Hello All,
This Monday January 12, 2026 is Day 1000 since my bone marrow transplant back in 2023 after treatment for AML. Like Lori, I had several intermediate risk mutations and a bone marrow transplant was my only option. Until I found this site (and LORI) I thought everyone relapsed and lost the battle. However, now I am feeling good (pause to knock on wood) and hopefully will make it to April 19th for my 3 year anniversary. AML totally caught me by surprise in December 2022 during a routine annual checkup where they discovered I had pancytopenia (no physical symptoms). One month previous I had just submitted a 13000+ foot high mountain hiking in New Mexico. But then, the day after New Years I entered MD Anderson in Houston where I would get treated for the next 11 months. Too many drugs, scans, biopsies, and more to remember (although I have it all meticulously documented in a notebook). I was lucky to have a 24/7 devoted wife as a caretaker and medical advisor (she’s formerly a medical clinician). I did have thoughtful excellent medical care throughout the course of my treatment, very lucky. No treatment goes without challenges of course, mine was GVHD of the skin. But first, prior to the transplant, there was chemo to knock out the leukemia and I had infections, fever, skin necrosis and biopsies. Platelet counts ran low and I had trouble breathing from blood clots in my nose. Also got some chemo into my CSF in my spine. However, AML tested below the level of detection by the end! Next came prep for the transplant, wow a rigorous treatment to “burn down the house” i.e. get rid of my faulty bone marrow to make a vacancy for my donor’s marrow. Getting his marrow (a 22 year old angel from Germany) was the easiest part, just like a transfusion. The donor’s marrow was aggressive, he came in with “guns blazing” and we battled for the next 200 days before we reached a detente. There were months of steroids and topical creams to calm the skin GVHD, but to no avail. Eventually had to get 19 rounds of photopheresis where they draw out my blood and treat it to eliminate T-cells attacking me. The only upside was that perhaps he was also attacking any rogue residual leukemia cells left over. There was some collateral damage however, at one point with platelets down to 8, I had a bleed and retinal detachment in my left eye that resulted in 5 surgeries. The eye is still legally blind and blurry to this day. Also lost a lot of hearing and now have two hearing aids full time (The most prominent word in my vocabulary now is “what”). But wait, I never got brain fog which is great since my brain is my biggest claim to fame. I am still working on getting hemoglobin, hematocrit, WBC, and platelets up to normal but at least they are good enough to not need transfusions. Thank goodness! More happy news, my donor Noah has returned my emails and sent me a photo of him and his girlfriend. I don’t know what inspired this young man to do this but I wouldn’t be here without him. Those are real angels on Earth. Anyway, please know that I have come back from as Lori would say “within an inch of my life” to enjoying a new grandson, daughter getting married in April, hiked to the top of a 14er in Colorado this last summer and more. It can happen for you. Don’t give up until the miracle happens. Best wishes and love for you all. Special hugs to Lori, another angel on Earth. GRATEFUL!!!!!!!!!!!!!