Byron is a sweet, loving, and sociable little 20 month old boy. He loves to observe and study things with his eyes, faces especially and can just melt your heart with his big blues. At about 4 months old we noticed that he was not developing as he should be. He wouldn't use his arms or hands and he couldn't sit up very well. We had the Children's Resource Center do a developmental screening on him and he was definitely not up to his milestones. From there, we just used the term "low muscle tone" for his developmental delay. After talking to our primary doctor about his delay, he sent us to a pediatric neurologist who stated there was no visible signs of anything he could diagnose. He referred us to a Geneticist who did an exam and also said there were no visible findings. He ordered a lot of blood tests and when those finally came back, there wasn't anything of note.
The next step was a brain MRI to see if there was anything in the brain that was causing a delay. We were apparently set up to see the pediatric neurologist in February and I was not made aware of the appointment until the day before and I had other things planned and thought it could wait. So we rescheduled for May with that doctor. But, we were set up for a Developmental/Behavioral doctor March also. I was very skeptical of going to this doctor because we knew he didn't have any behavioral problems and thought he would just be diagnosed with autism which we knew he did not have. Come to find out, she couldn't see any reason why he was developing slowly and had low muscle tone either. However, she did think we needed to do the MRI and so therefore set it up for the end of March.
Off we went to Billings, MT to get the MRI done. It was a long process and if felt like we were in the hospital for an extremely long time and were ready to just go home. As we were finally walking out to the car to go home, we got a phone call from one of the pediatricians who had taken a look at the MRI. She told us that there was a mass behind his right eye that needed to be looked at by a pediatric ophthalmologist immediately. This doctor was going to be out of town the next week but wanted to take a look at him that day, and 2:00 was the best time. When we finally found the place we were needing to go, it seemed like that we would never see the doctor and were really just about ready to leave because we needed to go home and thought that this was just a joke, there wasn't anything wrong with his eyes or vision, we had already had him looked at when he was younger. In the back of my mind though, I thought, we need to wait, what if this was a tumor that needs to be taken care of.
We finally got to see the doctor and upon initial examination the doctor said he looked fine, but wanted to dilate his eyes to take a closer look. So, there we waited for 20 or so more minutes. When we were called back again the doctor couldn't really get a good look because Byron was definitely not wanting anyone to mess with him anymore. But he was able to get a good enough look and from the MRI he concluded that Byron has a Retinoblastoma. He said, you probably don't know what that is or have never heard of it before. We both said no and let him explain. He said, retinoblastoma is a "malignant cancer of the eye."
Cancer....there that word was again popping up in our lives. How could this be? Why now, there are so many other things going on that we have to deal with? Our brother-in-law just got diagnosed with cancer, why us too? These were some of the many questions and thoughts going through our mind. The doctor told us he wanted us to go to Denver as soon as possible.
To Denver we went. Before we went there, the doctor gave us some options of treatment. He said if he looked and it was small enough he would just take a laser to it and get rid of it. Another option would be to do regular chemotherapy treatments. Then there was another option of sending us to New York or Philadelphia to do a new treatment where they inject the chemo straight into the eye. If it was too large, it would mean loss of the eye. We were hoping it would be small. When I was waiting for the doctor to come out of the procedure, it didn't take long and I knew it wasn't small enough to take care of then. He came out and said that he had a class C size retinoblastoma on a scale of A-E. His recommendation was to send him to Philadelphia for the specialized treatment.
We do not know, however, if this is linked to his developmental delay, but they will also be doing more testing to figure this out too.
Now about 3 weeks later, we are not going to Philadelphia, but we are going to Houston where they will do the same type of treatment. The treatments will be once a month for at least 3-6 months minimum. One round of treatment lasts for 4-5 days. This type of cancer is very rare, only 300 children per year are diagnosed with it in the United States. When caught and treated in time, it is curable, but still very costly as there are only 4-5 medical centers that do this specialized chemo treatments.
