[JordanN]

Hi, Annette!

I completely understand how you feel! As many have said on the forum, you get used to a new kind of normal where you can sort of anticipate what your loved one will need. My dad's blood values followed a fairly predictable pattern for a long time, and though his numbers were never good, we knew what to expect most of the time. We knew what Vidaza did to his Hgb and platelets, we knew when he needed a transfusion, we knew when he was getting an infection. I was always looking at his lab values terrified of the time when I knew things would eventually change but for so long he was quite stable.

As I mentioned before, my dad's lab values lost their consistency at the end of August. At first, we were hopeful because his numbers actually rose on their own, something they had never done before. We were hopeful that maybe Vidaza was starting to work though we knew that with his very reduced dose and inconsistent schedule that it was very unlikely. The scariest thing was the peripheral blood count and the WBC. Once they started to increase, it became obvious that he was converting AML. It was shocking how quickly those numbers can change and how high they can get!
I'm hoping that if your mom is still getting some stable times that her disease is not getting worse! Once my dad's disease changed it was very clear very fast that it was advancing to AML at a relentless pace.

My dad actually looked and felt the same until mid October. At that point, his WBC was around 25 and the peripheral blast count was around 65.
He just started getting one infection after another and within a couple of weeks he was on all sorts of antibiotics but nothing was helping him. His blast count was now in the 90's and WBC was around 50 even with hydroxurea. Like your mom, he didn't really want to know his prognosis, and he didn't want hospice because he was very private and had had bad experiences with them when my mom passed away. He was tired of being so sick and, as an engineer, he could easily extrapolate his lab values and figure out his own prognosis. He finally agreed to let us help him at home while "running interference" with hospice.

We lost him the day after Thanksgiving, but we were so grateful to have had him as our dad. He was amazing! He was always positive and kept his sense of humor through all of it! Sometime soon, when the tears don't run quite so easily, I will write a detailed description of his course because when we first heard his diagnosis, we were so lost and knowing one example of what someone experienced from beginning to end is so helpful.

So, we didn't get a happy ending, but my dad far outlived his original prognosis and was still able to enjoy many things until the very end. I truly hope your mom is just having a rough patch and that she still has lots of good times ahead especially with a great daughter watching out for her! Just know, that you are not alone and I do truly understand how hard it is for you! One of the worst parts of this disease is the not really knowing what is truly going on at any particular time - it is hard for everyone to live that way! Sending you hugs and hope!