Diagnosis: Acute Myeloid Leukemia (AML). A Journey

February 9, 2022. George was now back in the hospital after spending a week at home. He was supposed to start his consolidation chemo right away, but there was still some concern about his leg. It was still painful to stand on and to touch. Dr. Ghimire had expressed concern about it during our meeting with him and suggested that the orthopedic team look at it before starting chemo. So, that is exactly what happened when George got settled in. The ortho team also consulted with the hematology team and both agreed that the leg would need to be dealt with surgically before starting chemo. So, the next day, George went down for surgery. The orthopedic surgeon later said he drained and cleaned an abscess that was left over from the leg infection he contracted during induction. He said when he cut into his leg it was like a “volcano of pus.” Ewwww. But that explains why his leg was so sensitive to touch and hard on the backside of his calf. He was stitched up and had a drain attached to his leg.

Because he had a wound on his leg, Dr. Koch, the hematologist said she would prefer that George stay in the hospital until his blood count started going back up again rather than after the 5 days of chemo. That way, they could keep an eye on him for any potential infection and treat it right away. So, basically it was going to be just like the induction phase. Almost a month in the hospital. There were a couple of differences this time, though. First, there was the addition of a new chemotherapy drug called Venclexta. The doctor had tried to get it to give to him during his induction chemotherapy, but our insurance wouldn’t approve it because George wasn’t over 60 years of age. Needless to say, we were not happy. The docs pushed and got an emergency approval and we received it in the mail at home after induction was almost over. So, they added it to his consolidation round, but at half the regiment – 7 days instead of 14. A second difference was that the chemotherapy was not as intense. Smaller doses over a shorter period of time. A total of 5 days instead of 8, like induction. Also, during this stay, George ditched the gown for his t-shirt and shorts! Yay!

Things went pretty much as they did during induction. George worked remotely at his make-shift office. The techs came in and took his vital signs a couple of times a day, he ordered his meals, and watched tv. Doctors made their rounds every morning. This go round, somebody somewhere got the memo that he is Catholic, so he started receiving daily spiritual visits, sometimes from a nun, sometimes from a priest, and sometimes from a deacon. Unlike my church, The Orthodox Church, special lay people can administer the sacrament of communion, not just the priest.

February 27 – As I write this, George is in the nadir of his chemo treatment. This means his blood count is at its lowest point. It is at this point that he is most susceptible to infection and wouldn’t you know it…a couple of days ago, he started running a fever. The doctor immediately ordered a round of antibiotics and when he said he had a headache, he was sent down for a CT scan. They do not mess around! Which is why George feels comfortable and safe being in the hospital during the nadir phase of his treatment. During the nadir, he feels very tired. He is given blood transfusions, which help give him more energy and platelets. He has weathered the nadir before and the infection that invariably arises during that period (last time, his leg), as he basically has no immune system. But this time, the infection hit differently because this time, we had an appointment on March 1st we desperately wanted to keep: an appointment with the bone marrow transplant team at University of Pennsylvania hospital. The only path to a cure for George is a bone marrow transplant and we are so eager to get that process started. But when Dr. Koch came into the room today, she told George she didn’t feel comfortable letting him leave the hospital to go to his appointment because he was running a fever and so susceptible to infection. It was a devastating blow. What made it even worse was now, his appointment was scheduled for April 20!

I had so many questions….what does this delay mean? Obviously, it means more consolidation treatments. Consolidation keeps George in remission until he can undergo the bone marrow transplant. But how many rounds can George’s body take? Also, it’s not just that the appointment was delayed, but everything that comes after it as well….finding a bone marrow donor, the transplant itself and the 12-18 months of recovery. It was not a good day. George took the news better than I did.