Monday, April 2, 2012

Update 4/2/12

I'm typing this with my left hand... My right hand is filled with the sweet warmth of Piper. I cannot seem to break apart from her so long as she breathes the short breathes the oscillator allows. She will squeeze my fingers at times or nod her head when asked a question she likes, such as " do you know we love you?" and will shake her head "no" when we ask her if she is wonderful... Because my spunky girl prefers to be called "fabulous" or "amazing". Both which she is so I shower her with these true confidences.


Pipers room is filled with family and friends who love her. We pray over her. There is worship music playing and the truths of God flood us. Despite the grief I cannot wish away, knowing that the words I hum along with are constant brings the sweetest peace I have ever experienced in my life.

Our room here at St. Jude looks out over the main entrance. When I feel my heart seize up, as it does at times, I walk to the window and watch the families and patients walking to the door. Some skip and some trudge and everyone is comprehensive of what battles are fought here daily. I have seen fellow infant leukemia fighters Wesson, Matthew and Phoebe and I plead for their sweet miracles...knowing they are in the very best place for one.

I last heard that our St. Baldricks event raised over $16,00. This is amazing and a wonderful encouragement to me as I sit with Piper. I would never wish this pain on any other mother and with this money raised we are trending closer to funding cures and treatments for pediatric cancers. That would be a balm to my blistered heart if anything could.

So we continue to wait. Feeling Piper and her soft self, so unlike the girl in the past and yet still fabulously alive. I find myself sitting with her and crying while smiling. Praising while pleading. Lovingly letting my daughter loose into the arms of the only One who can possibly love her more than I have.

51 comments:

  1. Thoughts and prayers for you and your family.

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  2. We are praying for sweet Piper and your family.

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  3. I have followed your family's journey through Laura and Shannon Shelley. Any words I can possibly say just seem dim and empty with the knowledge of what your family is going through. Just know that I am sending prayers and love for sweet Piper, Linley, you and Chad.

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  4. I continue to lift you in prayer as you face each new moment.

    We lost my brother in July in a rock climbing/rappelling accident - he was 29 and my only sibling. I know from being in my own unique situation of loss that connecting with others who have gone through it before is helpful. If and when you feel you could benefit, you might want to check out my mother's blog - http://ofmenandmountains.wordpress.com/

    Many people who have read it says she is able to give them a voice.

    I hate that you have to go through this. Nothing anybody can say will make it better, but knowing that we are here - thinking, praying, crying and rejoicing in the hope of the future - maybe knowing this will provide some comfort.

    Countless blessings and hugs,

    Deiah

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  5. I weep, I pray, for your beloved Piper and your family. Your grace and strength amaze me. May God continue to uplift you all and give you peace.

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  6. Your strength and faith are amazing. Praying for peace for you all, may God's grace and love keep you strong.

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  7. Peace and strength from afar. Prayers for sweet Piper and that courageous little body of hers.

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  8. I am praying for your precious little Piper and for your family as well.

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  9. Praying that this is a sweet time for all of you, and that it is nothing but love, love, love.

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  10. Peace to your family. The Lord's presence is right there in your room now more than ever. I am sad that your family has to go through this and will keep praying for you.

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  11. Praying for you. Piper, you are FABULOUS!!! and SPARKLY!! and AMAZING!!! I am in Canada and have heard of your story. Praying for strength, dear Jesus, and divine healing.

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  12. God bless amazing and fabulous Piper. May she and all your family be surrounded in God's love.

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  13. Praying for peace that only our precious Lord can bring to you and your family. Piper has become such a large part of my thoughts. She has blessed so many lives with her fight and her determination at such a young age. I pray for her miracle, whatever that may ultimately be. Only God knows what he has in store for Piper but I know it will be grand and glorious whatever his plan may be.

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  14. You are in his arms being rocked too. It's so apparent by the things you say. Only he can comfort you even though all of us out here would do anything if we could. I wonder if you in a way cherish every moment left, but want her dancing with him at the same time. I remember days and nights of wondering would there be a morning. I know you don't know me, but I love you deeply and feel I'm breathing with you as we bond.

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  15. What a fabulous and amazing little girl. Praying to the one who "has engraved you on the palms of His hands" ... His loving hands. Love to you all.

