Out of Body Experience

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IMG_2111I don’t know how to write this post.

I am exhausted.

“You can choose to be done with chemo…you can choose to take her home…quality of life…hospice in Montana.”

These are bits of what words I had to try to soak in this morning.  Sunday Allistaire’s blasts were 5-6% and could be potentially explained by a recovering marrow.  Monday they were 16% and it was obvious she was not in remission.  I felt overwhelmed at the idea of another round of chemo before transplant and the fear of it not working either.  This morning her blasts in her blood were 24%.  I suddenly thought maybe we needed to bring Solveig out here to Seattle to see Allistaire because it has already been a month and a half since they’ve been together and if all went ideally from this point forward, it would be at least 2 more months.  I thought Solveig should come right away before we started more chemo.  I wanted to ask Dr. Pollard.

Dr. Pollard called and agreed it would be good to bring Solveig out, “unless [we] didn’t want to do any more chemo.”  It was at this point the conversation turned to a place I had not expected.  I will write more later but basically, the next step is the last option and the truth is – it’s a clinical study, it’s a long shot.  We have no way to know if it will work.  Each time you go through chemo and it doesn’t work, it lessens the likelihood that the next step will work.  Eventually, you come to the end.

Sten and I decided that he and Solveig would fly to Seattle tomorrow morning so we can spend some, “quality time,” as a family together.  It may be the last time we spend together doing some fairly normal things.  We don’t know what’s ahead for Allistaire.  I want to throw up.  I wail silent, dry heaving wails.  My face hurts and my brain can’t stop thinking of how I don’t know how to live without her.  i don’t know how to do this.  How do I spend, “quality time,” without sorrow that strangles my breath?  Sten asked Solveig if she knew why they were flying to Seattle and she responded, “yes, to see Mommy and Sissy.”  Then Sten told her that this was true and they were going now because “Sissy’s medicine isn’t working and we don’t know how long we will have with her.”  How can I tell you what it feels like to have your 6-year-old crying and telling you on the phone that she, “hopes Sissy doesn’t die,”?

I am one of “those people.”  The people “out there,” that this happens to.  Bewildered.  You look around you and you realize, no, this is real and it is your life and your child and you simply cannot fathom it.  I lay with Allistaire at the beginning of her nap and rub her back and I absolutely can not imagine her flesh cold and dead.  I can not imagine looking out my kitchen window and seeing only one little girl playing, alone.  I fear I do not know how to be the mom Solveig will so desperately need me to be.  I don’t know how to go out into the world and live with part of my core amputated.

Sten and I do not feel done.  I look at Allistaire and I think, she is too alive, we cannot yet be done. Her preliminary bone marrow test results today showed 50% blasts in her marrow.  We started with 1.1% and went up to 25 and here we are at 50%.  Tomorrow she will likely get and EKG and an Echocardiogram.  Results from her spinal fluid and the flow cytometry should be back.  We have a meeting at 3pm tomorrow with Dr. Pollard and Michelle, from the Pediatric Advanced Care Team to discuss our plan.  We hope to have several days of taking passes out of the hospital and enjoying one another before we start this next round of chemo.  This last round of chemo.  Allistaire’ s ANC was actually zero today so we still have to be very, very careful.  As Sten noted, we have worked so hard to keep her safe, we cannot abandon those efforts now, despite being given the option to leave the hospital all together.

