Diagnosis: Acute Myeloid Leukemia (AML). A Journey

1. That since my last post, George received a new taper down schedule for his tacrolimus and should be completely off the immunosuppressants by the end of the month!

2) At the visit with Dr. Loren two weeks ago, George was told he only had to do his magnesium infusion every other day, which was great! Yesterday, he was told he can stop all together! No more infusions!

3) After reducing the tacrolimus a bit, George’s chimerism numbers came up! Since then, he has tapered down even more, so we are hoping we will see that his marrow is 100% donor cells when we get the results of the chimerism test they are doing from the blood they took yesterday.

4) George was allowed to travel! On days +113 and 114, we went away for the weekend to the Hudson Valley and stayed at the Thayer Hotel at West Point, one of our favorite places there. It was so wonderful making that familiar drive…passing the beautiful fall foliage as we made our way into the valley. We visited a few wineries, ate at some nice restaurants and thoroughly enjoyed what felt like was a return to our pre-diagnosis life. Of course, we still adhered to social distancing and masking safety protocols around people.

5) George will get his PICC line removed on December 21! He can shower without pulling on his neoprene sleeve, lift things around the house and can return to the gym! And, the bi-weekly visits from Penn Home Infusion will stop. No more visits from our favorite nurse, Jessica to take labs. Another step towards a return to normalcy!

6) George’s appetite has returned and he is walking a little over two miles almost every day!

7) George will start getting his first vaccines in January! He will have to get all his childhood vaccines again, as his entire immune system was wiped out.

So, I am definitely happy to have so much good news to report! Of course, with the reduction of the immunosuppressants, we have to be on the look out for signs of Graft vs Host Disease. With George’s immune system being freed up, it is possible his new donor cells will be able to wake up, look around and say “Hey! I don’t recognize this body….it’s foreign. ATTACK!” We are hoping that doesn’t happen! If it does, it is treatable and actually, a little GVHD is good because it means the donor cells are alive and doing their thing!

Until next time!