Diagnosis: Acute Myeloid Leukemia (AML). A Journey

George had a visit with Dr. Loren earlier this week. When we were taken from the waiting room back to the cavernous hall of offices, we were told to go to room 6. Well, we did that and we found the door shut and we could hear voices inside the office. George went back to the front to find out what was going on and while he was gone, the office opened up and Dr. Loren was inside. She said a colleague had come in for a moment and apologized. She asked if George was coming, and I said yes. She then asked how he was doing? Is he nervous? Scared? I said, well he’s actually doing well! It didn’t occur to me that he should be worried or fearful….

George came into the office and Dr. Loren asked how he was doing and he responded “great!” She seemed a little surprised, but very pleased. We started discussing George’s situation and she said she was very pleased that the insurance approval came quickly and the donor cell collection came together quickly. She said us giving her and the team our Humana case manager’s contact info made everything move quickly and smoothly. Tina is wonderful…we agree!

I asked her to confirm if I had a correct understanding of the situation: that George was recommended for a bone marrow transplant because of his FLT3 mutation, which makes the likelihood for relapse greater and she said, yes. Then I said, what it feels/seems like to me is happening right now is that the harsh chemo and total body radiation worked and did what it was supposed to do, i.e. wipe out the leukemia because his last bone marrow biopsy showed no sign of leukemia or his mutation. But the bone marrow transplant didn’t do what it was supposed to do, meaning because his marrow is only 14% donor, the donor marrow didn’t replace George’s cells and he is at risk for relapse. She said, yes that is correct too. That was sobering.

Dr. Loren said that many times, relapse happens quickly and that it’s great that George is still in remission. She said we have this window right now – while there is no sign of disease and before a potential relapse to get this booster infusion of donor cells done and hopefully, get George to 100% donor, or at least a high percentage mixed chimerism. I’m not going to lie…every day in the back of my mind, I wonder what’s going on in George’s marrow and wonder if this is the day “it” comes back. It helps to remember that he is taking Xospata, which is targeted therapy for this FLT3 mutation.

Dr. Loren assured George that if he needed to talk to someone, there were people available to help him deal with his feelings, etc, but he told her that wasn’t necessary. He’s such a positive, strong man when we are with the doctor, but like anyone else, in private he can sometimes be sad, frustrated and worried. As always, our approach is living life one day at a time and making the most of each one.

So, now we are counting down the days until Wed, Dec 14th when we will head to the apherisis center at the Hospital at UPenn to receive his DLI (donor leukocyte infusion). We are coming up on one year since this crazy, awful journey began – December 30. Sometimes it feels like yesterday, and sometimes it feels like a lifetime ago. So grateful for the gift of another year with my love.