To See or Not To See?

Derek and I flew to Detroit, MI on Wednesday for a follow up appointment with his retinal specialist, Dr. Trese. We've been seeing him for almost 8 years, and he knows Derek's eyes better than anyone else in the world. Also, he is one of, if not the, best retinal specialist specializing in Retinopathy of Prematurity in the world. We have met people from Mexico, The Netherlands, and Italy who have flown to Detroit just to see him. The least I can do is fly from Kansas City. We use Angel Flight -- an organization where pilots donate their time, plane, and gas to fly people for medical appointments -- for these flights. The best part is that the pilot we always use is my dad. Everybody wins: Derek gets to his appointment, Derek gets to fly (which he LOVES), I don't have to pay for it, I get to catch up on my sleep on the plane (hee, hee), my dad can claim the gas expense as a deduction since it's a charitable contribution, and my dad has an excuse (as if he needed one) to be off in the wild blue yonder. Dad is also a certified flight instructor, and one of his students actually flew the plane this time with Dad in the right-hand seat.

We took off a little after 8:00 and landed at Detroit City Airport a little after 12:00. It was a 3-hour flight with a one-hour time change. The student made a great landing despite the heavy cloud coverage and rain in Detroit. We ate at the same Subway that we eat at every single time, and got to our 2:00 appointment with time to spare. Dr. Trese got a pretty good look at Derek's eyes, and everything seems to be unchanged. At this point, "no news is good news." We are just trying to keep Derek's eyes healthy and viable for future technologies. The worst thing that can happen now is for one or both of Derek's eyes to stop growing, shrink, and eventually die. If that happens, then there is no hope. As long as his eyes hang in there, there is hope. Right now, Derek's left eye (the good one) has a large area of attached retina, but it is very thin and avascular, and therefore doesn't work right. Derek's right eye is cloudy due to a swollen cornea that he's had for a few years. Therefore, Dr. Trese can't see all the way to the back of the eye to know if there is any attached retina. Often when the retina is detached, it will "float" up to the front of the eye. Dr. Trese can only see about the front 1/4 of Derek's right eye, but he doesn't see any retina in that part, so that's something. When we have done VEPs (Visually Evoked Potential) in the past, they show some brain activity in response to his right eye, so Dr. Trese believes that he at least has something attached back there. A VEP is where they attach electrodes to the back of Derek's head, right where his occipital lobe is. The occipital lobe is where vision is processed. Then they cover one eye, shine a strobe light, and record the brain activity for about 10 minutes. Then they repeat this with the other eye. Finally, they do this with both eyes open. This test cannot deliver a false positive or a false negative. If there is brain activity, then he saw something. The stronger the response, the greater the vision. We've done 3 of these in Derek's life, and each time Derek's eyes have seen something, with the left eye having a greater response. A corneal transplant would probably take care of the cloudiness, but since Derek is blind, he's not exactly a candidate. Per Dr. Trese, we're going to try some new drops for about a month, and if we see improvement, great. If not, we'll stop them.

Derek's next appointment will be in 6-8 months, and this one will be an exam under anesthesia (EUA). For this, we'll fly up on a Sunday, spend the night, and report to the hospital some time on Monday. While Derek is under anesthesia, they will get a really good look at his eyes and be able to check his pressures as well. Many kids with ROP develop glaucoma, so that's why it's so important to check his pressures periodically. So far, his pressures have always been perfect with the help of his current eye drops. The actual exam only takes about 15 minutes, but we're at the hospital for about 3-4 hours. Then we'll fly home that night. We fly commercial for Derek's EUAs, and since his insurance covers travel expenses it won't hurt our budget (yea!). For the last couple of years, Derek has had an EUA in October, and an office visit in April. Since Derek is getting older and more compliant in the office, we were able to do 2 office visits before doing another EUA. Small victory.

After our appointment was over, we drove back to the airport, and took off. We had a roller coaster moment as we were ascending, when the student pilot had to rely on his instruments rather than his vision (due to the clouds) to determine the plane's position in the air. After some time and instruction, the student leveled out the plane, and I was able to resume reading my book. Other than that, we had an uneventful flight home, and landed at about 8:00. It was a 12-hour day, but that's better than a 13-hour drive one way!

As for the future technologies, stem cells have been in the forefront of possibilities for Derek. Dr. Trese has one hand in the office and one hand in the research, so he knows exactly what's going on. Unfortunately, the stem cells are going to take some more research and won't be ready in the 2-5 years that Dr. Trese had thought. What's happening is that when the stem cells are injected in the retina, they are not integrating with the retinal cells to regenerate. Instead, the cells are dividing on top of themselves, creating a lump -- a benign tumor. They are experimenting with trying to "train" the cells (whatever that means), and that has shown better results, but still not what we want. Another possibility is the micro chip. This is implanted in the retina, and a processor is implanted in the brain. Between the two, they can send the visual message to the brain and the person can have some sight. The micro chip is only 60 pixels, but the image is not as grainy as you would think. Individuals are able to see contrasts, shadows, large objects, etc. If Derek is ever able to see enough to maneuver in his environment, we would be thrilled. Right now, the estimation for when the micro chip would be ready and on the market is 2 years. I won't hold my breath, but we'll see. Nonetheless, whenever the technology is there, Derek's left eye should be a candidate.

Please keep him in your prayers, and we'll see what the future holds for him.