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  16. Praying for all of you!
    Love The Mills

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  17. Know that your story has reached across the nation and across the world... You have so many praying for your beautiful family, for precious Piper, for Linley, for you and Chad. From a stranger by name in Florida, but a sister in our Creator - thank you for sharing your story. We continue to pray each day unceasingly.

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  18. I can only imagine how hard it is to even find time or energy to update your blog - but thank you for it. We are thinking of you constantly. It seems that every song I hear makes me think of y'all, as do so many other things. We are praying and praying and our friends are as well. So thankful for the peace that God has given you and for the love and support that Piper and all of you have at this time. Thankful more than anything for the truth you shared at the end of this text about God loving Piper more than you even do. That truth has often comforted me in Sarah's journey. I love you, Heather

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  19. Praising God for sweet moments with your precious girl. Praying for you all. Loving you all.

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  20. I sit ,I cry and I remember this all to well as if it was yesterday that I was where you are. Somehow moms that have journeyed and walked the walk we have find that strength we didnt know we had. I personally believe it comes from our sweet children and that no matter what we will fight to the end with love, power and Faith. You are strong and that is where ur sweet Piper gets it from. I to NEVER wanted this pain to happen to another family I pray for Cures. I once had someone ask me how do you smile all the time or the families on AFLAC I say its easy we are Blessed and we relize it every second and every day. No more do we worry about little things like the cable bill ect... we know the Lord and is thankful for everyday we have with our children. When I first met you we instantly hit it off and I want you to know even though Im not their im with you in that room, in that hall even when you break down only for a moment in that tiny bathroom. Please kiss that sweet angel for me and tell her I think shes incrediable an inspiration and one hell of a fighter. I will continue to share her story with my Pypers every chance I get and one day we will run and swing right beside them in the brightest light ever. prayers are lifted and my tears are falling. your friend Mandy

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  21. Praying and praying and praying some more for Sweet Piper and her family and friends who are surrounding her with so much with love. May God continue to bless and love each and every one of you!

    Jackie

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  22. Still praying and thinking of you so very much, my heart breaks for you.

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  23. I too greatly appreciate your blogging even through this time. I check for updates so many times throughout the days and nights, and you are so selfless to keep all of us that are worrying and praying up to date on Piper's condition. I love your Piper so, and I can't stop praying for a miracle until she has gone to be with Jesus. I pray for you and the rest of your family through all of this. I long for Piper's pain to be lifted in whatever way God chooses. You are such an inspiration, and if one day, I can have even half of your strength and faith, it would be wonderful. Much much love to Piper and your family.

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  24. I have been following your blog for a few weeks. Please know that your family and little lady have been on my mind all weekend and continue to be in my prayers. Your words are so beautiful.

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  25. My heart just weeps for you and sweet Piper. I wish I had the chance to meet sweet Piper. I feel for you as a mother an live for you and your girls. God bless you all. You feel my thoughts an I take them to prayer. May Gods peace wash over you all.

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  26. I have learned about your family through a friend in Georgia. Your blogging brings a flood of memories as I am remembering my sweet little Samuel, who was received into Jesus's arms on a Good Friday, 11 years ago (on April 13th). I have been praying for your family and your sweet little Piper. I have cried for you and I've been on my knees for you. My children prayed for Piper tonight at the dinner table. I just wanted you to know that you have touched our family and we are lifting you up to our Heavenly Father, who loves you so very much. "...by His stripes we are healed." Isaiah 53:5

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  27. Be still, there is a healer.
    His love is deeper than the sea.
    His mercy, it is unfailing.
    His arms, a fortress for the weak.

    I lift my head to believe again.
    You are my shelter you are my strength.
    As I pour out my heart, these things I remember.
    You are faithful God, forever.

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  28. I've been thinking about your family all last night and all today. I saw this post on my friend (Hayley)'s Facebook and I keep wishing and praying for the best for you guys. I know that could possibly mean losing her to the Lord, but at least there will be no more pain. I hope there is a turn around though. I read the post on the 30th 2 times. It sinks my heart to know that families have to deal with this, and while in reality I know that they have, reading your story has really put the perspective in my head and heart. I pray you and your family will find strength in whatever comes your way! Psalms 27:1-3 (Best encouraging verses I know of, I read them and think about them when I am starting to feel weak or hurt). Best Wishes, Tara!

