And down again...

Tessa had an MRI of her small intestine last Saturday, and of course they did not see anything. Sigh. I still can't decide if it's good news or bad news when they come back with nothing. But that's already old news.

Today we drove back up to Stanford and spent another day at the hospital. Tessa got some repeat x-rays to check on the progress in her bones. It doesn't appear that they are getting better or really worse. She also had labs drawn. We were primarily looking for her hemoglobin levels, as last week it seemed they had dropped way down. We were expecting that Tessa was going to need another transfusion this weekend. Instead her hemoglobin levels came back a little higher than last week, but still lower than the week before so we're not in the red. Instead what was found was astronomical white blood cell levels.

An increase in the white blood cells is expected when taking steroids. A normal white blood cell count is between 4500 and 10,000. You can expect a count in the 20,000s when you add steroids to the picture. Tessa's count came back at 76,000. The doctor is very concerned and has ordered another bone marrow aspiration and biopsy for tomorrow. They are looking for leukemia again.

Every time you think you have begun to accept the way things are, they change again. I had finally established a routine and began believing I could live day to day and create a life for Tessa. And then it all falls apart again. The rage is visceral. It is like a snake in my belly weaving an intangible web. My impotence leaves me weak, and I just want to scream at someone. I look at the swollen face and body of my baby and my heart breaks again. Every time someone tells me how good she looks I want to shake them and yell "Her skin in stretched tight over her bloated body because of the horrible medications she has to take!!!" How can you move through the stages of grief when new things keep happening to fling you right back to the beginning?

My poor baby. I don't even know what to pray for anymore.