I reached behind the seat, in the dark car and rubbed Allistaire’s leg. “Are you okay Sweets? Are you in pain? What are you thinking?” Her sweet little voice and tender eyes respond, “I will still love you when I die.” I look over at Sten and see the glassy sheen of tears filling his eyes. She was desperate for a new doll with a pretty dress. Already, so fast, I am discovering it impossible to say no to the desires of a little girl who may not have much time left in this world. When she pointed up to the top shelf and said she wanted the doll in the white dress, a ragged cry caught in my throat. A doll in a wedding dress. “She will never get married,” stood the stark statement in my mind. We walked hand in hand back through the parking lot, my arm bobbing along with her joyous skips. “Mommy, I’m learning to skip in gym,” she declared with triumph. Immediately I saw in my mind her uniforms for school hanging in her closet. She will probably never go back to school. With certainty she will never, ever go back to preschool. She only got to go to two of her dance classes and less than a handful of her swimming lessons. I don’t know how to bear it. No, she is not dead, not now. But death is already coming to rob, to shred and tear and ravish. I think of her room, of her closet with the walls covered in her school work. She only counted to 10 for the first time the other day. It will never matter if she can hold her scissors right or read. It will not matter that her ovaries could never give her children.
Throughout this long day, Sten and I both so hoped, thought somehow there might be a way out of this. It just seemed too awful. We had literally just begun to taste of a real life all together. For so long I silently berated myself for making her cancer such a big deal. In my Bible Study discussion group, my every response seemed tied back to this agonizing battle. It has consumed nearly everything in our lives. It saturates every decision, every hope, every plan. I fear I may be swallowed whole by it or torn bit by bit into thousands of tattered pieces. I do not know how to bring this little girl home to die. So many points of her life flash into my mind. I remember so clearly sitting in my blue chair reading one evening. I felt her move inside of me for the first time. I was only 13 weeks pregnant. I remember her so sweet adorable round head and beautiful cheeks. She loves to snuggle in bed on Saturday mornings and no pleasure is greater than opening my eyes in the morning to see her bright blue eyes smiling back at me. Lord help us. Father help us.
Dr. Gardner called at 5:30 to say that she had called the pathologist. It would be another 30-60 minutes. They just had so many samples to run through. She told me that the radiologist at Children’s who looked at Allistaire’s X-ray from Friday did not think it looked too abnormal. We were not sure what that meant but stowed it away into our basket of hope. We were in the toy store when Dr. Gardner called back. There is .9% leukemia in her marrow. Just shy of one percent cancer, but it doesn’t matter. It doesn’t matter that 99% of her marrow is healthy. There is present there a marred thing, a mutated ugliness that cannot be stopped and it will not stop until it is all there is and there will no longer be red blood cells to carry oxygen or platelets to bind up wounds or white blood cells to protect against the constant invaders of bacteria and virus and fungus. I watch her play with the train set. We have told her her sickness is back. As I embrace her, she says she is sorry and then returns to the trains oblivious, utterly oblivious of what will likely come.
Allistaire’s leukemia is not a high enough percentage to qualify at this point for the DOT1L inhibitor trial. She must have 10% or more to qualify. Dr. Gardner says she will call us tomorrow after Allistaire’s MRI to talk about what’s next because at this point she doesn’t know. She has already begun talking with Dr. Pollard who is now at the Barbara Bush Children’s Hospital in Main and will also be consulting with the transplant doctors. I asked whether or not she could do the trial for transplant without remission that she did before, as I saw that it had reopened. No, no it didn’t work before, so they do not allow you to do the same trial again. And then she adds this, “if she does not get in remission, she will most likely not be offered any transplant.” My heart nearly stops. Remission. Oh what an overwhelmingly hard goal. And now I see. If this DOT1L inhibitor does not work…there may be nothing after that. Nothing. Nothing but making the most of the time that is left. This is where my whole being slams so hard against the wall. How is it possible for me to give up? How can I possibly every come to the point that we have nothing left to offer her? Can you not see this girl? This bright shining fiery flash of a girl?! Tell me how can she be extinguished? How can I possibly stand by and watch that happen. How can I ever bear the sound of silence in my house? How will I walk past that room? What will become of Solveig? How can we love her well enough?
