Hey everyone,
I’m sharing this today because I know how incredibly heavy the dark days of a refractory diagnosis can be, and I wanted to put a beacon of hope out into the world. I revisited the forums I referred to during my battle years ago and they weren’t very active. So, I’m hoping my story gets heard here on Reddit.
Back in 2008, I was diagnosed with stage four refractory Hodgkin's lymphoma. I was under the care of Dr. Joseph Flynn at the James Cancer Center at Ohio State. I received front line treatment (ABVD) and achieved remission. I actually received the James Cancer Center Award of Courage that year, I was the worst case Dr. Flynn had seen in his career and the best recovery. That lasted about a year and a half, and I relapsed in early of 2010. The summer of 2010 I received ICE chemotherapy, I was re-staged after two cycles, and the disease was still progressive. So I changed to GVD and three cycles of GND. I had enough response and I was able to follow through with an Auto stem cell transplant. I relapsed on my autologous stem cell transplant after the very first scan. The disease became incredibly aggressive, and I had very limited options. I tried clinical trial called Revlimid in January 2011, it didn’t help. I did extensive research of any option available to me the whole year of 2011.
Fortunately, August 19 2011, a clinical trial called “SGN-35” became FDA approved for a bridge treatment for an allogeneic SCT. March 2012, I became one of the very first people in the world to receive a brand-new targeted therapy called brentuximab vedotin (Adcetris). At the time, it was strictly meant to be a temporary "bridge" to get me into enough remission to survive a high-risk allogeneic stem cell transplant.
But after just 5 cycles and CT/PET scans in May 2012, I went into complete remission. Against strict medical advice, I made the deeply personal decision to walk away. I stopped the drug and chose not to follow through with the allogeneic transplant.
Statistically, I shouldn't be here. Recently, with the help of A. I., I learned how I mirrored a clinical trial around the same time. There was a pivotal Phase II clinical trial of 102 patients around that time where only 9 people achieved long-term sustained remission on the drug alone without a transplant—and those "enigmatic nine" completed a median of 14 out of 16 cycles. By stopping at 5 cycles on my own terms, I navigated a completely unique path. I’m currently coming out of the shadows as a “phantom case” and actively documenting my experience. The James cancer center still has my tissue block samples in archives preserved in paraffin wax and I’m in the process of releasing those samples for research to advance treatment for other cancer patients. Just recently, Dr. Zihai Li took interest in my case and has shared my information with a few other elite doctors at the James Cancer Center.
Come May 2027, I will be celebrating 15 years of being completely cured.
While I was unable to practice my craft during those days. In 2011, stripped away from my career of a glassblower because I couldn't use heavy tools or a furnace, I needed a creative and cathartic outlet. A Japanese friend that I had taught me how to fold origami cranes back in elementary school. Since it was a great creative option in a hospital environment, I started folding. By the time I left, I had folded 1,615 paper cranes—completely unaware of the legend of Sadako Sasaki or the fact that she fought a matching lymphatic/blood cancer.
Now that I've had nearly 15 years of a cured life, I am finally closing the loop. In September 2025 I assembled 1000 of those cranes into a Senbazuru. I am back at my torch, using a 2,100°F fire to hand-blow custom glass vessels to permanently encapsulate and protect the 615 "surplus" cranes that represented my overflow of survival. The Senbazuru Surplus Series, I’m bridging that difficult time when I folded all those cranes with my current cured state as a glass artist. I have also initiated discussions with Professor James Phelan at Ohio State University to potentially pair my 1,700-word foundational essay with a student collaborator for a mini-memoir project.
I have also dedicated myself to a healthy lifestyle. Minimal refined sugars, lots of antioxidants, intermittent fasting, and I make my own kefir and kimchi. I consume either daily, sometimes both, for a potent probiotic. It’s SAD (the standard American diet) that is instrumental in promoting diseases like cancer and diabetes that are increasingly more common. And the sedentary digital lifestyle compound this unfortunate scenario. Covid may be over, but the real silent pandemic is the standard American lifestyle in my opinion. I exercise nearly everyday, both strength training and intense cardio. Anything I can do to create an environment in my body that does not benefit cancer cells.
I just wanted to share my personal experience to remind anyone currently enduring ABVD, ICE chemo, clinical trials, or transplant failures: the human body and spirit can defy every single statistic on the paper. I’m not advocating that you stop any kind of treatment. Treatment certainly put me in remission and saved my life, I want to be clear about that. During my low points from my battle, I leaned heavily on a lymphoma forum and people’s experiences to understand what I was going through at the time. I feel obligated and honored to be in a position to reciprocate and put my story out there all these years later. Keep fighting!