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  29. Oh, Sus. I have wept and prayed. Wept and prayed. You are never far from my thoughts but even more so in the last week. Praying that God would continue to wrap his loving arms around all of you. Tonight my song and prayer for you all is "In Christ Alone". Much love and many prayers from Rome!

    In Christ alone my hope is found
    He is my light, my strength, my song
    This Cornerstone, this solid ground
    Firm through the fiercest drought and storm

    What heights of love, what depths of peace
    When fears are stilled, when strivings cease
    My Comforter, my All in All
    Here in the love of Christ I stand

    In Christ alone, who took on flesh
    Fullness of God in helpless Babe
    This gift of love and righteousness
    Scorned by the ones He came to save

    'Til on that cross as Jesus died
    The wrath of God was satisfied
    For every sin on Him was laid
    Here in the death of Christ I live, I live

    There in the ground His body lay
    Light of the world by darkness slain
    Then bursting forth in glorious Day
    Up from the grave He rose again

    And as He stands in victory
    Sin's curse has lost its grip on me
    For I am His and He is mine
    Bought with the precious blood of Christ

    No guilt in life, no fear in death
    This is the power of Christ in me
    From life's first cry to final breath
    Jesus commands my destiny

    No power of hell, no scheme of man
    Could ever pluck me from His hand
    'Til He returns or calls me home
    Here in the power of Christ I stand

    I will stand, I will stand
    All other ground is sinking sand
    All other ground, all other ground
    Is sinking sand, is sinking sand
    So I stand

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  30. While we are strangers, as a mother and Christian I feel like I know you and your family in this time. I check for updates daily and share both prayers and flowing tears with so many others. I pray that your precious Piper receives the miracle of being healed and living a full life but know that if this miracle does not come she will be welcomed lovingly into His embrace and looking over you. I hold my 6 month old daughter tighter and pray with her for Piper each night. May your strength continue to grow and may you feel Him witg you every step of this journey.

    With much love,
    Lane

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  31. Just another person praying like crazy for you guys. As a mother of a two year old my heart is breaking for you and your strength amazes me. Although I guess sometimes we learn how strong we are when strong becomes our only choice. God Bless Piper the Courageous and her amazing family. A million hugs and prayers headed your way. Erin

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  32. Your precious family has been on my heart and in my prayers. Please know I am blowing kisses to Sassy Little Piper tonight, and sending up prayers for the whole Needham Clan!

    Lots of love,
    "Eee!"

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  33. A friend through Facebook posted about your blog and I'm so very touched by your family story. My prayers to you & to little Piper. My eyes filled with tears an my head bowed in prayer seein the photo of Piper. The Lord hears our prayers and praises and I thought of the second verse to one of my favorite hymn...

    " May our light shine in the darkness as we walk before the cross; May Your glory fill the whole earth as the water o'er the seas. From the mountains to the valleys, hear our praises rise to You. From the heavens to the nations, hear our singing fill the air."

    May the Lord bless your family and hear the praises of your hearts...

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  34. I came upon your story/blog via a facebook friend who was asking for prayers. I spent the better part of my day reading your blog and getting to know your amazing family through words and pictures. As the mother of three and grandmother of two, I can not even begin to imagine your pain mixed with joy mixed with sorrow mixed with hope. I have not been able to get you all off my mind and you can be certain that you are all in my my prayers. I pray for that miracle, for peace and for understanding. Whatever is God's will, know that your family has touched the hearts of hundreds who have never had the pleasure of knowing you other than through your blog or through friends of friends. Keep the faith and know that God is with you always. Much love from one mother to another...and to those precious babies and your husband. God bless you all!

