Monday, January 23, 2012

Day 26

First off, did you see my girl Piper in the last post? That was 24 days post transplant and she looks, acts and is simply amazing.

Here we are at day 26. Piper has engrafted, hopefully with total donor cells. She is showing a small interest in food so her TPN and lipids are being lowered each day. Tomorrow at 6am she will begin taking cyclosporine orally verses through her IV. She continues on her bevy of antibiotics and antivirals as her body continues to fight off fevers....albeit only that, no vitals concerns. Tomorrow she is going to be having a ct scan with contrast to rule out fungus somewhere causing the fevers though Dr. Haight seems to feel it is a CVL problem. It is not out of the question for it to have been contaminated when it broke last week...Surprise! Surprise! Thankfully it seems that the assortment of antibiotics she is already on are keeping whatever it is from becoming a full on infection as her cultures continue to be clean and clear. At this point they are trying to decide whether to pull her CVL and use only her port or keep the CVL or pull the CVL and replace it...we should have a decision tomorrow. We should also have results from Pipers CMV blood work within the next day or so. Pipers little lips and hands and feet are incredibly dry and are peeling...we are keeping them moisturized but it's tricky keeping a two year olds little hands away from their peeling lips. Thankfully, she loved her some chap-stick and applies it liberally...often veering from her mouth to her ears and such.

We are getting closer. With the prayer that this transplant was a success and that her little body is filled with donor cells, Piper is on the path to recovery and being cancer free. There are few milestones on a transplant journey, as so many children differ on their treatment and success rate but still it is good ticking the days off and praying we are ticking leukemia off the charts once and for all.

In addition to praying for my Piper, please pray for the rest of my family also. I have literally only been trading off keys and daughters with Chad for over a month now and we are missing each other. A million thanks to my mom for helping us work in a lunch date last week...I was please to know that we can still recognize each other and converse like a married couple. Also pray for Linley. She is as much of a trooper as her sister and is missing our normal family dynamics probably more. And Chad as he balances being Mr. Mom and his school schedule.

Paxten Pearson, our sweet little infant leukemia friend is still in the ICU in Kansas City. Each day her mom updates us with Paxtens progress and each day is filled with ups and downs and worries and hope...I find myself often with them on my mind. Please pray for them and follow Paxtens story if you would like

Day by day we are making this...I am confident that "the Joy of the Lord is my (only) strength" as we are all weary in the flesh but chose Joy over being downtrodden and depressed. It's the way we will roll, of you will.

There is no space for that in my heart when I rely on God and His infinite wisdom and presence, despite our daily circumstances.


  1. sus - here in damp chilly england we eagerly check in each evening to follow sus comments.i am sure its impossible to actually imagine what the last couple of years have been like without it being your own kids involved.however thanks to your very intimate emotional and no holes barred honest writings , with young daughters ourselves we can at least relate to how you might be feeling.having followed your lows we are delighted now to read about increasingly positive developments over recent weeks.our fingers remain crossed and thoughts are with you that the excellent progress continues all the way to a full recovery.paul,linda,amy and emily

  2. I just love seeing those pics!!! Xoxo