Diagnosis: Acute Myeloid Leukemia (AML). A Journey

During the first hospitalization, George had the bone marrow biopsy to get the initial diagnosis of AML and then we had to wait a couple more weeks for the “molecular” data to come back. That would show which actual mutations on his chromosomes were linked to the onset of his leukemia. The news we got was not what we were hoping to hear. Because George had one certain mutation, Dr. Behrens indicated it was very likely that his leukemia could not be cured by chemotherapy alone…that relapse was likely without a bone marrow transplant. So, that’s how we ended up on the path towards bone marrow transplant (BMT). Our goal was definitely a cure.

Dr. Budak, one of the oncologists, came in and offered up some suggestions for hospitals with BMT programs for us to look at and make our decision. Of course, ideally we would go to MD Anderson in Houston, as it is the leading hospital in the country for BMT. The hospital George is in now is also an MD Anderson hospital and his hematology team consults with the staff in Houston concerning George’s treatment. Dr. Behrens seemed to be pushing us to choose Houston, but the logistics were just not feasible. We would have to commit to moving to Houston for 3-6 months and then we would have to return to Houston every 3-4 months. It would be expensive, as we would have to pay for housing and meals, and we would be isolated without any family nearby.

So, after looking at several different options closer to home, we settled on the Hospital of the University of Pennsylvania (UPenn). We chose them because they had an established program, the proper certifications, had clinical trials and the staff there had impressive educations and residencies/ fellowships, as well as top notch ratings. We informed the doctors of our decision and an appointment was made for George for March 21. That was like 2 months away! So Diane, the Transition Care Manager, worked her magic and got the appointment moved up to March 1. Yay!

If you read may last entry, you know that because of delays in the consolidation chemo and an infection, George wasn’t able to make the March 1 appointment and we were despondent about having to wait until April 20 for the next scheduled one. So Diane did some leg work and asked if we would want to go to Jefferson University hospital in Philadelphia because she could get George an appointment on March 11. We hadn’t even looked at that hospital! We felt torn…if we took the appointment, it might feel like we were settling and that’s not something we wanted to do with George’s health. But an earlier appointment meant we could get the ball rolling towards transplant and we are both anxious to do that. So, that was the dilemma. If we kept the April 20th appointment UPenn, we know George would have to undergo another round of consolidation chemo before then and the same thing could happen…he could get an infection again and have to miss that appointment and we would be delayed again. We know he can make the March 11 one at Jefferson because George’s blood counts are climbing right now and it is kind of perfect timing. So, after reassurance from Dr. Koch and our favorite nurse, Madison, we took the March 11 appointment. We didn’t cancel the April 20 one, though, in case we don’t like the vibe at Jefferson or we aren’t comfortable with the consultation meeting. So…onward we go! Next stop, Jefferson University Hospital!