On March 7, 2009 I was diagnosed with an Ependymoma (brain tumor) at Children’s Hospital in Minneapolis, MN. I had brain surgery on March 11, 2009. They could not get all of the tumor so I had 2 rounds of chemotherapy and a second brain surgery on May 19, 2009. Dr McCue resected the whole tumor and I didn’t have to have any more chemotherapy. Proton radiation was completed at Massachusetts General Hospital in Boston. In 2009, there were only 5 hospitals in the United States that had proton beam. We were blessed by the opportunity of staying at Christopher’s Haven, an apartment which is right across the street from MGH. One of the benefits of going to MGH for my radiation was being able to go to Red Sox games and meeting the whole team. I became a die-hard Red Sox fan at a very young age.
I was just shy of being cancer free for 10 years when I was diagnosed with my second ependymoma. I had my third brain surgery in January 2019. A week after I was sent home from surgery, I had a series of seizures at home and had to be transported back to Mayo Rochester. I spent some time in ICU surrounded by family and friends. I did physical and occupational therapy for a few months afterword to get my strength back. which was followed by 35 more rounds of proton radiation.
I began experiencing side effects from Proton radiation and the possible tumor (spot) in the last couple scans. The doctors decided the best option was to have surgery to figure what was causing these problems, and to remove the spot on my MRI to figure what it is. I had my fourth brain surgery on July 19, 2022 and it was confirmed the spot was another tumor. I am currently waiting for a date that I can begin a clinical trial in Seattle WA, so for now we are in another period of waiting. If Seattle Children’s is unable to get me started within the next couple months, I will begin a chemotherapy regimen. We remain hopeful that I can go to Seattle sometime in the next couple months.
I’ve been busy focusing on myself and all the good things I can. “Peace, love and positivity” is my mantra right now. I have a supportive family, supportive friends (whom I consider family) and some people I have never met who have been praying for a miracle for me. I am living with my sister, nephew and grandma in Lake Crystal and get to see my friends and family frequently.
We are so excited for My Happy Haven/My Happy Place room makeover, and I am very grateful my mom nominated me for the opportunity of the first “On the Road” design. Thank you for being willing to help “outside of the box” by granting a makeover for an adult man who has been dealing with cancer since a young child. Feeling so blessed and loved.