It is so surreal to watch people go about their life when your’s has just been absolutely cut through. You hear people laughing and you see the blood seeping from your side and you feel yourself grow faint.
I feel decimated. I feel flattened and torn. Bewildered. How do we keep going? I mean, I know we will, somehow we will, but how? How do I walk forward without absolutely wasting away, skittering across the ground like a dried out husk. What have the days behind me shown me? “Lift Your Eyes.” I feel so feeble, but this is my life-line. This is my anchor. I ask my God to help me lift my eyes to see Him. Oh Father, give me eyes to see you. Give me ears to hear your voice. Help me to lean on the truth that you are the Ancient of Days. You are the Alpha and the Omega the beginning and the end. You hold all things together by the power of your will. You are the creator God. What is seen with my eyes is not all there is. Let me not be deceived into believing that this is all there is. Am I desperate for their to be something more? There is the part of me that thinks that if this finite life is all there is, if I really just turn to dirt when I die, then let me die now. Let me just be done with this life and this burden. But I know in my core that there is a mystery of such magnificent beauty from which I cannot turn away.
My Father, who art in heaven. Hallowed be thy name. Thy kingdom come. Thy will be done, on earth as it is in heaven. And give me this day, thy daily bread. And forgive me of my trespasses as I forgive those who trespass against me. And lead me not into temptation, but deliver me from evil for thine is the kingdom, the power and the glory forever and ever, Amen.
I choose to look back over the years and seasons I have walked this life alongside my Christ. He has been faithful to me. He has laid in my palms treasures of understanding, more glorious than anything else I have known – in part because they embrace what is dear to me, they illuminate the true nature of what my life consists. I love my children more. I love my husband more. I love the earth more. I love my church more. I love my flesh more. I love the other spirits in my life, my friends, my family, the person at the check out, I love them all more. Knowing God has enabled me to somehow both treasure my life more and more and also to hold it all with an open palm – to see it all as it is connected into Him. This life of mine is not just about this small window of time. This awful cancer that gnaws and destroys, it is but for a time. And scope, scale – these are some of the foundation stones that enable me to walk forward. I am finite and it is natural for me to view my life from a finite perspective, but the eternal God is beckoning me to lift my eyes – to fix my eyes on Christ and to believe Him when He says there is so, so, so much more. He promises to redeem. He promises to resurrect. He promises to wipe away every tear. I come again to that passage of His word, worn with my pondering and hope:
2 Corinthians 4:16-18
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.
Conglomeration of Joy 
Hearing you, Jai. Love you.
Oh Jai, sweet lady…with tears streaming down my face, I read your blog. My heart is breaking…such sad news about your precious girl. Thank you for pouring your heart out to express what’s going on inside of you. The eternal perspective you bring amazes me. It’s beyound what is humanly possible it reminds me that the Lord is with you. He goes before you and behind you. If there is anything or anyway at all that I can support you please let me know. Love you guys!
She’s a gorgeous little angel. I wish I had God’s healing powers for those little one’s like yours. To heal them and make them well. My words come hard but my tears don’t.
No words. Just love and prayers.
Praying for you and your sweet family, friend. For faith, for grace, for strength, for truth.
Oh LORD, we have no power to face this vast army that is attacking us!
We do not know what to do, but our eyes are on You!
(2 Chron 20:12)
Jehovah sees, Jehovah knows…
We pray and plead with you, Jai…for Rest and Worship.
~a NC Sister
Oh, Jai….. oh, Jai…. tears flow here. I will be praying for the Lord to give you supernatural strength to take each step, to breathe each breath today as He promises in 2 Chron 16:9 For the eyes of the Lord range throughout the earth to strengthen those who are fully committed to Him. His name has been praised time and again through your grief. You have given Him such glory in the midst of such agony, and you are so precious to Him. I pray that you will yet again be able to palpate His presence, and that He would comfort you in the midst of this tsunami. Love you, friend.
