Joseph

Four-month-old Joseph appeared to be a healthy and happy little boy. He was meeting all of his developmental milestones and even exceeding some expectations, demonstrating abilities typically seen in six-month-olds.

Approximately two weeks ago, Joseph's family noticed his eyes bulging. Initially, they dismissed it as a possible behavior he might have picked up from his older sister or other children. There were no other changes in his personality or development that caused immediate concern.

On March 30th, 2024, Joseph's parents observed not only bulging but also a downward deviation in his eyes. They attempted various techniques to get him to track objects, such as shaking keys, snapping, and offering his bottle, but he showed no response. This lack of visual tracking, coupled with a mother's intuition, prompted them to seek medical attention at UCLA Harbor General (Torrance, CA).

Initially, the hospital staff reportedly found nothing amiss and prepared for discharge. However, a nurse insisted on having a supervisor and neurologist evaluate Joseph before his release. A head circumference measurement revealed a size of 44.5 cm, exceeding the expected maximum of 42.5 cm. This raised a red flag for the neurologist, who then requested a video recording of Joseph's eyes. Upon reviewing the video, the neurologist identified a clear abnormality and recommended a CT scan.

The CT scan images confirmed the presence of a brain tumor. Joseph was admitted and remained hospitalized for four days.  His parents then made the decision to transfer him to CHOC of Orange County, seeking more experienced physicians specializing in pediatric care.

Since his arrival at Children’s Hospital of Orange County on April 3rd, 2024, Joseph has undergone multiple MRIs, an Endoscopic Third Ventriculocisternostomy procedure, and a tumor biopsy. Unfortunately, only one tissue sample out of 6-8 biopsy attempts yielded any material. While the tissue sample was insufficient to definitively diagnose the tumor type, doctors have confirmed it to be an ATRT. Treatment plans are currently being formulated, potentially including chemotherapy and a possible shunt placement.  

Understandably, Joseph's parents are feeling overwhelmed and apprehensive about the unknown path ahead.