We had our clinic appointment today and met with Dr Chen. He says he's "satisfied" with her progress so far. After having an in depth discussion about Ava, I am reminded of how serious her diagnosis is.  Other than her not eating, she seems so healthy and happy (most of the time). Its easy to forget what's really going on inside of her. She has definitely handled her treatment well, has shown little side effects, and has had a steady increase in her blood counts...but just one too many of her own cells can be bad.
When Ava was first diagnosed,  I just couldn't understand why she would need to have a bone marrow transplant and go through such a hard process just to fix her platelets. That was my first question to the doctor actually, why can't she get platelet transfusions throughout her life? Besides her absent platelets, she was fine. We learned what CAMT was and what it could lead to if left untreated. If left untreated, not only do you have the platelet issue, but within years your other 2 cell lines drop also. All three cell lines dropping (platelets, red cells, and white cells) is called pancytopenia, so no matter what, she would need a bone marrow transplant. CAMT also can lead to leukemia in later years. It is very important to not have host cells (Ava's own cells) left over in her blood/marrow. This is why the doctors want 100% engraftment.  Dr. Chen will be happy with her marrow remaining the way it is, as long as the donor cells stay in the 90th percentile and above.  But her T -cells (lymphocytes) need to make some changes and thats what we are waiting on. Any time her own cells have a chance of being higher than the donor cells, there is a risk of her cells attacking Audrey's cells. This could also set the stage for leukemia later in life...something I can't even begin to fathom.
 Im so used to worrying about all her everyday little issues, the feedings, pooping, nausea, her meds...I forget how complicated the big picture really is. I left her appointment today in tears, feeling so scared and depressed. To say that we are so far from being out of the woods is an understatement. I know we are in the right hands, I just pray she moves in the right direction. This baby is so sweet, and so precious...she has to be okay.
*btw, it was a good eating day today...thank goodness because I don't think I could have handled one more thing.