Day +8

WBC- 0.1
Hgl- 9.1
Hct- 26.6
Plt- 5 (38 after today's transfusion)
ANC- 0.0

Today was more of the same. The days melt into each other in an almost dreamlike way, making us all forget what day of the week it is and making us lose all concept of time. Claire still has a lot of pain, swelling in her feet that makes it uncomfortable to walk the few feet into the bathroom, and very dry itchy skin. Even little scratches on her skin become bothersome because she doesn't have any platelets to heal them. She still doesn't like to talk. Her platelets are low every day, requiring transfusions, but her red blood counts are just hanging on. The transfusion threshold for red blood is a hemoglobin level of 8 or lower. She is still fevering on and off, and her heart rate is a little elevated as her body tries to cope with what is happening. She received another dose of Lasix. They measure everything going in against everything going out to try and maintain a balance. Nothing unexpected yet, thank goodness. Despite all of this, her spirits are pretty good, when she can stay awake. She was hoping to do some things on her computer this afternoon, but so far she has just looked at a food network magazine, watched a little tv, and helped me with a project.

People have asked how Faith is doing. She is great. The BMT was last Monday, and by Wednesday she was playing in her orchestra concert. She was back at school on Thursday. She only took the prescription painkillers for two days, then she was ok. Today she is swimming in a meet. It's amazing how quickly you can recover when you are healthy! On Tuesday she and Ella came here to attend a beautiful mini concert given by violinist Jenny Oaks Baker and her kids. (Her dad, Elder Dallin Oaks, and her mom were also there.) People are very generous with their time and talents here at Primary, especially at the holidays. Claire has already had a giant stocking filled with gifts delivered to her, and a nurse told me that one of the conference rooms is so full of donated gifts that you can barely open the door. Members of The Grizzlies (our professional hockey team) were visiting the kids today. I myself have a special connection to this place. Primary Children's Hospital was originally started by the LDS church. As an LDS child living in the very non Mormon states of Texas, Oklahoma, and Kentucky I collected my pennies all year so I could put them in the cardboard Primary Children's Hospital bank at church. So I have definitely donated myself. If I can figure out the volunteer situation I hope to do some singing here this month. Seasons for giving and seasons for receiving. It feels nice to give, even just a little, especially when we are receiving so much.

And life goes on. David and I went to Faith's choir concert Friday night while our daughter Hannah and her husband Jose stayed with Claire. We both commented that it felt really weird to be out among people. It's as if the hospital has become our reality and everything else feels strange. It will be that way for Claire when she eventually comes home. Worse, even. And, believe it or not, last night we had an outside pipe burst and our entire basement was flooded. No joke. (Don't worry. It's being taken care of. No need to call.) But life goes on. You think it should stop, but families still need to be fed, dogs still need to be walked, the service engine light still comes on in your car, and pipes still burst. And you just keep putting one foot in front of the other.



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