Baby Boy’s Facial Tumor Would Not Respond to Chemotherapy — Then a New Treatment Changed His Life

When Monique and Gustavo noticed a small swelling on the left side of their baby boy’s face, they had no idea how dramatically their lives were about to change.

Their son, Levy, was only a few months old. At first, the swelling seemed subtle, but an ultrasound revealed a large mass hidden beneath the surface.

Further examinations showed that Levy had a rare cancer. His parents soon found themselves fighting to save their baby while searching for treatment beyond their home country of Brazil.

A Small Swelling Concealed a Large Tumor

Monique, who is a doctor herself, understood that the ultrasound findings could indicate something serious.

A biopsy confirmed that the mass was a type of sarcoma, although identifying its exact form initially proved difficult.

Doctors started chemotherapy, hoping to stop the tumor from progressing.

Unfortunately, Levy’s condition did not improve as his family had hoped.

Chemotherapy Brought Serious Complications

Levy underwent several chemotherapy regimens, but the tumor remained unsuitable for surgical removal.

Meanwhile, treatment brought frightening complications, including episodes of fever associated with dangerously low white blood cell counts and sepsis.

His parents were running out of options.

In May 2018, doctors recommended that Levy travel to a specialist cancer center in Houston, Texas.

But the cost of receiving treatment abroad was beyond what his family could afford.

Strangers Helped Bring Their Baby to America

Monique and Gustavo shared their son’s story on social media, hoping to find a way forward.

The response was extraordinary. Members of the Brazilian community in Houston helped the family secure an apartment while Levy underwent further evaluation.

At 11 months old, Levy finally received a more precise diagnosis: infantile fibrosarcoma.

Doctors also identified a genetic alteration known as a TRK fusion, which was driving the growth of his cancer.

That discovery opened the door to a different kind of treatment.

A New Medication Produced a Dramatic Response

Levy qualified for a clinical trial of larotrectinib, an oral targeted therapy designed to block the abnormal TRK proteins helping his tumor grow.

The trial was led internationally by pediatric oncologist Dr. Theodore Laetsch.

For Levy’s family, the change was remarkable.

His mother reported that the complications they had experienced during chemotherapy eased, allowing him to enjoy ordinary childhood activities again.

Within one month, the tumor began shrinking.

After three months of treatment, its size had decreased by approximately 70 percent.

For parents who had watched their baby endure months of unsuccessful chemotherapy, the improvement brought tremendous relief.

From a Frightening Diagnosis to a New Childhood

Levy and his family eventually returned to Brazil while continuing follow-up appointments in the United States.

During the COVID-19 pandemic, medication was sent to their home and medical consultations were conducted remotely.

When Dr. Laetsch joined Children’s Hospital of Philadelphia in September 2020, Levy’s family continued his specialist care through CHOP.

His story became an example of how precision medicine can offer new treatment possibilities for children with rare cancers, particularly when conventional chemotherapy has not worked.

Although a dramatic reduction in tumor size does not automatically mean a permanent cure, Levy’s response gave his family something they had desperately needed: a chance to watch their little boy enjoy childhood again.

Sources: Children’s Hospital of Philadelphia — Precision Medicine for Infantile Fibrosarcoma: Levy’s Story; Case Study: Precision Medicine for Infantile Fibrosarcoma, March 15, 2023.