I call out to the Lord over and over, but ultimately He has not promised me her life here, nor has He promised to take away the pain of her loss, though these are the things I ask for.  This is not an “either/or” situation.  This is an “and” situation.  I know pain and I know comfort.  The comfort has not taken away the pain but it surrounds and holds the pain.  The pain is acute and slicing and ripping and stinging and the comfort does not come at the same pace because at its very nature it is eternal, it is beyond this time and the finiteness of this reality.  But I look with hope for comfort whose dimensions far surpass this thing that threatens to suffocate the life out of me.  I hold to the comfort that Allistaire will not be an angel, but a child of God fully dwelling in His presence with fullness of joy and life.  I hold to the comfort that I will see my beloved again and that this is not truly the end.  I hold to the comfort that God will redeem this and the beauty will one day outweigh the dark agony.  I hold to the comfort that though I cannot see how, God will carry me, day by day, by day.  I hold to the comfort that He stands with me now.  He stands in the circle of doctors doing rounds.  He has not forsaken me.  I pray that this ragged, gaping hole in my heart and gut will be filled with His grace and that somehow, in the very midst of what feels like my own death, God would overflow and streams of living water would meet the mouths of the parched.  That out of this death, in it’s myriad of forms, life, life abundant would take root.  Lord hear my prayer.IMG_2116

60 responses »

  1. Jai, I am so sorry!!!!! There is nothing to say, but I am praying for His healing hand on this beautiful child! You are loved and adored little Allistaire. You are loved and adored Jai.

  2. My heart sank and my eyes filled with tears as I read this update…as a mom of 3, my heart breaks for you and what you are now faced with… I will continue to pray for peace and comfort, and that God would wipe away every tear you shed, and for Him to wrap his arms around your precious Allistaire and breathe healing into her body…praying for Solveig–that God would be there for her in ways you cannot be right now, and that He will give you and Sten the strength to face each day, for His mercies are new every morning…

  3. Oh it’s like I can’t even breathe, Jai 😦 I’m so sorry 😦 On my knees in fervent prayer with you and for you. May your family time be filled with joy and peace. May God wrap you all in His loving arms and bestow upon you His perfect peace.

  4. Oh dear friend, I cannot find words. Our hearts are broken with this news. We have and will continue to pray for all of you.

  5. My words, they fail me. They are so insufficient. This I know and yet they are all I have to tell you, that my heart is heavy and breaking, that I am praying for healing and comfort, and that I truly believe hope remains.

    May your precious time together cloud the sadness and despair, at least for a time.

    Know that you are being held up and loved.

  6. Oh Jai, my heart is breaking. There are no words. Just prayers and groans to our Father. May He hold you tightly.

  7. Oh, Jai! Crying for you now. Praying for each of you as you walk through this dark, dark valley. May our Lord give grace upon grace as you rest in Him.

  8. I am so overcome with sadness for you. Sobbing…. You, Allistaire, your entire family are in our prayers. I want so badly for God to do a miracle, and am begging and pleading with Him to do so!

  9. oh Jai . . you are so right. It is not an either/or. Pain doesn’t go away but comfort can surround it. You have been and will be in my prayers. My heart is heavy, heavy, heavy for you. All I offer is words I found comforting the other day “Yet I am always with you; you hold me by my right hand. You guide me with your counsel, afterward you will take me into glory. Whom have I in heaven but you? and earth has nothing I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 73:23-26 With Love in Him, Joan Schafer

  10. So sorry for the sad news Jai. (crying for you) We pray, somehow, God will sustain you ALL through this. He is more than able. Lots of love, Liz

  11. I just wanted to say I’m praying for you and your family…. I knew Jonell in college in Bozeman and because of her posts about Allistaire I decided to join the be the match registry…. I’ll be praying.

  12. Our family anxiously and nervously awaits the updates on Alistaire’s condition. The post you wrote recently about your return to Bozeman gave us a feeling of hope. So quickly the news of her current condition can steal that from you. Our children continue to pray of their own accord multiple times daily for your lovely daughter’s healing and return to full health. We struggle with our perspective as we consider how you must be feeling as a family. Again, I am amazed by the indwelling of his Spirit in your perspective Jai. We are praying more humbly now and with fewer words in hope that the Spirit will intercede on our behalf for your benefit. He is with you, this we know but I pray that you, Sten, Solveig and Allistaire are comforted by his presence.

