The Winter Historical Clinical Trials Visit

Last time we went to the Casey Eye Institute, we added in some extra days for some Summer vacation time. This time around, we got there on Sunday afternoon which only gave us a day and a half to have some fun before the day of grueling tests began for Brendon. We decided to stay in downtown Portland this time so we could do some exploring by foot. There were some things downtown that we wanted to get off of our "to do" list. 

We stayed in the Marriott Downtown Waterfront and they were nice enough to get us a waterfront room. We could see the Willamette River right from our room. Plus, we were within walking distance of some nice waterfront restaurants. 

It was pretty dreary out those first two days but that didn't stop us. One thing on our "to do" list was to visit Voodoo Donuts, made famous by Anthony Bourdain's "No Reservations." So, we left the hotel and walked along the riverfront until we reached Burnside Street and made a left until we saw the large line of people waiting in the rain for donuts. Yes, we made it 3 thousand miles from Florida and one mile walking in the rain from the hotel so we weren't going to turn around now. We stood in line and took in the atmosphere. The atmosphere in Portland is quite different from home. Yes, we have our share of homeless but in Portland, they literally take camp under most overpasses, not just one or two people, but entire rows and rows of individuals, couples and families... In some cities, it might seem a little dangerous to walk by such places, but in Portland, everyone just seemed to get along. As we got closer to Voodoo donuts, things did get a little more strange. In fact, right next to Voodoo Donuts, there's a building with a sign that says "Keep Portland Weird." We finally got inside and ordered our donuts. It took everything in my power not to order the maple bacon donut. Now I regret that decision.

After Voodoo donuts, we walked through more parts of downtown and found a nice cozy coffee shop to just sit and do some people watching. Lance, my husband, and Brendon also managed to find a Microsoft store where they could get their game on for a little bit.

The next day is one that probably made the whole trip worth it for everyone. Brendon has never seen snow. Our plan was to go to Mount Hood Meadows and go skiing. We thought that plan was not going to work because of all the rain. Nevertheless, we started the drive to Mount Hood. We had heavy rain on many parts of the drive and even when there wasn't heavy rain, Interstate 84 was simply saturated and I got really scared driving through the many hydro slide areas with giant trucks everywhere. At one point, I was truly ready to just turn around but I knew I couldn't disappoint Brendon who was sitting in the back seat willing us to keep going. Well, soon, somewhere after travelling through the apple orchards along Oregon State Road 35, the rain turned to snow. We're from Florida. We don't know how to drive in snow. In fact, we weren't even sure if our rental car had traction tires (until we got out and checked. Luckily it did)

We put on the rental skis and went down that mountain. Snow hitting our faces. Lance, went down numerous times like a pro. Brendon and I took it more slowly and became quite intimate with the snow (sometimes face first). It was awesome though and I'm so glad we didn't turn around. By the time we started driving back, driving in the snow wasn't so bad. That night, we walked to the Melting Pot because Brendon wanted to experience eating underground. As it turns out, it's the same expensive Melting Pot anywhere you go but it was still fun. We were full and exhausted by the end of the night.

The next day was the Casey Eye Institute. All Day. Lance dropped us off at the office at 8 am. We immediately began with the Visual Field Test and continued with the Visual Acuity. The Visual Acuity test was different this time. Normally, when I watch Brendon take these tests, I know which letters he's going to be able to see and which ones he's not. This time, he wasn't able to see letters that he's been able to see in the past. Rather than let panic set in, I let the folks at the Eye Institute do their jobs. They tested his reading speed, contrast sensitivity and had him complete a questionnaire. We got to run down for a quick bite to eat while his eyes were dilating and then right back to more tests. He has a really bad astigmatism in his right eye so many of the tests are more difficult. On some, they actually just gave up and used the best information they could get. The electroretinogram (ERG) is one of the hardest tests. It comes in two parts. 

Before it can be given, we sit in a room that is completely dark for 20 minutes. I sit with him so he doesn't have to sit in the dark for that long. It's really kind of creepy in that room with zero light. Then, someone walks in with a red head light on directing Brendon to the first test where he has to wear electrodes connected to his eyes and stare at a screen while they get some measurements. This can take a while. Next, the lights come on and they move him to another test with the electrodes. This one, I got to watch from behind. He had to stare at this psychedelic screen for 8 minutes with each eye. Here's a short video

After the ERG, Brendon got his Photography, OCT exam. This is where they look at a photo slice of the retina. As usual, his results showed large schisis. I paid particular attention to this one because I wanted to see if there was a difference in his left eye (or his "good" eye). If so, maybe that's what caused the visual acuity to worsen. Of course, I couldn't really tell, It looked bad but I couldn't tell if it was worse than before. 

Next was the actual doctor visit. Here's where I would find out if his vision has actually worsened. After the doctor reviewed all of the test results and gave an exam, he confirmed that Brendon testes worse in his left eye this time. He also said that he didn't have enough history to tell if this was just anomaly. My hope is that it is just an anomaly. However, I've been coming to doctor's visits with Brendon since he was a baby and I haven't seen that kind of change. So, my fear is that this degenerative disease of his might be seeing some degeneration. It's probably time for a visit with Brendon's awesome doctor here in Jacksonville to confirm since he has a full history.

Either way, we got some really incredible news on this visit. It looks as if there is approval to go ahead and start gene therapy on a select group of patients this summer!!!! These patients are older than Brendon and have more severe vision loss. Basically, this is to see if the therapy is safe. The treatment will be invitreal vs. subretinal. With retinoschisis patients. a subretinal treatment is not preferred because of possible damage to the retina. Either, way, the treament will equal a needle in the eye and it is still unknown if it work or even whether or not it will cause more damage.