Diagnosis: Acute Myeloid Leukemia (AML). A Journey

On Sunday, Oct 29th, George started complaining of chills and he was cold. Hello, fever. We have been expecting you. The nurses followed protocol and took blood cultures because it could be an infection causing the fever. George’s blood counts are extremely low and he is severely immunocompromised. They immediately started him on broad spectrum IV antibiotics to be proactive while we waited for the results.

We waited to get the results of the culture and, sure enough – George had an infection: Staphylococcus species (Coagulase Negative) and Staphylococcus epidermidis (Coagulase Negative). The doctor said this could have been contracted from his skin or from something inside his body that was fine when his immune system was working. Anyway, he is being treated with the antibiotics.

Naturally, George being George, he was not going to let something like a fever keep him from working. So, he soldiered on while feeling very tired and chilled.

However, at the end of his work day, he would shuffle over to his bed and melt into the mattress and blankets, falling into an exhausted sleep.

On Halloween, my wonderful neighbor and friend, Helen agreed to let my dog Chloe out for lunch and dinner time so I could spend more time with George at the hospital. I brought my laptop and we watched A Haunting in Venice. Well, I watched it. George caught about half. Lol.

I left at about 8:00 and the next morning, George called and had the doctor in the room with him. Dr. Welty said that George’s fever had spiked to 102 overnight and that they suspected Grade 2 Cytokine-Release Syndrome (CRS) (see previous post). Grade 1 would have just been the fever, but now he had this low blood pressure (which they had been giving him fluids for) and rapid heart rate. So they were going to give him a dose of tocilizumab, which targets the cytosine IL-6. They did and that seemed to help the fever.

So, the cytosine IL-6 inhibitor will be administered as needed. The doctor said they wanted to nip in in the bud before it gets bad, because normally they would give that “when someone is on death’s door.” Thanks, Doc! We definitely prefer this!

George has received 6 bags of blood and 5 bags of platelets since he was admitted. That’s due to his low counts, I am hoping due to the effects of the chemotherapy before his infusion of cells, although he was needing blood and platelets before he was admitted. His main complaint is fatigue, when he’s not cold and chilled.

Dr. Welty said that the fact that his lymphocytes were now 100% of his white blood cells is a great indicator that the newly infused CAR-T cells are multiplying and doing what they had hoped they would do! I don’t know more than that, because it’s all above my pay grade, but when there is 100% lymphocytes, that means 0% blasts and the doctor said that is good too! But we will get a better picture when George undergoes a bone marrow biopsy next week. Right now, all we are looking at is his peripheral blood.

That’s it for week 2. Stay tuned for week 3!