Friday, March 23, 2012

Lungs 3/23/12

Piper has taken a few steps back...and I would be lying if I said I wasn't scared. I know we are supposed to be taking it a day at a time but when the day gets scary it's hard to not get overwhelmed and fearful of the days to come.

This is where I am at right now.

I am scared and worried and almost frantic at times in my prayers...

As a mommy you want nothing more than to help and love your children and each time Piper struggles I want to pick her up and console her. But I can't. I haven't held my girl in over 10 days and holding her hand and rubbing her legs and kissing the small amounts of skin that I can get to between the ventilator she has on her face is not helping my ache to just pick her up. I want to feel her chest rise against mine and her fingers twirl into my hair. I want to smell her sweet breath on my neck and hear her hum herself to sleep.

Pipers input and output are ridiculous. She went from 13.8kilos at 11:00 last night to 14.5kilos this morning... All this extra fluid makes it hard for her to breathe and seeps into her lungs. While there are no signs of infection or sickness this mornings X-rays showed an increase in fluids everywhere...including her little lungs which otherwise look good.

All of her other organs continue to look strong. The bmt team came by and told me that there is no longer any sign of my NK cells though the initial infusion was one of the most successful that they have had. So we pray that the 7 days she had them roaming her body was suffice. Dr. Leung would like to get a bone marrow sample to see what is happening as her counts should be recovering soon. The goal is to get my girl strong as quickly as possibly and on to a transplant where she can get a lifelong dose of my Nk cells and beat this.

I was hoping to see Piper continue to improve. Having bad days makes everything hurt and my mind is constantly filled with worry and questions. I am attempting to focus..focus on how great my God is and that this will not alter Him. To focus on that which I know to be true which is really the only way I will ever be able to cope. I know nothing of the future but I trust that God is true and trustworthy and that is how I will calm my own rocky soul.

Waterdeep (psalms 131)

Oh Lord my heart is not lifted up
My eyes are not raised to high for Thee
I do not think on things to great or marvelous
Or matters too difficult for me

But I have calmed and quieted my soul
Like a weaned child is my soul within me
I have calmed and quieted my soul
Like a weaned child with its mother is my soul within me

O Israel trust in the Lord
From this time forth and forevermore
O Israel trust in the Lord
From this time forth and forevermore


  1. Sending prayers of strength to you all, most especially to your little fighter girl Piper.

    Love form the other Needham Family

  2. My heart aches. I'm sobbing. I soooo wanted to keep hearing good news. So please God...please. Do good things for Susanna, Chad and Linley's sweet Piper. Please.

  3. I know you through friends and friends of friends. Your Piper has been mentioned often and prayed for fervently, as has your entire family. I ache in the beauty and in the pain of your words.
    Continue holding on to God, clinging to your Father. He is the Keeper of your faith, the Healer of your child, the Lover of your soul, the Answer to our prayers. I wait for our amazing, miraculous Creator and Sustainer to move in Piper's life. We cry out for Healing, Lord Jesus!
    God bless you.

  4. Still praying for your little "fighter" girl, Piper. Praying that this is a set-back, but tomorrow things will be improving once again.


  5. Amen sister. Amen. Praying for you all, and especially for little one...