Hey friends and family! Ross here, with some incredible news from my recent trip to Minnesota. After just one month of taking Darovasertib, Lenny (my uveal melanoma tumor) has SHRUNK! I’ll dive into that in a minute, but first, let me give you a recap of my latest Minnesota trip.
Trigger Warning: This post contains medical images of an eyeball.
The Journey
This trip was a bit different from the usual. Instead of navigating to the airport solo, I had the best chauffeur team—my amazing wife, Megann, and our youngest daughter, Aubrey (aka Bean). She took her role very seriously, making sure we were out the door on time and getting in all the goodbyes before we left. It was a whirlwind, but I breezed through security for once. After a few minor delays, I was airborne and heading toward Minnesota.
Here’s a clip of me giving an update on our way to the airport:
Flying into major airports, instead of regional ones, has been a game-changer for me. Not only is it cheaper, but there are more flights, better layover options, and plenty to do while I wait. Once I landed, I picked up my rental (a trusty Nissan Sentra) and made the drive to Rochester. When Megann asked if I had any profound thoughts during the drive, my honest answer was—nope! My brain was in full mission mode, focused on the task at hand: checking in with Lenny.
Day One: The “Lenny” Photo Shoot
Day one started with a fasting lab at 7:40 AM (yikes). Afterward, it was time for the main event: the “photo shoot” with Lenny. This Fundus photo session is a crucial part of tracking uveal melanoma. High-resolution photos of the retina are taken from every possible angle, creating a patchwork of eyeball images. These pics help the doctors track any changes in the tumor and assess how it’s responding to treatment. I also had an ultrasound. Not glamorous, but hey, anything for science.
Then came the best part: Dr. Hupy, Dr. Dalvin’s associate, showed me the results. Lenny is COLLAPSING on himself! After just one month of Darovasertib, the tumor shrank from 18.4mm x 6.5mm to 16.7mm x 5.7mm. For context, Lenny’s original size back in August was 17.5mm x 6.2mm. That’s a 1.7mm shrinkage in length and 0.8mm in height. It’s like 10% of the tumor is gone after one month of medication! Talk about progress! What a great gift for the holidays!
Side Effects and Silver Linings
While the tumor’s shrinking, I’m not without a fair share of side effects. Darovasertib has a distinct personality, to say the least. Nausea, vomiting, diarrhea, and—brace yourselves—a little bit of anal leakage. (Think Olean chips from the ’90s—yikes.) But for nearly 2mm of tumor shrinkage, I’ll take it. Dr. Dimou, the study coordinator, gave me a refill of anti-nausea meds, so I’m all set for another month of experimentation.
Wrapping Up
The next day, I picked up my Darovasertib for the next month, took my morning dose under observation (this time only two hours instead of four), and was free to head back to the hotel. After a quick lunch/dinner, I crashed early—7:30 PM bed time might be a personal record for me!
Christmas morning, I was up at 6 AM, drove back to St. Paul, returned the rental, and caught my flight home. I’m pretty sure I saw Santa going to the North Pole while I was in the airplane! Megann and my daughters, Amanda and Aubrey, were waiting at the airport to welcome me back. It felt like the perfect way to end the trip—back with my family, celebrating the small but mighty victories.
Looking Ahead
The journey continues! I’m sticking with the plan: another month of Darovasertib, more updates, and hopefully, even more progress. I’m so thankful for all your support—it’s the perfect combination of science, faith, and community that’s making all of this possible.
Here’s to even more shrinkage, brighter days ahead, and being with family this holiday season. Thanks for sticking with me on this wild ride!
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