Tony's Story

Tony's story

This is a picture of Tony when he was very young.

      The above picture shows the "Cat-eye" reflex. When we normally take pictures we typically get "red eye". Since Tony has a tumor in his eye, instead of seeing the red of the retina, sometimes we see a reflection of his tumor.
     When my wife and I decided to have a baby, and got pregnant, we knew that our child would have a chance of having Retinoblastoma. (my wife had Retinoblastoma as a child.) So before Tony was even born, we had an appointment to have his eyes checked.
     Even though we knew we had a high chance of him getting Retinoblastoma, nothing could have really prepared us for the journey ahead. When Tony was 2 and a half weeks old, three days after we were told Tony had a tumor on his retina, we were going to our first EUA (Examination Under Anesthesia). That first EUA was just to get a close look at the tumor, and assess what the best plan of action would be.
     After his first exam, Dr. Haik told us that the best (safest) thing to do, would be to remove the eye. Since there was only one tumor, removing it all together would reduce the risk of the tumor spreading. Another option would be to treat the tumor, and try to kill it. Well it's a good thing we decided to go with the second. Not long after treating the first tumor, there were other tumors forming. Thankfully we've been successful in keeping his eyes where they belong(in his head).
     A couple of days after the initial EUA we admitted Tony into the hospital. Dr. Haik took him to surgery and inserted a Radioactive Plaque. The "Plaque" was nothing more than a gold shield with Radioactive "Seeds" (I133) in it. The plaque was sewn onto the back of his eye after cutting a few muscles to accommodate its size. It stayed sewn for 5 days, when it was then removed. The gold shielded the brain and surrounding bone from the radiation. The eye, retina, and tumor are the only tissues receiving any substantial radiation.
     During the time we spent in the hospital with the implant sewn in place we kept telling ourselves "Well, he has one tumor, we'll get it taken care of, and hope it's the end of the problems." Well after that implant was removed we found another tumor. Luckily it was small enough to be treated with Laser.
     For a period of about a year and a half, it seemed every time we went to have an "EUA" we were leaving with bad news. If we didn't have a new tumor, one of the older tumors had become active again. We would have Laser treatments, Cryotherapy, and a total of two plaques before the tumors stopped growing.
     To shorten the story a little, Tony has had about 9 tumors. He has had the Radioactive implant twice (once in each eye). The others were all treated with either laser, or cryotherapy.
     Tony has no vision in his left eye, and only peripheral vision in his right. The first tumor he had was directly in the Macula. The Macula is the region of our eye that we use for reading. It is our "Central Vision". Because of this first tumor, he cannot see "Centrally" out of his right eye. Then, later down the road, he began having tumors growing in his left eye. It was one of these tumors that, while being treated with Cryotherapy, caused him to loose all vision in his left eye. Just recently Tony's vision was described by our doctors as: "No light response in the left, and 20/200 - 20/400 in the right".
     Now Tony is almost 3 years old. He runs, jumps plays just like any other child. Tony also attends an "early intervention" school. The school is designed for very young children with physical and mental handicaps. We feel that this school is the best thing that we could have ever wanted for his early development. The school Tony attends now is part of LSU Medical Center. It's called HDC (Human Development Center). It's located in the New Orleans area, and will have a home on the web very soon. For a preview of the web site for HDC click HERE. We are told that he'll be allowed to stay there for the remainder of this year and then he will "graduate" and go to Harahan Elementary. There his "blind" training will continue. We have high expectations for him, and his future.
     Just recently Tony was evaluated at his school. The evaluation is designed to see how Tony is developing mentally as well as physically. I'm proud to say that his preliminary results show that Tony is "age appropriate" in most areas, and slightly advanced in a few other areas. That means that he does almost everything that a child his age does, and some things that they would expect an older child to do.
     I think the main thing that we, as well as other parents, need to keep in mind is: our children are just like all other children. They may have a few special needs, but they are children just the same. Tony has really surprised my wife and I. He is a little developmentally delayed in that, he can't maneuver like other children, but he has shown us that where he lacks in some physical abilities, he makes up for in personality and mental ability.

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