As I sit here, nearly a year later, I remember wondering why the doctor’s smile was so bright as she was delivering the news that would change our lives...she brightly announced they had found the reason Tom's platelet count had been low for so long. "You have Chronic Myelomonocytic Leukemia. CMML." And then we learn that this cancer does not respond well to chemo, nor to radiation. The average life expectancy after diagnosis is 3 years... The only option for long-term remission or a cure is a bone marrow/Hematopoietic Cell Transplant (HCT/SCT). Wait--WHAT? Like so many other families, this had never even crossed our minds!
We were referred to the University of Oklahoma Health System, to their Bone Marrow Transplant Team. Initially they said they would start the search for a Hematopoietic Cell Transplantation (HCT) donor immediately, that Tom should expect to be in the transplant process within 45-90 days. After months of testing (and the complication of an additional pulmonary diagnosis), they told us on March 31, 2021 that they didn't consider Tom a viable transplant candidate. They would not perform the procedure.
We could have just sat down and accepted this limited time, knowing we would watch his decline and help him manage. But NO! We have too much left to experience together!
So March was the end of our journey with OUHS, but the beginning of our relationship with the Mayo Clinic in Rochester, Minnesota, and their team of professionals. Tom spent 4 days in appointments and testing at the beginning of May, and their messaging was SO much more positive. They didn't see a reason to deny him the transplant, and they began their search for a donor match. We returned to Oklahoma to wait for news.
In June, Tom got a call that they needed to see him for a few other tests, so there was a second trip, a second week away from home. And the wait...OH, the wait! The wait was far more challenging than the drive or the being away from home. Every day that ticked by with no news and no update seemed to be 50 hours long. But then, when he got the call that they wanted him to return for pre-transplant evaluation...that was the SWEETEST call!
The first week in September, we made the drive a third time, north to Minnesota, and the outcome was exactly what we had hoped for. Tom's condition was very stable, the cancer had not progressed, his lungs looked...well, not GOOD, but not worse. They had located a suitable donor, and the donor was scheduled for his harvesting procedure to happen in the middle of September. They started creating a schedule of appointments for Tom to receive his new, healthy bone marrow on October 13.
So here we are, days from heading north one more time. The reality has hit. We will be staying in Minnesota for about 100 days, also maintaining our home nearly 1000 miles away.
We plan to share our journey through this page, and hope you join us. Accepting all positive thoughts and prayers you can spare!
Any help you can offer will help to ease the financial concerns of costs not covered by insurance, and allow Tom to focus his energies on healing and fighting through this process.