  13. Jai, All of us in your mom’s circle of Community Bible Study friends are praying for sweet little Allistaire, and for you, Sten, and Solveig. I’m praying for you to feel the LORD’s presence as you walk this difficult, difficult path. Praying that He will sustain you, that you will feel His presence, His love, and His care. I have no doubt He weeps with you, Jai. And I have no doubt that He will carry you through these coming days. “So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” (Isaiah 41:10)
    With love in Christ,
    Nancy MacPherson

  14. Jai, I am so sorry to hear this news. I weep for you as I read and can only imagine the pain you are suffering. When we are weak He is strong… lean into His strength, weep on His shoulder. You are an amazing woman of God! Praying for all of you!

  15. we will be praying for all of you. May the good Lord give you strength and hold you close as you travel this most difficult and unimagineable road, God be with you and that precious Allistaire, Solveig and Sten.. With C
    hrist’s love, Sandy and Tara Massena

  16. Jai and Sten, There are no words….. I am filled with sorrow as I read this latest update. We love y’all and continue to pray for your precious family. It has been way too long since we have seen you all but please know that you are never far from our thoughts or prayers. Allistaire is absolutely beautiful! In Chirst, John and Sue Batastini

  17. Oh Jai…I don’t know that you would remember me but I worked at TMC when you did and just heard about what is happening. I am weeping as I sit here reading your hauntingly, agonizingly truthful and heart rending words…and my heart is aching for you and Sten and your precious girls. I will be praying for you as you embrace your family time, even as you look forward to what seems to be inevitable. I am praying for God’s intervention and healing, knowing all the while it is His to choose another way as He cares for your little girl and for each of you in turn. May God’s arms enclose you as only He can, today and in the days to come.

  18. People in the Tri-Cities of Washington are praying for your comfort and encouragement that death is swallowed up in victory in Jesus. We plead for life for your family. The Lord carry and strengthen your breaking hearts.

    Adam Linabary

  19. Jai,
    My heart is breaking for you and your family. I continue to pray for God’s miracle for your family. Thank you for being willing to share your life with us.

    Love,

    Tammy Niemeyer (BSF class)

  20. Jai, I am at a loss of what to say after reading this post. My heart is breaking for you and Sten…I will be praying for your family. Enjoy your precious time together with your daughters and keeping on relying on the Lord.

    Celeste (Watson) Jones – TMC Oaktree

  21. blessed me in some dark days:
    Psalm 27:13-14 (NASB)
    13 I would have despaired unless I had believed that I would see the goodness of the Lord
    In the land of the living.
    14 Wait for the Lord;
    Be strong and let your heart take courage;
    Yes, wait for the Lord.

  22. A friend of mine posted a link to your blog on fb. I am sitting here with tears rolling down my face. You and your beautiful family are in my thoughts, prayers, and hopes.

  23. One of my friends just posted this verse and I thought it might be an encouragement to you.

    These things I have spoken to you, so that In Me you may have peace. In the world you have tribulation, but have courage; I have overcome the world.” -John 16:33

  24. I love you. I’m praying for you and with you. I’m crying for you and with you. Come, Lord Jesus.

    Jesus! what a Help in sorrow! While the billows over me roll,
    Even when my heart is breaking, He, my Comfort, helps my soul.

  25. Brokenhearted for you. Lifting you up to our great Savior, the One who bore our grief and our sorrows. Grateful we have a God who is unlimited in His sympathy for our pain and unlimited in His power to help us. Praying for His mighty power to be at work in your heart and mind and in sweet Allistaire’s body. Much love to you, friend.

  26. oh Jai, tears stream with so much sorrow. Love you and praying for you. Hold her so tight and Kyle, Maggie and I are praying so much for you!

  27. I sat here stunned wondering if saying anything at all would be best. I don’t have words. I can only say what my heart feels. I saw the pictures of your precious little one and she looks just like my middle daughter. And in that moment I felt your love for her. Mother to mother, we all want to take this pain away. Jesus is there. He knows. None of us do but HE does. I will pray and cry along side you.

  28. Bless you for sharing your heart! We weep with you, not as strangers to pain, but as survivors! We are weak, yet He is strong. Our faithful Savior knows your pain. He will walk with you, and carry you, and be made strong in you. I’m sure of this! Many will walk this same path, we will pray you feel His arms around you. Bless you during this dark time of suffering.

