Saturday, February 11, 2012

"Glorious"

Three days ago I left the clinic after a routine visit with my Piper. While it was a long visit there was nothing out of the ordinary brought to my attention so she and I went for our daily drive around town. Piper and I both look forward to these drives and look for buses to follow, for birds to sing to and for a myriad of other things that are out of her usual spectrum...she loves to hear music so we have been listening to alot of Jesus Cultures Awakening album lately.

This was the day I heard her singing so sweetly and cheerfully " Jesus, Jesus...I love you" in the backseat with her little eyes closed above her big sterile mask.

This was also the day I was feeling almost giddy. Everyone I was running into was so impressed with how amazingly my daughter was doing...how could I not get wrapped up in the excitement and optimism that was filling up each conversation and thought around me? So while I enjoyed my Starbucks and Piper enjoyed her fast moving view, I listened closely to the lyrics of Glorious. I found myself moved by the encouragement I was hearing and today I found myself weeping with same lyrics for the simple fact that the truths in the songs had not changed.

Our circumstances and our perspective was significantly more difficult and I am finding it hard to feel giddy about much of anything given how broken my heart is, but the truths, Gods truly glorious truths still reach the ache my soul feels. I was reminded last night by a friend that I need to surround myself with what I know to be true of God and His character and what He has proven Himself to be. These lyrics calmed me. Gods glorious truth has not changed since Wednesdays giddy drive around town...He is holy, He is worthy of my worship despite the deep sadness I feel towards the plan I see unraveling before me. And ultimately He is so very, very, very good to me.

Glorious
Hope fills my soul
The love that You've shown
Bring refreshing like the rain
Peace floods my heart
I've known nothing apart
Apart from Your goodness, God

You are glorious
You are holy, holy
The heavens shout
You are worthy, worthy

Your love frees my soul
And fear has no hold
For You have broken the chains
Now joy fills my life
Your Spirit, Your Light
I'm undone by the kindness of Chirst

You are glorious
You are holy, holy
The heavens shout
You are worthy, worthy
My soul cries out
You are holy, holy
The nations will shout
You are worthy, worthy

At the sound of our praise
The Heavens will shake
And the earth will move


As far as the ugly detail surrounding this, Pipers second relapse, I have few. She has been admitted to Egleston for 5 days of chemo in the slim chance that we can get the blasts found in her bloodwork down. She had a bone marrow aspirate and they found her marrow compacted with 89% leukemia...this from 100% donor cells on day 30. Her peripheral bloodwork has risen from 11% blasts on Wednesday to 38% on Friday. Pipers leukemia is not only back but it is angry and aggressive. At this point we have a few options, though none are being shared with us with much optimism. Because we chose to attempt this last chemotherapy, we are open to the option of going to St Jude's for the Nk cells therapy clinical trial. I have spoken with them and Piper fits the criteria and they are very willing to take her on...Unfortunatly in order to be a part of this study she must be 60 days post transplant. Piper is only 45 days post transplant and at the rate it is taking over, she would not make it another 2 weeks to get to St Jude, thus the chemotherapy in the interim. If this round does nothing to the blast we see in her bloodwork we have exhausted all known options for a cure. We are given the choice to go home either on oral chemo to prolong Pipers little life with as few symptoms as possible or we can go home and allow this beast to consume her.

While St. Jude's has apparently been successful with some patients in doing this Nk cells therapy, we are unwilling at this time to chase down rabbit trails. I will have a phone consultation with Dr. Leung about the details a nd I am going to be asking him for serious consideration of Piper and the magnitude to her disease. We have no desire to lose our second born daughter of whom we have fought tooth and nail for but we also will not continue to put her through more and more suffering just to lose her in the midst of that. In light of the options we have, we are asking for fervent prayers. No parent ever imagines their self in this position and for 2 and a half years I have allowed myself to hope we never would have to.

We are here in the midst of gut wrenching descisions and choices...there can not be two made, we have to weigh the odds and the costs and hope with every fiber in our being that we will never look back with regret.