I can not imagine your family’s agony right now bit Papa God will hold you all and sustain your through all things to come. You are a strong woman of God and I appreciate you sharing your life with us.
You don’t know me, but I pray for you often. I am so sorry, I can’t even begin to imagine the pain. I will continue to lift you all up in prayer and that would will keep your eyes on what is unseen.
My heart breaks for you all. We love you all dearly and continue to pray. I’m so struck right now that my words are simple and lacking, I am thankful I can pray for you to the God who controls all, created all. I can pray to the God who loves you and loves His little girl Alistair. What a privilege that we know Him.
You don’t know me but I am praying for you and your sweet sick daughter and all your family. So hard. So sorry. Cling to the “unseen”, my sister in the faith.
I will still love you when I die are the most precious words ever. Lifting you up in prayer.
I can’t imagine what your family is going through. Prayers coming your way that your precious little girl be helped and healed . she is so beautiful. ❤
Dear Jai,
we never met, I am a friend of your Mom. I have followed all you blogs and my heart and prayers go out to little Allistaire you and your whole family. You are a light in the darkness to all of us.
So very sorry. Praying again for God’s grace upon your family.
Jai….I’m visiting a friend on Bainbridge Is. Sitting here looking across the water at Seattle realizing how close you are and yet how far…my ❤️is breaking with you and for you….wishing I could give you a ((((HUG))))) from GOD & me. Since I can’t and GOD has provided this means of “cyber” LO❤️E I’m sending it with my 🙏️️ers for ALL of you!
i do not know you but i lift your daughter up & pray for healing & remission.
Jai, I’m praying for you, Sten, Allistaire, and Solveig. I don’t understand any of this but I know our God will never leave your side. I’m praying for a miracle, I’m praying for comfort and I’m praying that the love that so many feel for your family will be felt by you all.
You do not know me – but you allow me to see you – to see this struggle – to pray. Thank you. It was last spring as I sat across from Betty Price, my friend, my darling Betty from Masters that I first learned of your blog. My daughter and I had come from Montana for a college view weekend. We live in Great Falls, Betty had wondered if that was near Bozeman -if we knew you. I began to read your blog and to pray. Sometimes I am not sure how to pray. But today I pray that you would see His goodness – that you would feel it, more then you feel the pain. That somehow the loss that could come will not be the loss that you feel today. Always praying for your family Jai.
I am so very sorry to hear this. I have known Lowell for many years and am very close friends with the Waldeisens and I ask about Allistaire all the time!! All of these Children that have to endure this battle are amazing little courageous warriors! I hope that they can find some or trial or anything that can give you guys some hope!! Again so very sorry.
You are an amazing momma, Christian, and writer. I can feel your words. each time I read your post I feel convicted (in a good way) to not take things for granted, to not get caught up in little things that don’t matter, and to never deny God no matter what He is allowing in our lives. You guys are beautiful and I love your spirit. Hang in there momma ❤
What a blessing God has given sweet little Allistaire, for her ordained time here on earth, to have a mother and father solid in Him. Allistaire is a tremendous light to onlookers of God’s love. May God bless you all as only He can. Shalom.
My Dear Friend, when I read this news, my whole being rejects it. I know that feeling of a chasm opening beneath you. The feeling of being swallowed by grief and darkness. I will do the only thing I reasonably can and will be searching for paths forward for you. I know how precious they are to me, how important hope is, how important time is. Please know that you are loved and mine are but two of the many hands holding yours.
we love you…and cry with you…and pray with you. Tammy and Kelly
We love you, cry with you and pray with you. Tammy and Kelly
I find myself unable to do anything but sit and allow my heart to ache with yours. This time, these moments are fleeting. I wish I could gather them up for you.
