRAF 600, which a new oral chemotherapy drug, trametinib, specifically targeted. He would have to take the medication every day for two and a half years.
Jose responded well to the trametinib. While a portion of his tumor remains, his most recent quarterly MRI scan at the Brain Tumor Center indicated no signs of growth.
Lurie Children’s Precision Medicine Oncology program is revealing insights into the biological, environmental and lifestyle factors that affect each child’s disease to create individually tailored treatment plans. Working closely with colleagues at Lurie Children’s Stanley Manne Children’s Research Institute, the clinical care teams are using powerful new technologies to pinpoint the best treatment for each child based on the molecular signature of their unique form of cancer.
“Now that we can identify the specific mutation within the tumor, we are able to provide a more targeted therapy with less adverse effects than some of our other therapies,” says hematology/oncology Pediatric Nurse Practitioner Irene McKenzie, who together with oncologist Stewart Goldman, MD, Head of the Division of Hematology, Oncology, Neuro-Oncology & Stem Cell Transplantation, are Jose’s primary caregivers. “This targeted therapy has allowed Jose to have an improved quality of life. He plays basketball, loves to dance and is getting good grades in school. He’s living a normal, 10-year-old life.”
The family, which includes Jose’s older brother and younger sister, has stayed in Chicago to be close to his Lurie Children’s care team.
“There’s a huge difference between Lurie Children’s and the hospitals in Honduras,” says Lourdes. “Here, everyone is very kind and cares about us. Their attitude is, ‘We can do something for him.’”
The neuro-oncology clinical research team at Lurie Children's has active phase II clinical trials of trametinib, both alone and in combination with another drug. These trials are sponsored by the Children's Oncology Group and the Pediatric Brain Tumor Consortium, which include member institutions like Lurie Children’s.