Mom Notices Her Baby’s Cheek Looks Slightly Swollen — Doctors Discover a Rare Tumor Growing Inside His Face

When Monique noticed that one side of her baby boy’s face looked slightly swollen, she never imagined the discovery would lead her family on an international medical journey.

Her son, Levy, was only a few months old when doctors discovered a large tumor growing inside the left side of his face.

What initially appeared to be a subtle physical change turned out to be a rare form of childhood cancer that would challenge his family and medical team for years.

A Small Change That Revealed Something Serious

Levy lived in Brazil with his parents, Monique and Gustavo, when his mother first noticed the swelling.

Concerned about the unusual appearance of his cheek, the family visited their pediatrician, who ordered an ultrasound.

The examination revealed a large mass inside the baby’s face.

Initial testing identified the tumor as a sarcoma, but doctors were unable to determine its exact type immediately.

Because the situation required urgent attention, Levy began chemotherapy while his medical team continued investigating the disease.

Months of Treatment Without the Results They Hoped For

The early stages of Levy’s treatment were extremely difficult.

He experienced serious chemotherapy-related complications, including sepsis, a potentially life-threatening response to infection.

Doctors adjusted his medications and attempted additional treatment cycles, but the tumor was not responding as expected.

For Monique, who was also a doctor, watching her young son endure repeated treatments without meaningful improvement was devastating.

By May 2018, the family knew they needed to explore another possibility.

A Journey From Brazil to the United States

Levy’s family was advised to seek specialized treatment in Houston, Texas.

However, traveling abroad and paying for medical care presented enormous financial challenges.

After his parents shared his story online, people came together to support the family. Members of the Brazilian community in Houston even helped arrange accommodation.

At 11 months old, Levy finally received a more specific diagnosis: infantile fibrosarcoma, a very rare tumor associated in his case with a genetic alteration involving TRK proteins.

This discovery opened the door to a different treatment approach.

A New Medication Changes His Medical Journey

Levy qualified for a clinical trial involving larotrectinib, an oral targeted therapy designed to block abnormal TRK activity that drives certain tumors.

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

Unlike his earlier chemotherapy experience, Levy responded remarkably well to the new medication.

Within one month, doctors observed that the tumor had begun shrinking.

After three months, it had decreased in size by approximately 70 percent.

His mother also noticed a significant improvement in his everyday life. Levy was no longer experiencing the same severe complications and could enjoy ordinary childhood activities, including visiting the park.

From a Frightening Diagnosis to a New Chapter

Levy continued receiving specialized care as his family traveled between Brazil and the United States.

When Dr. Laetsch joined Children’s Hospital of Philadelphia in 2020, Levy’s family continued his care through the hospital’s specialized oncology programs.

According to CHOP’s published case study, Levy stopped taking larotrectinib in June 2022 and entered a period of medical monitoring to determine whether his remission could be maintained without treatment.

At the time of the hospital’s report, he was five years old.

His experience also contributed to research supporting the development of targeted treatments for patients whose tumors carry specific genetic alterations.

For Monique and Gustavo, their son’s journey began with a small change in his cheek and became a story of persistence, community support and medical innovation.

Source: Children’s Hospital of Philadelphia (CHOP), Precision Medicine for Infantile Fibrosarcoma: Levy’s Story; Case Study published March 15, 2023.