  29. my husband and i pray for all four of you by name nightly.

    come lord jesus, come.

    *********

    JJ Heller’s Kingdom Come

    Ashes, ashes, we fall down
    It always feels too soon
    But when we walk on golden ground
    All will be made new

    Hallelujah
    Hallelujah
    Hallelujah
    All will be made new
    Life is but a dream at best
    Morning’s coming soon
    Kingdom come will bring us rest
    All will be made new

    Hallelujah
    Hallelujah
    Hallelujah
    All will be made new

    All sorrows and sighs
    Will fade away into the night
    And all will be made new

    Hallelujah
    Hallelujah
    Hallelujah
    All will be made new

  30. We don’t know each other, but I understand your pain as a mother of 3 little ones. Brings me to tears knowing what you are facing.

    Psalms 73:26 My flesh and my heart may fail, but God is the strength of my heart and my portion forever.

  31. Jai I just found your site after a few Master’s Alum posted it on facebook. You may remember me, I lived in Oaktree my freshman year (back in 2000!) when you got engaged! I was the quirky, loud, laughing girl with short brown hair who screamed in her sleep and bounced around a lot. I am just now reading about your situation with your dear daughter, and having just given birth to my first child 4 weeks ago, my heart is aching for you and your family. You will be lifted up in prayer by my husband and I…the Lord is near to those who weep and mourn and who cry out to Him! Take comfort in knowing that no matter how much we love our children, Christ loves them even more. We will be praying for you all during this difficult time. Sending much love your way from North Carolina.

  32. Jai I just found your site after a few Master’s Alum posted it on facebook. You may remember me, I lived in Oaktree my freshman year (back in 2000!) when you got engaged. (I was the quirky, loud, laughing girl with short brown hair who screamed in her sleep and bounced around a lot.) I am just now reading about your situation with your dear daughter, and having just given birth to my first child 4 weeks ago, my is aching for you during this time. My husband and I will lift you and your family up in prayer, knowing that our God loves our children even more than we do. Take comfort in knowing that the Lord has been by your side during this time- “The Lord is near to the brokenhearted” Ps. 34:18. Sending much love your way from North Carolina. – Amber (Douglas) Vanderslice

  33. Jai
    I have no words to comfort – but I pray with your family continuously my sister as we have yet to see what God will accomplish – my heart aches with you but my Spirit rejoices with the Truth of a God who feels out deepest pains … Love you sister

  34. Jai, you don’t know me, but I was the one who make Allistaire the hat and mask. I have been following your journey and your family has been a constant on my mind. I am sending many prayers to God for you and your family. May God be with you!!!

  35. Jai, my heart is breaking and all I can do is cry out to the Lord. Dear Lord we cry out to you, please heal Allistaire. We know God you are in control and are bigger than any sickness and that you have the power to heal. Give Jai, Sten and Solveig the strength, comfort and wisdom they need right now.

    Psalms 121 “I will lift up my eyes to the hills- From whence comes my help? My help comes from the Lord, Who made heaven and earth. He will not allow your foot to be moved; He who keeps you will not slumber. Behold, He who keeps Israel Shall neither slumber nor sleep. The Lord is your keeper; The Lord is your shade at your right hand. The sun shall not strike you by day, Nor the moon by night. The Lord shall preserve you from all evil; He shall preserve your soul. The Lord shall preserve your going out and your coming in. From this time forth, and even forevermore.”

    I will continue to lift you all up in prayer!

