Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
In the Spring of 2019, Chris noticed some blurred vision in his left eye and just thought that it was computer strain related. An eye appointment June 6, 2019 first indicated a retinal detachment. Later that same day, he saw a retinal specialist and was told that the retinal detachment was caused by a tumor on the posterior part of his eyeball. He was told that this was most likely a form of cancer called Choroidal Melanoma (aka Uveal Melanoma or Ocular Melanoma). He was immediately referred to the Mayo Clinic Rochester, as this is a very rare condition.
Approximately a week later, Chris had an initial evaluation with an ocular oncologist at the Mayo Clinic and it was decided that a complete enucleation (or removal) of the left eye was the best course of treatment given the size and location of the tumor. Outpatient surgery was scheduled for June 21 at the Mayo Clinic and went well overall. Chris recovered over the next several weeks, then was fitted with a prosthetic eye. It's amazing how realistic it looks. Most people who don't know Chris and his story cannot tell that it is a prosthetic. He's adjusted very well to only having one eye and can still golf and do most activities with minimal impact...just don't sneak up on him on his left side!
Unfortunately, removal of the primary tumor in Ocular Melanoma is only the first step, as it has a high rate of metastases. Based on genetic testing of Chris's tumor, we learned that there was a 75% chance of it metastasizing within the first 5 years. MRI and CT scans every 3 months were ordered. Overall, his scans had been clear of any metastases up until September 30, 2020. There were new spots on his liver that they were concerned about and recommended a liver biopsy. Even though, we had moved to Phoenix, AZ in July 2020 and there is a Mayo Clinic in Scottsdale, we decided to make the quick trip back to Rochester to have the best doctors perform the liver biopsy. The results were positive for malignant melanoma tumor metastases in the liver.
Due to the rarity of this cancer, there currently is no FDA cure or treatment plan for this disease. What we know from our research is that the Mayo Clinic is not a forefront leader in treating Ocular Melanoma. Amazingly though, we were connected through a family friend physician with one of the best Ocular Melanoma teams at Thomas Jefferson University Hospital in Philadelphia, PA. The primary physician, Dr. Marlana Orloff, even reached out through Facebook and gave our friend her personal cell number to pass along to us! Not only that, she actually answered when we initially called!
Dr. Orloff set our minds more at ease, filling us in that they were doing amazing things at their facilities with liver-directed immunoembolization therapy treatments. Within weeks, we were able to get in for Chris's first treatment in Philly on December 3, 2020. This would begin Chris (and sometimes Nicolle...or Kara McDermott) flying out monthly for liver treatments. Chris handled these treatments with minimal side effects, some fatigue, abdominal pain, etc. After the first 2 treatments, the follow-up MRI scans showed promise. The tumors had either stabilized or shrunk. He continued with 2 more immunoembolization treatments in February and March 2021. However, the next MRI scans after the 4th treatment in April were not as good, it showed that the tumors had almost doubled in count and some had grown. The team at Jefferson decided that the liver-directed immunoembolization treatment was no longer working.
The next possible treatment option was a liver-directed radioembolization of radiation. But, before that could happen, they needed to perform a procedure called a "flow map" to determine if any radioactive beads that they place in the liver would actually stay in the liver. The doctors had already identified during the immunoembolization treatments that Chris's liver anatomy was atypical. Most people have arteries that flow into the liver and stop there. Chris has arteries that flow into the liver and then flow back out again into the stomach, lung and small intestines. During the flow study, they would try to close the extra arteries that flowed out of the liver to make it safe for the radioactive beads to stay in his liver. If the radioactive beads went into the stomach/lungs/small intestine, they would cause painful ulcers for the rest of his life. During the flow map procedure they determined that they could not successfully close off the arteries, therefore, radioembolization therapy was not an option. They switched to immediately give Chris a large dose of chemotherapy directly to the tumors in the liver. He had to stay overnight again in the hospital to watch for side efffects, which were tougher than the immuno agents they had used previously. Chris experienced a little bit of nausea, but they were able to prescribe anti-nausea meds to help with that. The biggest side effect is fatigue. He spent the first week after treatment in bed or on the couch. The fatigue has slowly gotten better. He has been back to working full days and even played 18 holes of golf this weekend with two birdies on the score card.
Chris will go back to Philadelphia June 3 and have another round of liver-directed chemoembolization. A few weeks after that treatment, he will have another set of MRI scans to see if it this new treatment is helping. His dad, Steve, is flying out this time to meet him in Philly. Steve will have a lot of time to explore the American history areas, as the hotel and Jefferson Memorial Hospital are only a 10 minute walk from Independence Hall and the Liberty Bell.
We had hoped to not have to do a Caring Bridge site through all of this, but it's been much more difficult to keep everyone updated recently. We just want you all to know how very much we appreciate all of your love, support, prayers, cards, encouragement, etc. Earlier this Fall, we were absolutely blown away by the random Venmo/Zelle/PayPal donations that we were surprised with on the way to the airport before our very first trip to Philadelphia in December. There honestly aren't words to fully describe our gratitude. We could not do all of this without you. We love you all and miss you much. We know that we are further away from most of you now that we are in Arizona, but have felt so at home here in our new state. We love the weather, the sunshine especially, and absolutely the endless opportunities of golf for Chris have been the best therapy he could ever have in all of this. We have no regrets on moving down here (other than Chris can't find a pizza replacement for Davanni's, lol), but can't wait to hopefully come back to Minnesota to come visit!