The first indication that there was anything wrong was an offhand comment in the car on the way home from school. It was February. Jacob was in eighth grade.
“The vision in my left eye is kind of blurry,” he said.
We had just returned from a week skiing over winter break. He had appeared fine, falling a bit more than usual, but nothing alarming. Jacob had never been significantly ill. He played several sports, was active in community theater and speech team, an overall healthy 14 year old boy. There was absolutely no reason to think he had a life threatening illness.
The following two days after his comment were overwhelming, and at times were crystal clear. From first seeing the pediatrician, then the ophthalmologist, a specialist at a leading Boston hospital; and then phone call after phone call looking for a different answer… a better answer.
The reality was this: Uveal melanoma in a 14-year-old boy’s left eye that detached his retina.
Uveal melanoma is a rare form of melanoma, originating in the eye. According to studies at the National Institute for Health, ocular melanomas occur in 3-5% of all melanomas in the United States—roughly five in one million individuals will be diagnosed with this disease.
The options were few—proton beam radiation that could shrink the tumor but not allow sight in the eye and possibly lead to the spread of the disease, or enucleation (removal) of his eye ensuring that the encapsulated tumor was removed and that further spread was unlikely.
Jacob chose, with our support, enucleation and the placement of a prosthetic.
Fast forward 10 years. There had been no sign of spread in over a decade. High school, drivers license, winning performances in speech competitions, leading roles in high school, community, and college theater, a bachelor and master’s degree, work in professional theater in New York, and a host of family, friends and loved ones wherever he went.
And then, back pain which was addressed with exercise and physical therapy. We had no reason to believe that this was his melanoma returning. But tragically, after symptoms increased leading to CT scans, it was determined that the uveal melanoma had returned, spreading quickly to major organs.
Jacob, following a valiant, although brief, treatment of immunotherapy and radiation, succumbed to the disease six weeks after that diagnosis.
While there is no predictive behavior for this disease, those with lighter eyes and skin tone are more likely to be diagnosed. Exposure to UV rays from the sun is seen in 35% of those diagnosed, though it has also been found to be evident in 30% of individuals with no significant sun exposure at all. Eye protection is important but cannot always imply that the disease will not present itself.
A higher incidence of Uveal melanoma is found in white, non-hispanic males. The clinical presentation of those with this cancer are in their 60s and 70s, though, as we experienced, people of all ages are affected.
While uveal melanoma is a rare form of melanoma, any loss of life—as we lost our son, brother, cousin, grandson, and friend—is one loss too many. Continued research into the disease is crucial as there are no identified treatments specific to this form of melanoma. Please help us support this research and prevent the loss of more beloved individuals.