... Because you have to know that with Piper there has to be all of the above. The good is that my girl was great on the trip here. She watched Madagascar, she took pictures of the inside of the transport van, she played with stickers and she napped. The whole trip only ended up taking about 6 and a half hours and I was probably more uncomfortable and snippy than she was. (imagine that) Unfortunately , by the time she and I arrived at St. Jude she was one bored and grumpy kiddo... Only really perking up when her sister arrived to play with her and to share the pancakes Piper had begun asking for somewhere in Alabama.
Now the bad. Pipers temperature continues to run about 37.7 or so and she didn't sleep well last night. Her cultures continue to be clear but she is still neutropenia so the antibiotics continue. Her appetite is fairly non existing apart from small nibbles and sips of water throughout the day. She was NPO all through the night because of an early morning bone marrow aspirate, a chest X-ray, a EKG/echo and last but not least, a skin biopsy...
The skin biopsy is being done because Pipers rash is out of control. It now covers 75% of her body and looks red and angry. This is the very, very, very ugly I am speaking of. I cannot explain how frightening it is to see this all over her body and not know what it is or how to treat it. Dr. Leung doesn't seem to think it is gvhd or leukemia based but is still keeping a very close eye on it. He changed up her antibiotics as well as her steroid cream and feels confident that the chemo and NK cell therapy will continue as planned next week unless she worsens. I am personally praying for answers... A diagnosis will go a long way to helping. to figure out how to deal with it and this, get rid of it until all the chaos of treatment begins.
I am enjoying my time with Linley in the midst of many visits prepping and clearing my body and bloodwork for being Pipers donor. Today they took 17 vials of blood and I praised God that I am not easily bothered by this. I was informed of the procedure they will follow for both the NK donation and for the stem cell transplant... Neither of which I am nervous about but both of which I fervently pray to be successful.
At this moment I an so very tired. I would love to sleep all day but Linley and I have appointments beginning at 7:30am and running all day... Big plans to visit Piper at some point and big plans to find a grocery store.
I wanted to tell everyone that we are being flooded with notes, emails and calls... Please know I read each one but am running through the small amount of energy that I have and am thus, falling behind on responding. Please know each gift, prayer and well wish is heard and felt and most of all appreciated, despite my slow rate of acknowledgement.