Inspirational Stories

It was November 2023. The doctor looked at me and said, “Mr. Reese, I’m terribly sorry to have to tell you this, but the leukemia has relapsed again. Combined with the graft-versus-host disease (GVHD) that is currently raging, we no longer have options for treatment. Our suggestion is that you start comfort care through hospice.”

I wasn’t sure how to feel. My fight with leukemia had lasted over the last year and a half. I had done everything the doctors had asked and had a strong community of family and friends. They were an enormous source of strength and support. There had been many times with infections and other complications that doctors said I could die, but now it was final – I had less than three months to live.

It had started on March 25, 2022. My primary care doctor looked at me very seriously and said, “I’ve consulted with our hematologist, and he ran the lab tests again himself. You have acute leukemia. You need to go to the emergency department immediately, and they’ll start treatment.” Within 48 hours, I’d had my first bone marrow biopsy and was starting my first induction of cytarabine and daunorubicin. Within days, one of the hematologists told me the exact form of leukemia was acute myeloid leukemia (specifically 11q23 KMT2A rearrangement with RAS and WT1 mutation). He described it as a rather unfavorable and aggressive form of leukemia. Hmm . . . it seemed my body had picked a fight with the 800-pound gorilla of diseases.

Since that day, there have been numerous adventures on this journey. It took two inductions of cytarabine/daunorubicin to get into the first remission. Two months later, I relapsed and care was urgently transferred to The James Cancer Center at The Ohio State University. Courses of decitabine and venetoclax failed to stop the relapse. Finally, I qualified for a clinical trial using SNDX-5613. That did the trick and placed me into remission – ready for a bone marrow transplant. My son was chosen as the donor, and the transplant was on February 15, 2023. Side adventures on this odyssey include severe GVHD, thrombotic microangiopathy (TMA), COVID, pneumonia, four kidney stones (one requiring surgery), atrial fibrillation in conjunction with tachycardia, a Listeria infection, deep vein thrombi (DVTs) in both legs, and pulmonary emboli (PEs) in both sides of the lungs. Over 130 inpatient days were required to fight everything. Through it all, I was blessed with a strong constitution and special strength drawn from an incredible community of family, friends, and faith partners.

The string of comorbidities conspired to prevent a proper treatment of the leukemia to keep it in remission. By November 2023, I was in the situation described at the beginning of this story. A bone marrow biopsy showed that blast cells levels were at 10% and increasing. The mutation had returned. The reality was that I probably had a less than 5% chance of being alive in three months. I was released into hospice care and started preparations for the inevitable end. Over the month of December, there was a bad reaction to a red blood cell transfusion, a period of lethargy during med transition, and a flare-up of the PEs which looked like I wouldn’t last through a few nights.

But I did persevere, and by mid-January, I started to feel better and gain some strength. My hematology team at The James kept in touch with me and scheduled an appointment at the end of February if things kept improving. Another bone marrow biopsy (my 15th) in March 2024 showed astonishing results – the blast cells had been reduced to less than 1%, and the mutation was gone. The transplant had kicked in and beaten back the leukemia. Now there were options for treatment!

That’s where I stand in April 2024. The leukemia is in remission, but I still have a long way to go on the autoimmune disease.

As I leave hospice care to return to my post-transplant team, you may wonder what kind of great insight into life, the universe, and what-not have I learned through this. I’m sorry to say, but nothing truly earth-shattering. The answer is still 42. I’m still waiting for the Good Lord to bestow the Wisdom of Solomon upon me (that will probably only happen in Eternity). I’m not holding out to be struck by the lightning bolt of knowledge by Zeus or Jupiter.

I have been greatly enforced, though, in the belief that everyone you meet is fighting some battle, whether it’s apparent or not. Letting go of our own self-concern to show even a moment of empathy and understanding can turn everyone we meet into a reflection of caring and love, emotions we all want to flow our way. I have been a sponge for the tremendous outpouring of support and caring from my community. As Lou Gehrig said, “I consider myself the luckiest man alive.” That is so true – I’m the luckiest man alive because of the people around me.

I have a ring that reads, “Never, ever give up… The Story isn’t done.”

It helps me remember that I’m just starting part two of this book.