Pit

I am unable to use my laptop tonight , so this post will be short as I am blogging from my phone. I don't feel like writing, but for those of you who still read this; who still pray for our girl- here is an update: It has not been a good day. I have tried to keep positive and even played a little Peak and Pit with myself ( a dinner table game we play as a family, telling each other the good and bad of our day). The good- I got to meet a new friend in person today ( more on that another time) and I was inspired by simply watching her with her brave, precious boy. Another peak is that we could have been given devastating news today, and we were not. So then, why do I feel so devastated? I think it is because I am exhausted and beyond frustrated and sad. Elizabeth's biopsy shows that her marrow has not recovered at all. Not even a little bit. Ugh! It is still hypo cellular and although there is "no convincing evidence of malignancy", her cells are misshapen and there are some new additional abnormalities. The smears have been sent off for FISH and cytogenetics testing, to once again rule out Myleodysplasia and other disease. I cannot take hearing that we need to just continue to watch her labs very carefully. Fix the marrow! If only it were that easy. As if I wasn't feeling a put enough, tonight Liz's Pediatrician called to let me know that her labs today show that her Prealbumin has dropped to 13. What in the world on?! On TPN and Lipids, her Prealbumin ( a protein nutritional marker) should be going up, not down.... certainly not anywhere as low as 13. Much more to write, but I need to go prep her IV for the night. If you are still following Liz, thank you.