Written by his mother, Tiffany.
“Our son Tobin was young when I first noticed that his eye would have a yellow glow in it when I would take his picture with a flash. He was about 3-4 years old. I said something to my husband Curtis about it. He said take him to get it checked if you feel like something is wrong. I had watched an episode of Oprah that had a story of a mother who figured out her child had cancer because of the pictures she had taken that showed that same yellow glowing eye. I took him to the eye doctor in our small town. Tobin couldn’t read yet so he was hard to have checked. He could see the shapes and did as well as he could for his age. The doctor didn’t see anything wrong. I was relieved for the moment.
Tobin started school and the school would perform eye exams for the students once a year. A letter was sent home that I needed to take him to an eye doctor and that they think he may have problems seeing. I didn’t think much of it. He had a doctor’s appointment with our pediatrician for something else and she always checks his eyes and ears so I didn’t go out of my way to make a special appointment. My husband took him and when he was doing the eye exam she told him to cover his right eye and look at a chart. He told her he didn’t want to. If you knew Tobin this wasn’t anything abnormal. He is stubborn and when he doesn’t want to do something he won’t change his mind. My husband tried to make him do what he was told and he refused and would not budge. They moved on with his appointment and came home. When my husband told me what he did I was mad that he acted like a brat at the doctor’s office so I talked to him. I told him from now on if the doctor asks you to do something you are to do it. He was sorry of course and promised to be a good boy from now on in the doctor’s office.
The next year the same thing happened with the school check up. I blew it off. I knew his vision was fine he never complained about anything. He could read, write, do his colors, and all the other normal things. I didn’t bother following up.
So in the second grade another bad eye check at school and the pictures with the yellow glowing eye was making me really nervous. I kept thinking about it. Every time I would take a picture and that same eye would look that way it made me mad and frustrated. I took him back to the eye doctor in town. He told me I needed to go to a pediatric specialist. He could see a mass in the back of his eye and said we needed to see someone that knew more about it. We made an appointment at the pediatric eye doctor in Owasso. They thought he may have Toxoplasmosis, a disease where a parasite from cat feces gets in your system and can get into your eyeball (We didn’t have a cat). So I was confused as to how this could have happened. We went to another specialist in Tulsa. He gave the same diagnosis. He tells me that Tobin will not get his vision back. Tells me there is nothing we can do. I get very upset. I try to keep listening to what he is saying but the tears just start coming down my face and I can’t stop it. The doctor isn’t very compassionate. He tells me that I can’t be upset. I don’t remember much of the conversation. I stopped listening.
I wasn’t satisfied with what I had been told. We didn’t have a cat. My mom did but he wasn’t around it enough to have been in contact with the animal’s feces? I couldn’t figure it out but I knew something wasn’t right. I started doing research online about eye facilities or research centers close to us that could maybe give us another opinion. This would be our fourth opinion. I found Dean McGee in OKC. It said they do research and have experimental stuff so I wanted to go there. I called and made the appointment.
At the appointment we had his eye dilated again, which he hated, and they also had to inject him with dye so that everything would show up better in the pictures. They had a machine that they said was fairly new that would give us a picture of his entire eye all the way around. He didn’t like being still and having to push his face so hard to the machine. He sat on my husband’s lap for awhile and that helped during the pictures with the big machine. After the pictures we looked at the images of his good eye and the eye that had problems. I was sick to my stomach. There was a giant mass in the pictures. It looked horrible. They said they were going to take the test results and consult other doctors. They would get in touch with us. It could be cancer or Retinoblastoma, it could be Toxoplasmosis, but they were not sure.
We went back to Tulsa and didn’t talk about it a whole lot till that night when we went to bed. I cried trying to lay there and go to sleep. I couldn’t help it. I tried to be quiet but my husband heard me. We talked about what we would do if it was cancer. What was going to happen with how we live? We both work. How was this going to affect our other two older kids? Why was I so stupid and not go with my gut when I first seen his eye in the pictures back when he was four years old. I was upset with myself. I for sure blamed myself, and if my son had cancer and I had let it go on this long I was never going to forgive myself. It was a rough week waiting for the doctors to call us. They finally called and I was at work. They let me know that they didn’t believe it was cancer. They wanted him to come back. So we made another appointment to go back to OKC. I was relieved but scared for what they were going to figure out. In OKC this time they said they thought it was Coats Disease. They said it looked like it had stopped backing up fluid in his eye. But the damage that had already been done was permanent and he wouldn’t get vision back. Tobin didn’t seem to care or even pay attention to anything the doctor told us. We would make an appointment for 3 months from then and see what the status was on the fluid in his eye.
Tobin went back to school and told his teacher and classmates that he had some bad news and that when he was gone from school he went to the doctor and they told him he is going blind. He was just in the second grade and I guess this is what he thought the doctor was saying. His teacher contacted me to find out what was going on. I laughed and said well he’s not 100% correct with what he is telling the class. I explained to her that he cannot see out of one eye and that we were being seen by specialist in OKC but his other eye was problem free and 20/20. He was not going blind so the class didn’t need to worry.
That was 2012. Every 6 months we go to OKC to check up on his eye. So far there had been no change. It doesn’t hurt him and everything appears to be as normal as it can be. We go back this July 2014 for another evaluation. I read that there are some cases where the disease reverses by itself. He will never see out of that eye. I pray that he does not advance to retinal detachment. Tobin plays multiple sports baseball, football, and basketball. He has protective eye wear for these sports. His football helmet has a clear shield attached to the front. He is an above average student. I never want to have to tell him he can’t do something for fear of what can happen. I want him to go through every day life like everyone else. In the back of my mind I know that if anything happens to his non Coats eye that he will be blind. It’s hard to come to that realization. I just want to do everything I am able to do to keep his eye stable. I know that God will take care of the rest.”