His Eye Began Bulging at Just Seven Months Old — Then Doctors Discovered a Rare Cancer Behind It
His Eye Began Bulging at Just Seven Months Old — Then Doctors Discovered a Rare Cancer Behind It
For the first seven months of his life, baby JR appeared to be developing normally. But during a family vacation, his mother, Holly, noticed something unusual: one of her son’s eyes seemed to be drifting.
At first, the family wondered whether he simply had a lazy eye. Holly, however, felt that something was wrong.
By the time she and her husband, Brandon, took JR to their pediatrician the following week, his eye had begun protruding.
Medical examinations soon revealed a frightening explanation: a large cancerous tumor was growing behind his eye.
A Small Change That Revealed a Serious Illness
JR underwent blood tests, an examination by a neuro-ophthalmologist and an MRI scan.
The imaging showed a substantial mass near his eye. A biopsy confirmed that the growth was malignant.
Initially, doctors believed JR had rhabdomyosarcoma, a type of cancer that develops in soft tissues.
His family immediately began navigating a treatment journey they had never imagined for their baby boy.
Three Months of Chemotherapy Without Improvement
Doctors in North Carolina started chemotherapy, with radiation therapy planned for a later stage.
Because the radiation would need to target an area close to JR’s eye and other sensitive facial structures, specialists recommended proton therapy.
His family was referred to Children’s Hospital of Philadelphia (CHOP), which had an established pediatric proton therapy program.
But after three months of chemotherapy, another scan revealed that the tumor was not responding.
The family urgently needed a different treatment approach.
A Second Biopsy Changed His Diagnosis
At CHOP, pediatric oncologist Dr. Rochelle Bagatell reviewed JR’s medical records and examined him.
Further testing revealed that the original diagnosis was incorrect.
JR actually had ectomesenchymoma, an extremely rare, fast-growing cancer involving nervous system or soft tissues.
The new diagnosis meant his treatment needed to become more aggressive.
His care plan included more than 100 doses of chemotherapy and 28 days of proton radiation therapy.
He Celebrated His First Birthday During Cancer Treatment
Holly temporarily moved to Philadelphia with JR, staying at a nearby Ronald McDonald House while Brandon visited on weekends.
Much of JR’s early childhood unfolded around hospital appointments, treatment sessions and medical staff.
He even celebrated his first birthday while receiving proton therapy.
Before Christmas 2013, JR completed his radiation treatment and returned to North Carolina to continue chemotherapy.
By June 2014, he had finished treatment. The remaining mass behind his eye was considered scar tissue rather than active cancer.
A Difficult Decision to Remove His Damaged Eye
Although JR’s cancer treatment was successful, radiation had damaged structures in his affected eye.
By March 2017, he had become completely blind in his left eye.
Because the eye was also painful and sensitive to light, doctors removed it and fitted JR with a prosthetic eye the following April.
His mother reported that he was happier afterward.
In CHOP’s published update, JR was four and a half years old and had been in remission for three years.
He enjoyed riding his bicycle, playing with his younger sister Charlotte and imagining that he might one day drive an ice cream truck.
His journey demonstrates both the possibilities and the long-term challenges of treating rare childhood cancers near delicate structures such as the eye.
Source: Children’s Hospital of Philadelphia — Ectomesenchymoma: JR’s Story.
