Tuesday, January 10, 2012

Day 13

Piper continues to rock this. Her white count dipped a little to .14 today but that is common as her body works to welcome these new donor cells. Her rash is looking better though she looks like a greased pig from all the steroid creams being plastered upon her. Still no diaper rashes and still some pain when urinating. No fevers. And no eating or drinking though she did take two sips of water today...maybe more tomorrow. Her saliva has decreased except I still notice a lot when she is asleep and on my chest when she is snoozing there. Our only immediate concern right now is that her CMV levels have jumped to 3,100. This virus is brutal and we came into this transplant knowing it was possible for this to cause complications and concern....at this point it is more of a reserved concern and they plan to give Piper a type of immunoglobulin specific to CMV on Thursday as well as continuing her daily dose of antiviral. Hopefully she will engraft and will produce what is necessary before this becomes out of control. She has laughed and played and danced and giggled...but not napped. I am beginning to feel confidant in my assumption that the fentanyl is causing her to not sleep...each time they up her dose in hopes she will be comfortable, it backfires and she fights off sleep until she crashes usually around 6am and then she sleeps deeply on my chest until noon. And naps are a way far away thing...she hasn't napped since last week for me. Thank God my mom came today and pushed me out the door and towards Barnes and Nobles and caffeine.

I mentioned a few weeks ago about our friend Paxten who also is post transplant for relapsed infant leukemia. Yesterday things took a severe turn for the worse and she is currently in the ICU with multiple complications. My heart aches for the entire family, this all happened very quickly and as you can imagine they are exhausted and worried. Please pray for Libby, Blake and sweet Paxten...pray for healing and peace.

This is what we fight against...the complications as well as the cancer. And each family is so very tired and scrapping by on every little dose of hope thrown their way. Just pray for this family as well as my Piper. And be thankful if your biggest worry today was making dinner and balancing homework and bedtimes and such...because that sounds pretty wonderful to me.


  1. Praying Sus. I know it's all I say, but it's all I know to say. Praying for piper, and paxten too. Xoxo hope you got your Starbucks card!

  2. We're still lifting your beautiful family up to the Lord in prayer. Thank you for taking the time to keep us updated. Do you have special creams you use on Piper? Garrett has horrible rashes all the time and I have found that creams with Calendula in them work really well. Weleda and California Baby make a really strong diaper rash cream with calendula in it. If you can try different things, I would love to mail you some. I pray Piper's counts continue to RISE and that you can eventually overcome your coffee addiction :-) (but who really wants to quit drinking frappacinos?)

  3. Continuing to think of y'all and pray all the time. So glad to read that Piper has been dancing and playing! She is amazing. Hoping they can find something else to keep her comfortable that will also help her sleep. Continuing to pray for white cells and donor cells and for that complete healing for Piper. Sad to read about Paxten and will pray for them also. Love you! Heather