Diagnosis: Acute Myeloid Leukemia (AML). A Journey

After 9 nights in the hospital, George was finally released yesterday! The doctors ran exhaustive tests and cultures and everything came back negative (and they tested for A LOT). No pneumocystis pneumonia (whew!). That left them with the conclusion that George’s lung issues were caused by the chemotherapy drug Vidaza that he had been receiving via infusion for the past couple of months. They said they had seen that before. So they continued treating him with the broad spectrum antibiotic and steroids (Prednisone).

The doctors were keeping an eye on his liver panel because his liver enzymes were going up and they were high. They suspected it was DILI (drug induced liver damage) and sure enough, when they started backing off some of his meds, the numbers started going down. For that reason and because he was off the oxygen, he was released to go home. The doctors reassured George that the liver is pretty amazing and can repair itself! They emphasized the use of the word “injury” over “damage.”

Of course, George came home with some new medication. Oy, the pills! The morning is the worst. There are only 3 nighttime pills!

He has a follow up appointment with his oncologist, Dr. Loren on Monday and a follow up with the pulmonologist next month. Dr. Loren changed his chemo med to a cousin of Vidaza that hopefully won’t cause any lung issues and has shown to be just as effective.

While in the hospital, the results of George’s bone marrow biopsy were posted. When we first looked at them, we were panicked because it showed that although there was no increase in blasts, there were the words “persistent” and “recurrent,” words we saw on his bone marrow biopsy results that indicated he had relapsed.

We were desperate to know what it all meant, so George’s attending physician in the hospital, James took a look and said “Yes, I honestly have to say there is disease there.” Ok. That wasn’t what we wanted to hear. But he said he would reach out to Dr. Loren and ask her for her input and let her know we would like to hear from her.

He came back the next morning and said “Dr. Loren said that it is good news.” Huh? “It’s good news because the disease they see in the bone marrow is MDS, not AML and that means George is still transplantable.” Ahhhh….OK! Who knew having MDS would ever be good news??? But that means transplant #2 is still on schedule for July.

And then, this happened…I was scrolling through the jillions of test results on George’s UPenn portal and saw a bone marrow donor percentage result from April 6. When I looked at it, it showed George was 46% donor cells! Whaaat? Last bone marrow biopsy, he was 2%! What is going on??? We will definitely be asking with the significance is of these results when we see Dr. Loren on Monday!

George went back to work today (in his home office). He is still winded when he walks anywhere, but he is coughing a lot less and it’s not as violent a cough. So grateful he is home! More updates as they come!