Friday, March 30, 2012

Update 3/30/12

Last night sleep avoided us. Chad and I rested, allowing our bodies to drift off guiltily...waking quickly as our eyes search out Pipers form and the numbers on her monitor. Each time my eyes opened I remembered...details and parts of the past days and hours.

And as I have cried I have had to focus. Deeply and consistently for fear of falling apart in the face of disappointment. Deeper than ever.

Breathe in
Breathe out
Breathe in
Breathe out

Physically I now know that my right hand and fingers will go numb when my ears hear grievous things...I know to not lock my knees as I will fall over and perhaps never bring myself to get back up again. There is a chance that I will begin to hum the same songs that I sang to my Piper as she slept against my breast and then to move on to the silly ones guaranteed to have her smile and sing along with. My heart will feel as though it has stopped and perhaps it does stop from time to time. It certainly can not feel the full effect of my hurt.


I prayed to conceive this child for over two years. I rejoiced over her conception. I relished her twirls and thrusts on my womb and I eagerly delivered her to the world...I praised God only for her. Each day almost since her birth I have cursed the leukemia that insists on coursing through her small body. Bigger than that even I have loved her in spite of knowing that she would probably never get the chance to grow up. I did this because I love her and hoped for her.

Last night after many hours of medications and fevered brows, Piper was taken off the ventilator and placed on the ocillator. This is life support...this is a very loud machine breathing and working for my Piper. Without it she would not live...she needs it. I need her to have it as I cannot deal with other options at this moment.


Since being placed on the oscillator, Piper has been taken off the dopamine and the epinephrine. Her heart rate has stayed stable as has her blood pressure. They are weaning the nitric oxide and the oxygen pressures in an attempt to place her back on the ventilator. It's a lofty goal.

Today Pipers white blood count is 1000...unfortunately 30% of this is leukemia blast. Not only is she fighting to breathe but she is fighting mass amounts of leukemia which has infiltrated her now swollen liver and is throwing off her chemistries. In a healthy situation they would quickly give her chemo and get her to transplant. Because Piper is more sick that she ever has been she is not given that option at this time...her heart, lungs and liver are all compromised and would simply shut down.

We have small goals of healing organs and attempting transplant. We have the option of taking her off of the oscillator and allowing her to breathe independently until she no longer can. Or we have the option of healing organs and bringing Piper home. Of course, what happened last night can very easily happen again and if it were to, the chance of resuscitation is lower each time. I wish there were no options....options mean wrong choices and I am tired of fearing doing just that.

We continue to breathe in and breathe out and sob. Each moment I hold Pipers needle stuck hand I ache for healing and a future. She is currently alive only because of a machine and this is enough of a cause to sit back in disbelief. I miss my girl...I cannot believe we are here and I cannot formulate many prayers beyond pleading and begging.

Please sweet Jesus.

21 comments:

  1. I have no words, but I am praying!!!!

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  2. I am so so sorry. I will continue to pray for your sweet little girl. Cancer is so cruel and robs of what we love best....one precious minute at a time. I hope and pray for the best and that her body will heal enough for transplant.

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  3. Praying and praying and praying some more! Hoping and hoping and hoping some more that your prayer is answered!

    Jackie

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    1. Allow others to pray for you. Do what needs to be done in these moments and that is only sitting with your precious Piper, holding her hand, touching her courageous body and signing her sweet songs, as I know, beyond a shadow of a doubt, that she hears you.

      Abundant prayers of peace and strength for the journey.

      The other Needham Family.

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  4. Praying for you all and sending love.
    Lord breathe your peace into this dear family I pray. Deep deep peace.

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  5. Prayers are constant from here in New Jersey. I pray for the day you can hold your sweet child again and listen to her giggles. Stay strong and keep your faith in Jesus.

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  6. Words can not express my sadness for a family I do not know. Tears don't even express what this post does to my soul. Prayers going up!!!

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  7. Sus and Chad, my heart is just shattered for you guys!! I am currently pregnant, which doesn't help my emotional responses, but I cannot imagine being in this situation with one of my 2 toddlers! Praying Jesus, the Great Physician, will miraculously heal her small, sick body! Also praying that if His will is different than our desire, that He will be your comfort and peace through this process!! I think I would be praying the same, Sus, Jesus, please, Jesus! What more words can a mother's heart cry out when hurting so deeply? I am praying thru my tears with you guys!! Mandy (Haver) Lopez

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  8. I will be praying for you and Piper my heart is full of love for all you guys may God comfort you in times of need and may he give you tge strength you need for Piper me and my family will continue for pray and hope for the best and may God bless all of you!!
    WITH LOVE THE STAMEY FAMILY

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  9. Our hearts are broken with yours......we have no words other than we continue to lift up Piper and you all......pleading for God to work a miracle. Heavy hearts tonight.

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  10. Praying for Piper's healing. Praying for you and your husband as well. May God give you peace and guidance during these times.

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  11. We echo your prayer "Please sweet Jesus" and more as we lift you up before the throne. Praying that He will give each of you what you need for every moment.

    Much love,
    The Morecrafts

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  12. Praying for your sweet baby my friend. Praying too He will continue to meet you both right where you are as the "Spirit Himself Intercedes for us with groanings to deep for words." Much much love & prayers ...

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  13. No words for you other than our hearts are breaking for you and our prayers are going up for you and your beautiful girl.

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  14. Our father who are in heaven hallowed be thy name thy kingdom come thy will be done, on earth as it is in heaven. Give us this day our daily bread and forgive us our trespasses as we forgive those that trespass against us. Lead us not into temptation but deliver us from evil. For thine is the kingdom the power and the glory for ever and ever. Amen

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  15. The Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. Romans 8:26
    Yes! Holy Spirit, we ask for and covet YOUR intercession! Only you know what to pray here. We just weep and weep... There are no words.
    Susannah, He holds you in His hands even now. His Spirit is holding you together even now. Especially now.
    His love never fails.

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  16. My heart breaks for you. I am crying and praying with you. May you find God's peace.

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  17. Your sweet Piper is in my prayers, and so are you, dear parents. Praying God's love to hold you so tightly. Praying for His grace and peace for all of you.

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  18. Hi,

    I found out about Piper from Jacob's site. I am soo very sorry the cancer has spread so quickly!! I pray God will give her an earthly miracle.

    Have you heard about Cole's Foundation? We are a team of volunteers that pray for families who are affected by pediatric cancer and other childhood illnesses. You can visit www.colesfoundation.org to read about sweet Cole and his family's mission. Please consider registering Piper & your family. It can be done very quickly from the home page.

    ♥♥ Love in Christ!! ♥♥
    C.O.L.E.'s Foundation (Caring Openly, Loving Eternally)
    www.colesfoundation.org
    www.colespages.org
    Email: sandy@colesfoundation.com
    Sandy Daron

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  19. Love and prayers from Loganville!!!!!! XOXOXOXOXOOX

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