Updated: Feb 2
I am a mother of two very active teenage boys.
My story begins on December 24th when my 13 year old son, Nate, and I together received the news he had an Ocular Melanoma (a rare cancer of the eye). We hear melanoma and think skin cancer--- this was not the same type of melanoma. It was much more severe. It is a mother’s worst nightmare to hear your son has a terminal disease. It affects not only the patient but the entire family as well.
Prior to a routine optometrist appointment there weren't any signs nor symptoms that would suggest anything was wrong. However, upon examination, our optometrist said that it appeared my son had a freckle on his eye and wanted a specialist to take a look at it. The doctor suggested this as a precautionary note, just to be safe. Within 24 hours, his file had been shared with multiple physicians and specialists who resided at several hospitals and clinics. We were immediately scheduled with a specialist to look into this freckle further.
Two days later, Christmas Eve, after multiple tests and several hours with the doctors, our specialist Dr. Goldbaum walked into the room and, as compatiently as he could, announced the horrifying news: ”Your son has cancer of the eye and without treatment will have a life expectancy of two to eight months. Even with treatment, there is a 90% chance of it metastasizing to the liver, lungs or brain.” He said he would see us in a few days to discuss the options of his treatment...Merry Christmas.
Absolutely nothing will prepare you for the day you or a loved one, particularly your own child, has been diagnosed with a terminal disease. While disbelief and fear gripped us, we knew decisions had to be made going forward. There is of course the obvious trepidation regarding what those decisions would mean to our family and our friends. We knew we had choices to make and, ready or not, had to be prepared to deal with the consequences of those choices. While I wanted to grab my son and fall to the floor crying, I could not do so. We had to make a decision. As individuals and as a family, without really knowing it, we chose to be strong and begin our journey full of hope for a cure.
The next few weeks were a whirlwind of appointments, hundreds of tests, and information rapidly fired at us. Answers were needed immediately. Treatment options and clinical trials...I even recall being asked if I wanted to have a test done that would give us a 99% accurate diagnosis with regard to the fatality of the tumor. It was all a little overwhelming to say the least, but we carried on.
Treatment began in February with the first of several surgeries. Radiation, chemotherapy, steroids and many other treatments were administered throughout the first year.
This type of cancer doesn't usually occur in someone Nate’s age. This disease tends to affect the elderly. As a consequence treatment options based on history were limited. Thankfully, he responded well and adjustments were made each month to help personalize the treatments according to his specific medical requirements. Ongoing injections and treatments are now part of Nate’s everyday life. The dormant tumor remains attached to the optic nerve. Removal of the tumor would require a removal of the eye itself. An option we may be forced to consider in the future.
Although you cannot tell, he has lost almost all sight in his right eye and does not have any depth perception. But these medical challenges have not stopped him from living a normal life and doing what he loves most. We have adjusted and Nate has adjusted. He continues to play in sports, particularly basketball and being around his friends. Academically, Nate maintains above a 4.0 GPA and plays Varsity basketball for his high school. He was even determined to get certified to scuba dive which required his physicians to work through a great deal of trial treatments to find a balance in ocular pressure and the depth of the dive.
Nate’s determination and dedication in beating this cancer is astonishing. Through it all, he doesn’t complain about the long hours in the doctor office, the surgeries, or the endless tests being run on him. He chooses to be hopeful and strong through his journey. He is an inspiration to his friends and his family. His infectious smile continues to spread throughout the clinics and hospital. The doctors and nurses love seeing Nate and always come to his room to visit when he is there.
It has been nearly four years since his diagnosis and he is getting ready for a new round of tests and a scan hoping to hear all is clear. He is one determined young man who is going to live his life as he wants. Respecting the need for caution, he is not going to let life dictate the terms.
Written By Kerry Blum