Finally a few answers

Avarie had her appointment today. I was expecting her red blood cell count to be really down because yesterday she did nothing but literally sleep all day and was extremely pale. But actually her counts looked okay, so no transfusions today.

We finally have the genetic testing results back and that is good news. Everything came back good, it is NOT t-cell. We are very happy about that and actually a few of the genetic markers that came back were actually really good. It's long and technical to explain it, so I'll just leave it at that it was good.
Unfortunately, not all the news today was good. They have the preliminary bone marrow results back, we are still waiting for the exact number, but the preliminary results show that she still has between 10-20% of leukemia cells in her marrow. The Dr.'s were hoping for 0 or close to it the first week and where definitely hoping for 0 this week. The fact that she hasn't responded as fast as they like means that she is now definitely classified as a "slow early responder". That means that they will have to intensify her chemo. We don't know how much yet, she still has to finish the 29 day treatment course that she is on, but at the end she will not be in the low category that we had hoped for. She could possibly go into the average category if she starts responding better, but most likely she will be in the high category. I honestly don't know a lot about this category and what that completely means. I didn't really pay that much attention to the high category because it just seemed so unlikely that she would end up there. The Dr's were quite confident that she had the best form of leukemia to treat and that her blood counts at diagnosis were so good they thought she would be an easier case of leukemia to treat. Now they didn't say this to me directly, I just picked up on this from comments and information they have given to me over the weeks. This does unfortunately decrease her survival odds, but they have assured me only slightly and that is why they will be increasing her chemo to try to make up for the decreased odds.
She is also being given a referral to a physical therapist. I don't know if I have really mentioned this in past blogs or not. Avarie does not walk or sit at all right now. It has been 3 weeks since she has really walked. Last week I did have her walking a little to the bathroom and back to the couch, but it was completely supported by me. Her legs are like noodles. She has lost a lot of muscle tone due to the chemo, her immobility, and her weight loss. She continues to lose weight. We are now at almost 5 pounds she has lost. You can really tell when you look at her, especially with her shirt off. I have two main goals this week with her, to get her more exercise and to get more calories in her. I am going to start doing leg exercises and make her start walking to the bathroom more. The food thing, she is actually eating a fair amount of food right now, more then she ate before all of this, but her body is burning so many calories fighting this cancer that she needs more calories to make up the difference. Her blood counts reveal that she needs more protein, this has always been an issue with Avarie, she's not much of a meat lover, but we've got to get her to eat more protein. I am going to have to get creative. If she only liked ketchup it would make things so much easier, but unfortunately she can't stand ketchup.
These are those beautiful hats that were made for her. She was wearing the pink one for her Dr. appointment today. You can also tell how her face is starting to get puffy from the steroids. This will go away in case anyone was concerned about that, its just a temporary thing while she is on steroids.