Friday, March 16, 2012

Update 3/15/12

The human body is such an amazingly well oiled machine. The balance that sustains life is beautiful in its intricacy, I am seeing this. I have a new appreciation for the details that go into our very ability to breathe, thrive and grow, despite the beatings that our physical self may sustain and an even greater praise for the One who creates something so close to perfection.

Especially if this body is a two year old who has been receiving daily and weekly and monthly abuse in an attempt to keep alive and alive so well.

Especially if you are Piper.

She is beautiful... Already a miracle because she has thrived when many said she would never make it to her first birthday. When leukemia has invaded her 25 lb body not once, not twice but three times. When despite having lungs much more sick than she ever let on, she smiled and played and requested our hands in hers while soothing herself to sleep.

Today has brought a good weaning of the oxygen and pressures both which in turn showed her to be stable enough to have the pulmonary doctors get a sample of the fluids found in her lungs. They have found her to be very sensitive to the dopamine which helps control her BP so they are constantly required to manipulate the dosing as her pressure will dip quickly and then rise. Pipers daily lung and chest X-ray showed about the same amount of fluid on her lungs which is actually good (ish) since she had been steadily accumulating. Her Tylenol has been changed from every 4 hours to as needed in an effort to see what the trend far she has done well since her 6:30 pm dose. This evening has been busy with changing oxygen levels and blood pressures as Piper adapts to each new addition of fluids her body requires...again, this intricate dance to maintain her sweet life. Each nurse, doctor and medical staff that walks into her room is attached although any of you previous medical care personnel know this to be impossible to girl is magnetic.

At this point, most absolutely the most heart wrenching of any season I have been blessed to have with my girl, we are stuck in the crossroads of worry and hope. Will Piper once again amaze the doctors with her resiliency or will the body that holds the sweetest two year old I know simple cease to work together? There is no way of knowing and this land of limbo causes a restlessness that I hate vehemently. In each other instance of bad news and Piper, we have always been able to look over at her little self and be encouraged that she was there... There and strong and smiling and keeping us pushing for her cure. This time she is sick; she cannot request a backscratch or me singing "you are my sunshine" or taking a walk while holding her daddies hands or leaning into Linley while watching yet another Barbie movie.

What she can do is get her heart rate up when I stroke her arm or shoot her blood pressure up when they move her too much and she clearly would prefer to be left alone. And while she smells of saline and betadine and medication, she still feels like my Piper when I kiss her nose or nuzzle her ear.

She is here still and I praise only God for this act of mercy He has handed us.

But oh, I miss her so much. I cling to the promise of God that He never leaves me or forsakes me and most absolutely He is even more close to Piper as she rests and hopefully gains the strength necessary to fight the next battle. And its only after His timeless commitment to me and mine that I hear and cling to the doctors who are encouraged with Pipers progress today.


  1. Dear Sue, I have been following Piper's story and praying for you all this year.(I am a friend of Janie Lineberger.)
    My heart aches for you, and I pray to our dear Lord that he will reach his hand to your precious, beautiful little girl and heal her.

    I pray that this wonderful song will comfort and bathe your spirit.

    With love to you, a dear sister I may never meet this side of glory.
    Jacqui xxxx

  2. As tears stream down my cheeks, I marvel at our God of Grace Who continues to increase and honor your faith.
    We are praying for for healing for precious Piper who is a Miracle.

    " 'Tis so sweet to trust in Jesus!"

    My love to Piper, Linley, Chad and you
    Jean Drury

  3. Amen- praying for her healing. He is near ... He cannot help but be. Love to you all & nose nuzzles to both of your girls.

  4. Tears streaming down my face as I read this but I'm yet again amazed at your constant faith and the peace that can only come from our God and Father. Praying for a miracle.

  5. Praise the Lord the King of Heaven that His presence is being felt by you all and that Piper has had improvement that pleases the doctors. What wonderful news. Praying fervently. Much love and many kisses.

  6. Susanna, I am so blessed by your faith and trust in our Lord. I will continue to be praying for your little Piper and your family. May you feel the loving arms of our Father about you and find rest.


  7. you are beautiful your heart i adore.
    please kiss both your sweet one's for aunt miriam

  8. Prayers continuing that your sweet girl continues to make progress!


  9. Again, more tears as I read your beautiful and heartfelt, as only a mother can write when it comes to one of our own....still praying and anxiously awaiting for your next post. God bless you always...