Monday, February 20, 2012

Transporting two year olds: probably not fun.

Piper and I are being quite the modern family sitting here in her room at Egleston. She is happily watching yo gabba gabba on my phone and I am able to update this lovely blog and still cuddle...thankfully Piper continues to feel wonderful. She was thrilled to see me and cheerfully waved her daddy put the door and off to Linley. If not for Pipers surroundings I would be able to forget where we were and the ugly truth of what we battle against.
She continues to keep her fevers down though not in a normal range but there have been no spikes and thus, no tylenol given. Pipers rash is worsening and I am attempting to not be concerned. Graft vs host disease can be a serious situation and I am fearful of dealing with it beyond it being a bothersome rash to Piper...Dr. Chiang doesnt want to begin her on steroids as it can compromise her eligibility at St. Jude's and that is the ultimate goal at the moment. And Pipers cultures grew something which means there is or was, an infection in her little body. They havent gotten the sensitivities back as to what it is but she continues on antibiotics and we are hopeful that will fight for Piper until her counts begin to rebound from last weeks chemo and before next weeks preparation of treatment.

With all of these fancy complications my sweet Piper is rolling around with, we are unable to be discharged to head to St Jude. They would rather have her medically transferred so tomorrow at 9:00am the St. Jude transport ambulance will be picking myself and Piper up and we will begin the 8+ hour trek northward. When I inquired as to how exactly one goes about transporting a two year old in the back of an ambulance there were talks of gurneys and 5 harnesses and I am fearfully confident that they don't mean a 5 point car seat harness...I imagine we will find out soon enough. In the meanwhile I am downloading many movies and books to the iPad and I packed a big bag with snacks and games and other things to keep meltdowns to a minimum.

Here's hoping Piper will be able to hold herself together as well. :)

Chad and Linley will be close behind the transport and hopefully we will be able stop as often as our nerves require. At this moment Piper is still quite awake although I am quickly fainting. Despite how tired both Chad and I are in this moment and all others, we both know there is quite a fight up ahead. Busyness and worry and exhaustion will soon be a part of our daily world, even more so than it is now. None the less we remain hopeful that this is the cure for our girl and we are gearing up for the necessary trials to come.

Mainly we are confident in the direction God is guiding us and we are so very blessed to know this God who leads our every little step.


  1. I pray for Piper continually throughout the day. She is on my mind a lot. You all are. Praying for peace and strength today.


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  3. Just wanted you to know that your family is in my thoughts and prayers. I hope everything goes well for your sweet Piper.


  4. You all and especially sweet Piper are in our prayers. Just hoping and believing this St Jude journey is just the cure for your beautiful girl.

  5. Hi, I don't know you guys but I found your blog through a friend, I have been praying for Piper and following your blog daily and will continue to do so. May the Lord bless you with strength these coming days!

  6. I continue to pray for you and Piper. My Sunday school class @ DuluthUMC is praying too. Hope for safe travels, wisdom, comfort , peace for you all.

  7. Never a dull moment in your life is there sweet mama?! Though this part of the journey be long it will not last forever... I am so very proud of you no-shoes-anna, you kinda want to make me more courageous.