Diagnosis: Acute Myeloid Leukemia (AML). A Journey

All my days are starting to run together and I am finding it hard to remember what happened during which week.

One new thing is that after George’s fever spike last Thursday night, X-rays showed he had fluid on his lungs. He was given Lasix ( a strong diuretic) and was put on oxygen when his O2 level dropped to the 80s. He was put on 4 liters of oxygen and on Friday, they tried to wean him off of it, but he ended up needing more so he it was elevated to 6 liters. Saturday night, he was on 8 liters of oxygen and the team exchanged the nose cannula for some type of mask. He was also started on steroids.

My dear friend, Shelly visited me from California for the weekend and we went to visit George a couple of times. He seemed to be breathing well on the oxygen and was on the cannula when we came on Saturday.

While Shelly and I were visiting, the infectious disease oncologist dropped by to chat and examine George.

The question is, what is causing the fluid in his lungs? Is it a fungal infection? We are waiting on results from those tests. Or, is it part of the CRS? CRS can cause “leaky capillaries.” Are the CAR-T cells multiplying/ expanding and if so, are they killing leukemia cells? And if so, how long will that last? Those are questions the doctors/researchers are looking at.

By mid-week, he was off the oxygen, which was wonderful. He has been receiving IV antibiotics every day and is on a strong anti-fungal, which he actually has been on prophylactically since he was neutropenic (back in February). Because his blood counts are still so low, he has been receiving platelets and blood regularly. This time they have added a cryo supplement to the platelet infusion, since the platelet infusions don’t seem to be elevating his count enough.

George also had an EKG done to make sure everything is kosher. It’s so great that they can just do that bedside in his room!

Yesterday evening, we took a little walk around the floor to get George’s. lungs some exercise. the physical therapist urged him to do that daily.

George also had a bone marrow biopsy on Wednesday, day 14 after infusion of CAR-T cells. We don’t really expect to learn anything from this biopsy. It just serves as a marker in the research protocol.

He is still working at his make-shift office in his room. His only constant complaint is fatigue, which is understandable considering his low blood counts.

George loves receiving cards from friends and family. Shelly brought him one from a group of our Facebook friends which included a monetary gift and George was so touched and grateful. It is wonderful for him to feel like he’s thought of and not forgotten. It means so much! We have some wonderful friends who have supported us since the day George was diagnosed and we are both so grateful for them. It helps to feel like you’re not going through this awful challenge alone. Thank you for remembering him.

We are still taking it day by day. George feels optimistic now and that’s awesome. To feel any other way is to have miserable days and sleepless nights. If all goes as hoped, he will be able to leave the hospital the day before Thanksgiving. Fingers crossed!