RBAZ isn't just an organization, we are a family.
I was diagnosed with RB at the age of 15 months, February 1980. My parents had noticed a copperish-red tint to my pupil when they would take photographs. One day while my father was holding me up he noticed he could look through my eye. My mother took me to our family doctor (we lived in a very small town in Rural Utah, so we didn't have access to Pediatricians or Ophthalmologists) with her concerns about my eyes. The Doctor snapped his fingers in front of my face and I blinked so he said I was fine. But my mother and father still had concerns and sought out a specialist in Salt Lake City Utah. He looked at me and said I needed to go see Dr. Thomas Williams immediately. So my mom took me to Dr. Williams and he did an exam and diagnosed me with bilateral RB and said I needed surgery the next day or I would die in a week.
Even though I had tumors in both eyes, only my right eye was enucleated. It was incredibly traumatic for my parents. They had never even heard of Retinoblastoma and felt very overwhelmed at how fast everything happened. I spent the next few years in and out of Primary Children's Hospital in Salt Lake City Utah. They didn't do chemotherapy then because they didn't think it would be effective. Laser treatments were the newest thing and that's what they did.
I am now approaching 33 years old and have been cancer free for 30 years. Because of the bilateral RB I knew the risk of passing the gene onto any children I would have, but my husband, Israel and I wanted children very much so we took the risk. We now have 3 children. All of them were screened immediately after birth and frequently from then on. Camila, our first born, also had RB (read her story here). Rebeca is almost 4 and Benjamin just turned 2. Both are still being seen by Dr. Mark Salevitz and have had good clean eye exams.