Diagnosis: Acute Myeloid Leukemia (AML). A Journey

It’s definitely been a minute since I posted an update. Mainly because things have been pretty uneventful for the past couple of weeks. Which, in some ways is a good thing!

I continue to try to find food that George likes to eat. I think we have a good combination for breakfast….these egg frittatas are a winner because, according to George, they taste like what they are…like what they’re supposed to taste like.

Not a great amount of calories, but a great source of protein! I add a Kodiak protein muffin and feel like we have a good calorie & protein combo to start the day!

It’s weird that George likes the muffins, because the taste that is most off for him is “sweet.” He manages to eat whatever I make him for lunch and dinner, and while he may not have an appetite, he does a good job of eating anyway.

George is supposed to be exercising for at least 20 minutes every day. I can tell you that is not happening. His preferred method of exercise is walking outside, but since he needs to stay out of the sun, we are limited to when and where he can go. Last Sunday, we went out to the mostly shaded path through Smithville Park and he walked an impressive 1.7 miles…almost for an hour, although he took a break to take a phone call and a little rest stop.

Exercise is important for his recovery, but he finds it hard to squeeze it in. At the end of the work day, he is spent and just wants to relax in his chair. He has gotten on the old exercise bike we have downstairs a couple of times after work…did 7 miles last time, but he really lacks motivation. He would much rather walk. But even if he could walk, it’s hard to find the energy after a full work day. I bought one of those little under desk bike pedal exerciser, but he isn’t interested in even trying that.

The home infusion visits continue every Monday and Thursday. Our original nurse, Amanda, is leaving the field and will be moving to training, so we have had some new faces come to the house. One nurse, Linda was attacked by a patient’s Pit Bull and had to get 64 stitches and has a paralyzing fear of dogs now…so we have to put Chloe out when she comes.

While the home infusion team is great, ordering supplies and getting them delivered can be a pain in the ass. It’s hit or miss whether or not we will get the additional supplies we ordered when we receive our magnesium delivery on Fridays. We finally got our replacement red biohazard bag and “sharps” container (where used blood syringes go). Aren’t they a delightful addition to any dining room?

On Day +38, George had a check in/up appointment with Tetyana, a nurse practitioner on the BMT team. She said everything looks good and that everything George is experiencing is normal…the fatigue, the lack of appetite, the food tasting off…she went over some lab results with us, and the most interesting to me was the chimerism result. What does that mean?

Well, chimerism genetic testing is used to monitor the success of blood stem cell transplantation (like bone marrow transplantation). The test looks at the level of donor bone marrow versus the level of bone marrow from the patient (recipient). Tetyana told us that on the three tests they preformed, George’s blood was 97%, 89% and <99% donor cells (see below). I need to get more information on what that all means, regarding George’s prognosis for recovery and chances of relapse. But I assume the higher the donor percentage, the better and ideally, 100% chimerism is the desired outcome. This test is from August 2nd. George will have another lab series like this done when he sees Dr. Loren on August 31.

We are hanging in there. Honestly, we are both tired of everything and over this whole process. But, like Robert Frost said, we have miles to go before we sleep. And so we carry on…one day at a time.