Damon collapsed at his house on July 2, 2020, while lifting weights with his housemates. It was determined he had a stroke and was hospitalized at Essentia and given tPA (clot busting drug). Even before the tPA was administered, his symptoms were subsiding and the stroke symptoms completely resolved.
A echo of his heart was done on July 3rd, as some strokes in younger people (he was only 25 yo at the time) are caused by holes in the heart. Unfortunately, a large tumor was found in his heart on his mitral valve and Damon was transferred to Sanford Hospital for open heart surgery. At this point, it was a waiting game to determine the best time to do the surgery, taking into account the chances of more tumor breaking off and causing more strokes and the concerns of doing a major surgery so soon after his strokes. Normally the surgeon said she would wait 4-6 weeks after a stroke before performing major surgery but Damon had his open heart surgery 5 days after his strokes. Cardiologist and neurologists agreed it was "a ticking time bomb" that needed to come out quickly.
Through additional scans, it was determined that the tumor was not on the mitral valve itself but was attached to the mitral valve chordae (chords that move the valve). Because of this, he was able to have a valve repair and not a valve replacement.
The tumor was initially thought to be a benign myxoma and Damon was out of the hospital 3 days after surgery and a full recovery was anticipated. He recovered from surgery very quickly and was back to work part-time within 3 weeks.
Because of COVID, Damon has been staying at the farm and his great friends have been coming to visit him frequently. They wear masks, sit outside, have bonfires, and set up tables to play video games. They have been a huge support to him (and us) since his surgery and now with the things to come.
The pathology report was finally received on August 3rd and everything changed. Instead of being a benign myxoma, Damon's tumor was a synovial sarcoma. Synovial sarcoma is an extremely rare and aggressive soft tissue cancer that is more common in teenagers and young adults. Sarcomas make up only 1-2% of all cancers and synovial sarcomas make up less than 10% of all sarcomas. Add to that the origination of it in the heart and it is even more rare . Only 300-900 people are diagnosed with synovial sarcoma in the US each year and the doctor said that Damon may be the only 1 in the United States to have a Primary Cardiac Synovial Sarcoma this year. That's how rare it is.
Damon was immediately referred to Roger Maris Cancer Center. After meeting with the oncologist there, he was sent to the Mayo Clinic as Roger Maris did not have experience treating this type of cancer.
Scans at Mayo Clinic on August 13th-14th & 17th determined that the cancer may have spread to other parts of his body. He had a biopsy on August 18th and we don't have those results back yet, however, the doctors seem quite certain that these areas are cancer.
Some areas of concern were seen in his brain, however, the radiation oncologists are unsure if it is cancer metastasis or stroke artifact but they expressed confidence that these areas are his brain healing from the strokes and not cancer. They recommend waiting 1 month and then re-scanning. If there is growth, which will indicate cancer, Damon will receive Linear Accelerator Stereotactic Radiosurgery (similiar to Gamma Knife radiation).
There are currently two clinical trials on synovial sarcoma in the US. One requires that he have conventional treatment prior to consideration for the trial and the other doesn't accept anyone with brain involvement (still uncertain if he has this). He will also need to undergo blood and genetic testing to see if he has the required antigens and if his cancer has the required characteristics that the trial requires.
He had a port placed today (August 20th) and starts chemotherapy tomorrow. The chemo is administered during a 4 night/3 day hospital stay followed by 2-1/2 weeks off. Because of the toxicity of the chemo, he can only have 6 cycles.
All of the doctors here at Mayo have stated that what he has is extremely rare and they have been consulting with numerous other doctors regarding it. The radiation oncologists told us today that they have discussed his case and had his scans viewed by 40-50 other doctors. Not really a great thing to hear but good to know they are involving all of these specialists to come up with the best plan for Damon.
Thank you to everyone who has reached out to us already and is praying for Damon. It means so much to Damon, Brad, myself, his sisters and our entire extended family.