BABY WITH A MASSIVE FACIAL TUMOR ENDURES FAILED CHEMOTHERAPY — THEN A NEW MEDICINE SHRINKS IT BY 70%

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

Their son, Levy, was only a few months old when the unusual swelling first appeared.

Although the change seemed subtle from the outside, an ultrasound revealed something frightening: a very large mass was growing inside his face.

What followed was a medical journey that would take the family from Brazil to the United States in search of a treatment capable of saving their little boy.

A Small Swelling Hid a Serious Diagnosis

After discovering the mass, doctors performed further examinations and identified it as a sarcoma, a type of cancer that develops in tissues such as muscle, fat and connective tissue.

However, the medical team initially struggled to determine exactly which type of sarcoma Levy had.

Because the tumor was large and required urgent attention, doctors began chemotherapy.

For Monique, who was also a physician, understanding the seriousness of her son’s condition made the experience especially difficult.

Several Chemotherapy Treatments Failed

Levy endured multiple rounds of chemotherapy, but the treatment brought serious complications.

He experienced episodes of fever associated with dangerously low white blood cell counts and developed sepsis, a potentially life-threatening response to infection.

Despite changes to his chemotherapy medications, the tumor was not shrinking as doctors had hoped.

His mother began questioning whether continuing the same approach could help her son.

The family desperately needed another option.

Strangers Helped His Family Travel Thousands of Miles

In May 2018, doctors suggested that Levy be evaluated at a cancer center in Houston, Texas.

Although both parents were employed, paying for international medical treatment was beyond their means.

They shared Levy’s story on social media.

People responded with generosity, helping the family pursue treatment in the United States. Members of the Brazilian community in Houston even helped arrange accommodation.

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

A Genetic Discovery Changed His Treatment

Doctors identified an NTRK gene fusion associated with Levy’s tumor.

This discovery made him eligible for a clinical trial of larotrectinib, an oral medication designed to block abnormal TRK proteins that drive certain cancers.

The trial was led by pediatric oncologist Dr. Theodore Laetsch, who was then working in Dallas.

Unlike Levy’s previous chemotherapy, the new treatment targeted a specific genetic change within his tumor.

His family hoped it could succeed where earlier treatments had failed.

After Three Months, the Tumor Had Shrunk by 70%

The response was remarkable.

According to his mother, Levy’s fever resolved, and he was once again able to enjoy activities such as visiting the park.

Within one month, the tumor began shrinking.

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

For a family who had watched their baby endure repeated chemotherapy complications, the improvement represented an extraordinary turning point.

Five Years Later, His Hospital Shared an Encouraging Update

Levy continued receiving treatment while his family traveled between Brazil and the United States.

When Dr. Laetsch joined Children’s Hospital of Philadelphia in 2020, Levy continued under his care.

In June 2022, Levy stopped taking larotrectinib and entered a period of medical observation to determine whether his remission could be maintained without the medication.

By the hospital’s 2023 report, Levy was five years old, and his case had become an important example of how precision medicine could help children with rare cancers.

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

For Gustavo and Monique, the journey began with a small swelling on their baby’s face. It became a story of persistence, community generosity and a medical discovery that offered their son a different future.

Source: Children’s Hospital of Philadelphia, “Precision Medicine for Infantile Fibrosarcoma: Levy’s Story” and “Case Study: Precision Medicine for Infantile Fibrosarcoma,” March 15, 2023.