Diagnosis: Acute Myeloid Leukemia (AML). A Journey

….were not what we were hoping for.

In addition, the DLI did nothing to boost his chimerism numbers. He only has 2% donor cells in his bone marrow.

Today is 223 post transplant, almost 7 months after transplant. We so thought George would be getting his first round of childhood vaccines last month, but that has been put on the shelf for now. We thought he would be on the other side of this wretched leukemia. At least for a few years, you know? But here it is, only 7 months later and he has evidence of disease in his marrow.

We don’t know anything. Not much has been explained to us. The only thing we have at our disposal is Google, and judging by what we found there, it seems George may have MDS (myelodysplastic syndrome).Myelodysplastic syndromes are a group of cancers in which immature blood cells in the bone marrow do not mature or become healthy blood cells. After George’s first bone marrow biopsy in January 2022, the report said there was a possibility he had previously undiagnosed MDS due to the clonal shape of some of his cells. MDS is worrisome because it can become AML (The leukemia George had/has).

We don’t know if that’s what happening here. George has an appointment with Dr. Loren on Tuesday, the 14th. Valentine’s Day. We hope to get some information and an explanation about what is going on and what the next steps are. Dr. Loren had previously mentioned chemo and the possibility of another bone marrow transplant. I guess we discuss all that on Tuesday.

George is discouraged, demoralized and scared. He’s a little angry as well. I get it and I don’t blame him. Did he really go through everything he endured for the past year and a half to end up back here?

We are bracing ourselves for what we will learn on Tuesday and trying to remain positive. George said he’s not getting his hopes up. He did that before his bone marrow transplant, as it was offered as a potential cure, with little emphasis on the “potential” part.

George feels good, except for the lingering cough from his COVID pneumonia and fatigue. His blood counts look good. So, we are clinging to those positive things.

I will post an update about our visit with Dr. Loren after George’s visit on Tuesday. We’ll see how far off we were with our Google search results!