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  35. Good Morning. I pray you are rested some this morning. Your words strengthen my love for God and my faith in Him and I thank Him for giving you the strength and faith you have and for sharing that with the World. You are preaching the Gospel. You are living the Gospel. Jesus does love your little Piper....and you. Stephen Smith

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  36. Reading your posts passed on to me via my niece, my heart breaks with your little family as you pass through this journey. I've never been through something like this, although I have watched at a distance the journeys of others who have made the same trek. I can only begin to fathom the pain, and surely don't want to minimize the suffering. But I also am seeing that recurring, abundant Grace that is holding you, enveloping you, sweeping you along into its Author's strong arms. I've marveled at it before in others....and my prayer for you all today is that, whatever this new day brings forth, His abundant Love will shine, as it is doing right now, as a testimony to your vibrant Trust in an All-Wise God.

    Our love and prayers are with you again this day....Collette Burch

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  37. This entry made me smile and cry at the same time. I would love to forever picture sweet Piper in your arms...where she rightly belongs. The word "oscillator" should never have to be used in the same sentence when describing a sweet and spunky toddler. But, I yield to God's sovereignty and find peace in knowing that His will is better than mine. Still, I pray for miraculous healing...the kind that defies all reasonable and medical explanations...the kind that we can all shout from the mountain tops that God is mighty and powerful, giving all glory to Him. And if indeed it is God's will for Piper to come home sooner than any of us would like, I know He will make something beautiful from the ashes that is her absense. For now, I praise Him for the precious moments you are sharing with her and I pray that it will continue to give you the strength you need for whatever happens next. This glimpse into your life has absolutely changed mine, and I thank you for that. You are still, to me, the most amazing family I will never meet. Many, many, many prayers and abounding love...

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  38. I have a very spunky Piper as well, and she's currently in remission from stage 4 lymphoma (diagnosed at age 8) She been through so much and still has so much to overcome... So, of course... stumbling upon your sweet Piper today, well, it's really touching my heart.... It's the strangest thing, but I truly hope one day my Piper and your Piper can meet...:) http://www.youtube.com/3pjs ....much peace and love ~ polly simon, polly@pollysimon.com

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  39. thinking of you guys today and praying that these moments with your Piper are the sweetest moments that have ever been. Ive been physically hurting for your family and I wish there was a way that I could help bear this cross for you guys...come Lord Jesus come.

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  40. I've followed you thru the Boone's and pray and check in on your blog daily. Yesterday was 7 years that I lost my sister to cancer. Hugs from an unknown friend!!

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  41. Our family is praying for you all. I am so so glad that you are able to hold her and snuggle her. This verse always comforts me and I thought maybe it will you too. Isaiah 41:10, "Fear not, for I am with you; be not dismayed, for I am your God. I will strengthen you, I will help you, I will uphold you with My righteous right hand."

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  42. You are so right to call her "fabulous" and "amazing." She is right to nod in agreement.

    Fabulous - almost impossible to believe, marvelous, astonishing, extremely good or pleasing, splendid

    Amazing - causing great wonder, astonishing, bewildering, perplexing

    She is absolutely these things to all who know her. She is because she was made by her loving, heavenly Father who is all these things. She is splendid. She looks so much like Him to me.

    She is absolutely these things because she is so greatly loved by a family who radiates the fabulous and amazing love of Christ. His love has poured out of you and filled her heart.

    She has astonished all of us as she fights and "bounces back" so many times against all logic and odds. She is marvelous.

    You have astonished all of us with your God given faith that continues to praise Him for His mercy and grace.

    She really is fabulous and amazing. I am praising God that He has made her this way. His fingerprints are all over her and we can know Him better by just looking at her.

    I am so grateful for the gift that Piper is and am so grateful that you share her with us so beautifully. What a fabulous and amazing Father we have. He makes all that He touches fabulous and amazing. How can we not be drawn to the One who defines this perfectly?

    Love you all so much!

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  43. An entire state away, your family waits and worships as your tiny three-year-old succumbs to the ravages of cancer. Sweet Piper has battled valiantly; the leukemia has just been too vicious in its attack. You write, recording for a world to see, all the struggles and the victories. How it hurts now to read your words. How much more it hurts you to write them!

    We have watched and waited, we have praised and prayed, and we have hoped with a hope that can only come from a faithful God. He has heard our prayers--those uttered by Piper's family, by friends, by friends of friends, and by strangers alike. He has not ignored our pleas, nor is He capricious in which prayers He chooses to answer. He is God. He sees a thousand tomorrows while we can only see the here and now. He sees the beauty that will come while we can only see the dark ashes that are our now.

