JT and I drove the hour long trip to Los Angeles on the same day as the Michael Jackson memorial, which of course was only a few miles away from the hospital. I was so worried about traffic, but that turned out to be unecessary. As we drove JT asked me if Michael was a boy or a girl. When I told him he was a boy, he said well then why did he look like a girl? How do I answer that?
So we reached the hospital and JT was a bit tense, he hates having his eyes examined, especially having them dilated. So of course I was tense as well and in full Momma Bear mode. The nurse who took us back profusely apologized for our relatively short wait, everyone was helpful and friendly. They took a full history on JT and communicated with me by typing on a computer in the room.
Dr. Borchert came in after a couple of hours and did not really speak to me until after JT had been examined, dilated, and then examined again. JT seemed to like him, and did not struggle with the drops at all this time! I was so proud of him, he took it like a champ. After the doctor and the residents shadowing him each peered into JTs eyes, he picked up a pen and wrote, and what he wrote in 4 minutes if more information than I have ever gotten in the last 3 years of biannual vision exams JT has had...
In JT's left eye is what appears to be a very small tumor called an astrocytic hamartoma. Dr. Borchert has seen these commonly in his NF2 patients. For now, it is not affecting his vision and is very small. It needs to be monitored as it could potentially grow.
JT has been legally blind in his right eye, possibly since birth. We call it his "bad eye" and he tells me it is broken all the time. Dr. Borchert is the first doctor to tell me he has what is called a combined hamartoma of the retina and RPE (retinal pigment epithelium.) This is incredibly rare, even in NF2. The rarity comes from the involvement of the retina as well as the epithelium from what I understood on Google! If you look closely at the photo in the center of the eye, you will see a large grey mass taking up most of JT's retina. It will stay the same size his entire life and continue to block 80% of his retina as it has since birth.
This seems like a lot of information, but technically it is just details on what I already knew. Neither lesion has grown and JT has adjusted very well to having limited vision.