Oh, Jai, I identify with so many other comments I read here. No words, just tears, love and prayers. Prayers for you, Sten, Allistaire, Solveig and also your extended family. I have many times prayed the prayer mentioned earlier in 2 Chronicles 20:12–“We don’t know what to do, but our eyes are on You.”
Also, because I’ve been working with students this week on understanding the message of the short book of Habakkuk, I am reminded of how God calls us to walk by faith and to just trust Him when everything that’s happening seems confusing, even confusing about God and how He works in us and the world around us.
Love you.
Tears and prayers for you, Jai and Sten. I am so, so sorry that this is the road you have to walk. I’ve been following your story for a while now (I was at TMC when you guys were and did a summer missions trip with Peder and Jess). I will be praying for you in the weeks and months ahead, whatever it brings.
You don’t me but I just wanted you to know that I am praying for you and your precious sweet little girl. Thank you for reminding us all to keep our eyes on Jesus. May you be so overwhelmed with Jesus’ love and peace right now that it is more tangible than the air around you. My heart is grieving with you that your little girl has this terrible sickness called cancer, such a horrible, wretched disease. Although I want to grieve with you I cannot help but hold on to a lingering bit of hope that Jesus can do exceedingly and abundantly beyond all that we can ever ask or imagine. I have prayed for a large cancerous tumor in my uncle that amazingly went away. I know that our God is the Ultimate Healer. So I and I am sure many others, you included will pray with hope until the day God take’s her home, let’s pray this isn’t until she is 100. So Jesus we come before you knowing what the doctors have said, knowing that it seems like this cancer is going to take over this precious little angels body and we ask You, no we BEG YOU, please heal her. Please Lord touch every part of her precious little body and heal it completely. tears. Please Lord hear our prayers. Please Lord take every bit of cancer out of this little girl’s body right now. We know Lord You can do this. Give us faith Lord. We praise You Jesus that You have her life in Your hands. In Jesus’ name. Amen.
Lifting our eyes with you…..lifting you all up with broken, tearful pleas for grace to trust,… to breathe,…. for strength in weakness,…for miracles.
Oh Jai, my heart aches for you! With tears I read this, how can it be? We will continue to uphold Allistaire and your whole family in prayer to the One who can heal, and the One who comforts. Love to you all. Please let us know if we can do anything for you! We are just a ferry ride away.
Praying, praying, praying. My heart aches for you all.
Dear Jai- Thank you for sharing such terrible news illuminated by our eternal hope! I am heartbroken at your news, but still confident in our Father to bring beauty- even from the ashes of this cancer. Big hugs to you all & know our family is praying for yours.
Praying. I see those pictures of that beautiful girl and she has fight left in her! Praying for victory once again over this mountain!
Watching your amazing daughter at Petra brought tears to my eyes and then meeting you at Clod Smoke and now reading this…I will be steadfast on my knees.
Jai and Sten, you are not alone, God is walking alongside you. Don’t forget He is present, He is working, He cares about your grief…the depth of your sorrow I can only begin to imagine. Praying for you and for your sweet family. I am in a season of not knowing what God is doing and there’s lots of loss and grief; about all i know for certain anymore is that Jesus loves me, and that is enough. I am praying that you are comforted by Him too.
Our love & hope is with you.
There are no words, sweet friend. Only love, and prayers, and grace. My heart is with you and I am steadfastly praying for Allistaire. May God wrap you in His strong and loving arms and give you peace. Love you.
Lifting you all up in prayer..My sweet friend Windy has a journey that has included a battle with the viscous ugly Cancer and here is a link to her blog, http://windysjourneytohealth.blogspot.com/ she has chosen the Gershon therapy.. I pray for you and your sweet family..sending a big hug
May God bless you all! My heart hurt as I read your heartfelt words.
Hi Jai. I stumbled upon your blog after seeing some beautiful pictures Pam Omohundro took of Allistaire. We met your family this summer camping at Cliff lake. I am so sorry to hear that Allistaire has relapsed. You have a beautiful family and I am thinking of you. Kim kusak
God be with you.