    I do not know Piper, nor do I know you. I've never met you face-to-face, and, yet, I've never been so touched by strangers. I am a friend of a friend who has heard the story and wished and prayed and waited for God to move in Sweet Piper's life. And though He did not move according to my will, He did move. He has moved to make Sweet Piper's life count. He has blessed Linley's journey even as she has her head shaved to honor her sister's fight. He has used her father's strength and brokenness to show a father's love. And He has magnified her mother's hope and pain, giving words to both so that all could know and see how great is her God. Is there any greater purpose for our own lives than to touch others for our Father? Sweet Piper has served Him well.
    Sorrow is the bitter sting of letting go long before we desire. It lingers long, as we wait for morning, as we wait for joy, for He has promised that joy will come in the morning. And His promises are true. Lord Jesus, we wait for the Joy. We wait for You.

    http://apursuitofholiness.blogspot.com

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  44. I can say in all truth and honesty, that I have awaited this post, finding myself since Sunday, reaching for my phone, more times than I can count, for an update about Piper. I continue to pray for you and your family as often as I think of you, which seems continual since I read your post on Sunday that left me so broken and with a burning ache for you as a mother. I keep begging God for a miracle, my heart wont let me pray any other way. I pray for Linley, at such a young age has experienced so much that will stay with her forever and I dont know if I should cry or smile, because she has shared love and memories with her sister that can never be replaced and cry for a future for these precious siblings. Chad, probably the most forgotten as sometimes our men are, I lift him up to the Comforter...how difficult I know it must be for him cause Daddys are very special in the eyes of our daughters...the Knights in Shining Armor, no matter how old we get. I truly, with heart and soul, lift you all to the Father through tears that flow as I think of each of you.

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  45. I only know of your family through Nakia Biles. Your family's strength through all this has been amazing. I received an e-mail today and as I read it, I thought of your family.

    Potato Chips
    A little boy wanted to meet God. He knew it was a long trip to where God lived, so he packed his suitcase with a bag of potato chips and a six-pack of root beer and started his journey.

    When he had gone about three blocks, he met an old man. He was sitting in the park, just staring at some pigeons. The boy sat down next to him and opened his suitcase. He was about to take a drink from his root beer when he noticed that the old man looked hungry, so he offered him some chips. He gratefully accepted it and smiled at him.

    His smile was so pretty that the boy wanted to see it again, so he offered him a root beer. Again, he smiled at him. The boy was delighted!
    They sat there all afternoon eating and smiling, but they never said a word..

    As twilight approached, the boy realized how tired he was and he got up to leave; but before he had gone more than a few steps, he turned around, ran back to the old man, and gave him a hug. He gave him his biggest smile ever..

    When the boy opened the door to his own house a short time later, his mother was surprised by the look of joy on his face. She asked him, "What did you do today that made you so happy?"
    He replied, "I had lunch with God." But before his mother could respond, he added, "You know what? He's got the most beautiful smile I've ever seen!"

    Meanwhile, the old man, also radiant with joy, returned to his home. His son was stunned by the look of peace on his face and he asked, "dad, what did you do today that made you so happy?"

    He replied "I ate potato chips in the park with God." However, before his son responded, he added, "You know, he's much younger than I expected."

    Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. People come into our lives for a reason, a season, or a lifetime!

    I hope that the moments you have with Piper are precious. I continue to pray that God will give your family peace. I hope and pray that you will continue to see God's smile on that precious little girl's face. Have some potato chips and root beer. And enjoy His presence with your little girl.

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  46. I am praying for your family daily!!!

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  47. You don't know me. My son has infant ALL also, and so we belong to the same horrible club. I know your blog through our group on FB. My husband and I read your blog. You have beautiful writing, and your emotions become our emotions. Your tears become ours. There are no words I can say to take away any of your pain... but through your words, I know how much Piper is loved. How lucky she is to be in your arms, to have your strength. I pray for you, Piper, Linley and your husband.
    marla

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  48. Crying with you and praying for God's unfailing love and grace so big that we cannot comprehend. You are loved by many, Piper!
    Jana

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