Before JohnJohn's diagnosis, we had never even heard the word retinoblastoma. This cancer is scary because it's rare (approximately 250 cases per year in the US), because it occurs primarily in children under the age of 5, and because there are only a select group of doctors and hospitals that know and understand how to treat it.
But we are lucky because it is treatable, and there have been incredible advancements in the treatment options within the last decade. Just over 10 years ago, the most effective, and pretty much only, way to treat retinoblastoma was through enucleation (removal of the eye). Sometimes this is still the best treatment option based on size or stage of the tumor(s). Systemic chemotherapy and radiation were also commonly used in different combinations.
Then in 2006, Dr.’s Abramson and Gobin developed a method of treatment that delivers chemotherapy directly to the eye via an intra-arterial procedure. This game-changing treatment has been remarkable in saving vision, and eyes, in patients that qualify.
We were fortunate to have a very supportive network of family, friends, and colleagues that made it possible for us to seek cross-country treatment with Abramson and Gobin at Memorial Sloan Kettering Cancer Center in New York. But even with the financial and emotional support this journey has not been easy, it’s expensive, time-consuming, and physically draining.
JohnJohn completed his IAC treatment for his one large tumor in September 2018. Since then he has received laser treatment for 4 additional small tumors in his other eye. Even though we are in a good place right now, there are still immediate and lifelong risks.
He has eye exams under anesthesia (EUA's) every 4-6 weeks until age 5 to check for additional tumors, bi-annual MRI's to make sure the cancer has not spread beyond the eyes, and will be monitored for the rest of his life for a handful of other related cancers. As he grows he will also need PT/OT to help with his development and vision impairment. Because of our experience, we want to do our best to pay it forward and support other families who are facing the same struggles.
Our family members founded Eye Fight for Kids in JohnJohn's honor, to provide financial assistance to families with a child or children who are undergoing treatment for retinoblastoma. Funds will be given directly to selected families to offset the medical, travel and personal costs incurred while in treatment.