14 comments:

  1. I read this with blurred vision I cnt seem to make the tears stop it feels like us all over againe though each child is different a mothers Love is not ! I am praying strong, long and steady you can believe that We were also gave the same options and even checked out Texas for a chemo at home (which we chose to do) in hopes of giving us more time to research and come up with a Cure. As a Family we had battled this ugly monster since my Pyper was 6 wks old and I had never allowed myself to believe anything else was possible except complete HEALNESS until BMT told me those words that took me to my knees but yet their is still HOPE but I didnt wnt to contine to raise Pyper in a hospital when she ached for her room, her daddy, her brothers and sisters her swing, Church all the things she ached for when I would tell her we was heading home from inpatint. it was different when she was a baby. for those who dnt know it is the hardest decision EVER to make of course Pyper dnt know why momma cldnt hide the tears some I wld tell her it was my darn makeup but we had such a bond I somehow now know she knew something was wrong dnt get me wrong nt once did we give up, or stop meds, clinic visits, phone calls trying to find somthing but I did choose to go hm to battle thats what Pyper wnted and I dnt regret it I cldnt see her hurt anymore in the hospital setting without certianty.I am here for you guys and praying constantly and support any and every choice you make because you are the only affaicate your sweet Piper has either road you choose will be hard but stay postive but dnt let the saddness consume you enjoy every minute and every second you have on this journey tk in every smell and every touch. Please keep up blogging and no its ok to get MAD Praying for healing for Piper from her head to her toes and Peace for you and Chad in the days to come Luv ya

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  2. I read your post today to my boys & my husband. We will continue in prayer for Piper & your family. Thankyou for your encouraging words, He is mighty & glorious. We will savor today's sunshine, in thanksgiving for God's creation, praying for Piper.

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  3. Praying hard for you all. Gathering others to pray as well...
    Jen Bailey

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  4. Praying for your sweet family and your precious Piper. Praying for a miracle, as we know that with a word God can heal her little body. Praying for Him to carry you all through each second of each day and for a peace that could only come from Him in a time like this. We will be thinking of your family continually and praying.

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  5. We have been thinking of Piper and your family so much. She is continually in our prayers. I can't imagine all that you are going through but I do know that you are making all the right and perfect decisions for your sweet daughter. Never doubt that! You are doing everything right and Piper is so lucky to have you as her momma. Praying for her earthly healing fervently.

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  6. I heard about your blog from Alicia Larson (my cousin by marriage). Your family & beautiful Piper are in our prayers continually. I know that our Lord has His arms around your whole family and I pray that you all feel His love and strength guiding you.
    The Jordans

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  7. My mommy's heart is heavy for you all. I will be praying and praying and praying, even though we have never met. Being a cancer momma myself, I want you to know: We are all family in this community, a community we never chose but we will forever be bonded in the fight to end this sorrow that is childhood cancer. So much love to you all. May every moment be wrapped in support and love.
    Always, Amanda

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  8. Susanna, we are praying for your family. We have a lot of mutual friends from Redeemer and even though we no longer live in Athens, I still get the prayer chain emails from Redeemer. I have been praying for you, for Piper for some time now. Each time I receive an email about Piper I am left in tears for her and you all. I don't know what it's like for you and Chad to watch your sweet baby girl struggle so much, but my heart aches to imagine. The Lord is with you and I pray you feel his loving hands today.
    I don't understand the whats or the whys or the hows of much about this broken world, but I do know that God your Father loves you all so much.

    Blessed is the Lord, who daily bears us up; God is our salvation. Psalm 68:19

    love,
    elizabeth manley

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  9. I saw your link through Facebook. I don't know you or your precious Piper, but I am praying fervently. Today has been a trying day for my family and your faith and strength has given me hope. God wastes nothing. May the Lord give you wisdom, peace, and comfort as you walk this road daily.

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  10. Praying for Piper and your family from NJ.
    Just reading your story I can tell without any doubt you and your husband will make the best decisions for your Piper.

    May you feel the love and strength of family, friends and God.

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  11. Newish to your blog, but my heart is aching. Praying for your peace and wisdom. For your comfort and hers.

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  12. Found your blog today thru Abbey's sweet story. My heart goes out to you. I pray that you feel His strong arms around you and your sweet family.

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  13. following you guys through the colbert family. we are praying for God to shower His grace all over your family. my heart is aching for you guys.

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