  36. Oh Jai I don’t know why you would ever read this..but if you ever do I want you to know that all of us in BSF in Bozeman Montana were praying for you and Allistaire and Sten and Solveig today, Wednesday. In group we didn’t do our lesson, we just talked and cried and prayed in solidarity with you and your family. I always thought the long goodbye would be preferable, all those kisses, pictures, hugs, memories. Today it seems like you all have been through some kind of protracted anguish…Do come soon Lord Jesus and not just for Allistaire. xxooRobin

  37. Allistaire, you are such a beautiful child, I read your mothers words of heartache and love for you and I can not imagine how much your illness and potential loss hurts her and tears her apart inside, you are not my child, yet I look at you and feel love for you. I pray to our loving, faithful God for your healing, and may He bless you through the doctors and medical procedu healing, I pray for your family, may you all find peace, but most of all may God bless you with His Peace and His Love!

  38. So sorry to hear about your precious baby girl. I was in Oaktree in 2000-2001 with Stephanie Wahler. My prayers are with you and your family during this heartbreaking time. God is the mighty physician, may His Will be done. God Bless, Much Love. Jessica

  39. There are no words. Only tears, and prayers, and clinging tight to God’s word and His promises for you.

    2 Corinthians 4:16-18 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

  40. On our knees praying….for comfort, endurance, strength….
    I love the words of the new Chris Tomlin song and the picture they put in my head: “the God of angel armies is always by our side.”
    Desiree

  41. Dear Jai, Sten, Solveig and Allistaire,
    We were gone all day so I just opened my email and as I have in the past, started reading to my husband Joe and could hardly continue. Our hearts are heavy with sadness and concern for all of you. You have many friends who have opened their hearts to you. We will join them with our prayers that our loving, caring Heavenly Father will be holding you in His arms. In His love, Joe and Bethel

  42. I don’t know you, but I know of the place in which you now sit. I have written a similar post that began with those same words. “I don’t know how to write this post.” for there are no words, no way to write that which your heart screams simply can’t be. I am so sorry you had to find those words.

    We have a mutual friend in addie bedford – my husband died three years ago from cancer; we too were from Bozeman and did treatment in Seattle.

    In the midst of my darkest days my friend gave me these words – they are what came to mind as I heard your voice, pain and broken heart. “there is a wind that would steal away your very breath….but there is Another, that will wrap your sadness into the tenderest embrace of grace and sing you into healing…”

    So very sorry for the deep ache and unemaginable pain. My thoughts are with you and your family.

  43. My heart is so heavy for you. I know of your daughter’s health because we are praying with the Petra back in Bzn. I saw your update because I am friends with Christi Dahl. I am praying, more and more for you and your family. I know God’s plans are far from simple, I wish there were simple things that can keep you going, keep you from hurting, show you how loved and cared for you are. Instead I will do the most simple thing and most powerful and I will be in prayer for you and your family. God has never failed and will never fail. His love is everlasting and his care and compassion for you and your family in unending. You are covered prayers and in so many other people’s hearts. May God’s grace be upon you, may he show you his peace. With love, your sister in Christ, Becky

  44. A friend posted your blog on facebook and I am grieving for your deep pain but so very proud of you for choosing to glorify God through your suffering. That is truly our only option, even when the pain is gutwrenching. I will be praying for strength and healing and for the Lord to wrap his loving arms around your heart as you still struggle to be “mom” each day to your precious daughters. He is able to see you through this and He will never ever abandon you. Hold on and cling to Him…..with love,

  45. I do not know you. I stumbled on your post from an friend on FB. Tears are streaming down my face and I have said a prayer for you. Sometimes we merely need to be reminded of what is important in life and what is not.

  46. Feels like just yesterday you handed me two quarters and told me it was time to get a shower. However, a lifetime ago. I miss you my friend. You are true warrior of faith and grace and Allistaire a blessing. Blessings keep our awareness of life’s holy potential ever present. They awaken us to our lives….

    Daily prayers of strength and rest,
    The Mullikens, Bill, Heidi and Sam

  47. Jai, our hearts are breaking for your pain and for your little one. Please know we are praying for all of you. Cancer is prevalent in my family. I know this battle well. May I recommend a book for your consideration? It was great help to our family and to others we recommended it to…I hope it proves helpful to you as well. It is called “Knockout: Interviews with Doctors Who are Curing Cancer” by Suzanne Summers.

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