After dropping off my daughter for the first day of school last week, there was a feeling of relieved accomplishment. I survived the summer, which in June seemed at least logistically unrealistic. Through the help of great family, friends, and colleagues, I was able to participate in this clinical trial for Stargardt Disease, which involved surgery, traveling back and forth to Philadelphia and fitting all the bits of daily life into fewer days every week. Travel arrangements, bill paying, and other mundane obligations were squeezed between entertaining an energetic 9-year-old in record-breaking heat. But all that pales in comparison to what Louisiana is going through once again. As they say, when it rains, it pours.
The hot summer was not the best time to be on an energy sapping immunosuppressive regimen. After about four weeks of taking them, I think I started getting used to them and even started jogging a little bit. But my temporary limitations were exposed when I recently took four girls to a climbing center. They took turns while I had to act as the rope-holding “belayer”, making sure the rope was taut as they climbed up and down the faux terrain. After two hours, I had to sit down and tell them I was done. Per the clinical trial protocol, I was able to stop taking one of the drugs at the six week checkup. Though it hasn’t limited my activities terribly, I will look forward to this regimen winding down completely.
Leading up to my six week checkup at Wills Eye Institute, I was really curious to get another round of photographs done. I mentioned those photographs in my last blog post, and after comparing the latest autofluorescence imaging to those from pre-surgery, Dr. Carl Regillo said “there seems to be a hint of something positive happening in the area where the cells were placed. There is less darkness, which may indicate better functioning of the RPE cells.” The photos had already showed this positive sign two weeks prior, but seeing this a second time really confirmed it for both me and Dr. Regillo.
No new letters on the eye chart are popping out at me as compared to before my surgery, but the visual field test might indicate that I’m experiencing better central vision. I stress the word “might” because the test is subjective, with some normal variation each time you take it. It’s one of those tests that have more meaning over time and with greater frequency. The Octopus 900, the apparatus for the test, exhaustively tests your peripheral vision by presenting lights one at a time, coming in from every corner. I press a trigger button as soon as I see the light – trust me; it’s much quicker than I could answer a Jeopardy question. But then the tough part comes – detecting a moving light across my central vision area. That’s when I’m usually not quite as smart anymore… that light sneaks across my blind spot. Both eyes are tested independently and as I said, tests indicate that I might be seeing that light go across my blind spot better compared with previous weeks using my stem-cell-treated eye.
But science is science; Dr. Regillo reminded me that like nature, it can be unpredictable and requires a lot of time and data before we actually learn anything. With my two months of intensive traveling almost over, I will miss the frequent updates but it is time for science to do its thing and show me what else is in store when the time is right.
As always, the fall season and start of school always makes me feel like things are getting back to normal. At the same time, the leaves are starting to slowly change color and I’ve never seen a weather man stop that process. I’ve been observing the changing foliage for years – across many trees, leaves, and varying weather conditions. The leaves still change around the same time, regardless of the conditions. What has happened in my eye so far is fascinating and has already added to the collective bank of knowledge from which scientists learn from; so too will future data for years to come. Science and nature are exciting, for sure, yet they always leave us with more questions.