Wednesday, December 21, 2011


Four out of Six of the radiation treatments are done. Almost there. I am so happy to be working our way through those things. Not that they have been horrible but rather because she has two sessions each day, one at 7am and another at 3pm. She is unable to eat or drink anything prior which is no problem with the first session but is a doozy between sessions when she is tired and hungry. We are keeping her pretty busy but its only been since today that she is allowed to even leave the room although she cannot still go to the playroom because of her lingering cough. So we suit her up in a yellow gown and a blue mask and off she roams. Thankfully they have allowed us to bring the play kitchen from the playroom into her room and she has been miss busy making us coffee and cheese...the only things she offers so I may not have high hopes for her being my susie homemaker. oh well.

Other than that we continue to have problems getting blood return from her port. Not sure what the deal is but I wager that it was partially the fault of the lady who accessed her in surgery. She was ridiculously bad at it. Today when Piper was sedated for radiation they attempted to access her and were able to get some TPA (clot busting agent) into her port and will leave it there until tomorrow morning when she is sedated again to see if that helps it along. If they are still unable to get blood return then they plan to remove the port before tranplant and neutropenia. Remember that her CVL is a double lumen so she will still have multiple lines to do transfusions and antibiotics and chemotherapy.

She is sleeping really well at night and I am pulling the bed up to hers so that she can still reach out and touch me if she wakes up but so that I dont have to spend the next 4-6 weeks sleeping on my left side. I am grateful for that one. Pipers appetite is slowing down but she does not seem nauseaus. I told a friend today that I know things will get exposentially worse so I am thankful for each day that goes by so smoothly.

I am thinking alot of the verse in Matthew (6:34) that says "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Its a good reminder to all of us when we get fearful of what is to come, both imagined and real. I also like to channel Scarlett O'Hara and say “Fiddle-dee-dee! I won’t worry about that today. I’ll worry about that tomorrow. After all, tomorrow is another day!” ...'course I leave out the fiddle-dee-dee most of the time unless one or both of my girls are having meltdowns in which case I belt that out and they stop what they are doing for a minute and look at me like I am nuts. Whatever slows a meltdown works for me.

One week from today and it will be Pipers re-birthday. A big that cannot get here soon enough. And meanwhile we will continue to take each hour as it comes and attempt to not go mad in this tiny room with a silly little two year old.


  1. Thinking of you all & praying for you...

    you gave an address to send Piper something... what address could I sent something to Linley as well?

  2. I've SO wanted to leave you a message (personally) but this will do. Words don't do this justice, that's why I wish I lived closer to reach out...literally. My heart will be burdened with you, standing with you & your family & prayer & trusting for the best is at the forefront. I cannot explain to you what is going on inside of me, in regards to your baby & your family. Let's just say, I'm fully invested in you all, from afar, & you've become part of my life in ways you'll never know. You are one strong & amazing lady, my friend. May the storehouses of God's best be poured out over you & especially your baby girl. Late night hugs to you.