Blind Sided


IMG_0434IMG_0435Blind sided.  Out of no where.  Everywhere bright sunlight, perfect blue skies, flashing radiant green leaves, bursting life.  Though my mind knew the possibility of what the scans would reveal, optimism actually seemed to fill my view and I am not prone to optimism.  I realized I had seen no change in her eye, nothing to show the march of cancer in her sinuses.  Wednesday morning I knew I would end that day knowing something profound.  And there seemed to be light on the horizon, it seemed within reach, for once a real genuine possibility that we might outrun this beast, at least for a time.  There was one dark blot.  The nurse practitioner on Tuesday had a very challenging time getting her marrow.  She poked Allistaire three times in the right hip, twice in the left and so little, so little came out.  “She bent my needle,” she told me.  As soon as I saw her I anticipated something being wrong; my hot flush validated.  Such a thing had only happened when she’d had disease.  But she couldn’t have disease in her marrow.  In an entire year of low-key chemo, she’d only had low level disease one time.  I never even thought to worry over her marrow.

Dark shadow suddenly overtook sun.  I had not heard the pounding of its horrible feet.  No awareness of its stench.  The speed with which it grabbed Allistaire…in a flash she went from her normal joyful little self, a bright sprite, a light, giddy blue eyes, a vibrancy…her face has already changed, her eyes puffy and the blue small slits full of pain.  She has done little more in the past 48 hours than sleep and call out, whimpering from pain in her arms, her legs, her head.  It hurts her to move, to shift from laying on one side to the other.  If she walks at all it is tentative and slow, pain, pain.  Gasping, gasping, mouth wide in horror, in shock, confusion.  What?  What is going on here?  My understanding fails me.  I could not comprehend the words…”there are two soft tissue masses in the left supraclavicular location…there are new hypermetabolic lymph nodes and lymph node clusters in the porta hepatis, retroperitoneum, and mesentery…there is diffuse increased FDG activity in the axial and proximal appendicular skeleton…the sinuses are clear.”  A snarling tearing, flesh from flesh.  No disease in the sinuses but, disease everywhere…in the short span of a month those cancer cells have been advancing, overtaking.  Oh my God, oh my God.

In the span of a moment, we are careening into black, the suffocating grip.  We had skirted this storm for so long, the black clouds, the sucking winds, an inertia ever threatening to draw us in and while it has always been with us, all these four years and five months, while it has remained in view, somehow, somehow we had evaded.  I called Sten…you and Solveig need to come.  Solveig arrived at 7am and Sten tonight.  We went to SCCA for Allistaire’s regularly scheduled Thursday morning labs.  When we left six hours later, as I cradled Allistaire’s great 20.7 kg of flesh, and was turning to go, I looked at Dawn, our long time nurse, the words caught in horror, “I don’t know if we’ll come back here…”  Oh God.  Oh God.

How could light and hope be extinguished in so short a time?  I began the day knowing there was probably nothing we could do for Allistaire; that there was probably no treatment that could cure her.  But still my heart clung to the hope that there might be something to hold her, to get her further down the road that somehow her life might intersect some new wonder of research, some new therapy that could somehow, somehow stop this ravaging.  I thought my challenge would be taking the girls to Disney Land and not crying the entire time.  But there was Jamie, the fellow.  “Her marrow has 9.5% disease.”  No wonder she’s in pain.  Her bones are filling with cancer.  In the course of time I learned that her chimerism had changed, now only 85% Sten and about 15% Allistaire, about 15% cancer.  How could this be? A week ago I was told her chimerism were 100% donor.  I could have never imagined this speed.  Her labs show rising uric acid and potassium, evidence of tumor lysis, of rapid cell turn over, of the multiplication of millions of the most fearsome of cancer cells; cancer cells that had some how thwarted the assaults of a nuclear blast worth of radiation, of over 25 rounds of chemo, genetically modified T-cells and the mis-matched cells of another.

All of sudden I realized…the good has already passed.  I have most likely already taken her to the park for the last time.  When was that?  When was the last time I followed behind her on her bike on the Burke Gilman?  When was the last time I tickled her until she cried out for me to stop, never wanting me to stop.  When did I last see her face look like her face, hear her unfettered laugh.  I feel myself going down, my own flesh ripped from bone and tendon, sinews tearing.  Agony.  How can this be?  How?  How could I have already lost so much?  But I didn’t even know!!!! I didn’t even know it was happening.  I thought there would be time, time.  And just like that – everything has changed.  Every action has always been in orientation to her survival, to her life going on, to sustaining.  And now it’s all been swept away.  It’s already gone.

I looked at the toilet seat covers.  I noted the handle to the door that I would never have touched with my bare hand.  I thought about her reading book laying on the table at Ron Don.  She’d come so far.  She was doing so well learning to read.  And now it was gone.  When was the last time she sounded out a word, read her short little stories?  She never even got to go back to school after she was discharged from the hospital because of her cold.  I won’t have to figure out how to home school her.  It won’t matter if other children in our town are not vaccinated.  They can no longer but her in harms way.  I won’t have to mourn that she can’t go in the water at Cliff Lake.  She won’t be there.  She won’t be there for my birthday.  She won’t be there for Obliteride.  She said to me this afternoon, she said, “I wish Obliteride was happening right now.  Why sweet girl?  Because there’s no medicine left for me.  And then the doctors would have money to find something for me.”  Aaaaaahhhhhhhhhh!  The flesh of my face contorts and my heart beats hard.  How will I get on my bike?  How will I ride those miles?  How can I not get on my bike?  How can I not ride and ride and ride and ride and never stop, never stop asking for more.  More.  We need more!

Dawn showed me the med list, wanting to know if there were any meds I wanted to stop giving her.  Because suddenly we don’t have the long view any more.  Suddenly everything I have done as a parent to push her, to care for her as a person who will grow into an adult, it all falls flat, out of place.  It no longer makes sense.  I hesitated.  How could I say no to any of those meds?  How can I yield?  How can I yield?  How can I hand her over?  But what does it look like to love her now?  I have for so, so long fought for her, defended her with all my might, been attentive to ever last detail.  How do I just walk away.  How do I just stand with arms at my sides at let it come for her?  We still haven’t met with the doctors to come up with a plan, but as the day progressed it became more and more clear that there is probably nothing to be done but make her comfortable.  I asked Dr. Wolfrey, what do you think?  I know you can’t tell me how long, I know you can’t predict, but you’ve been here a long time, you’ve seen a lot, what do you think?  She agreed that it had taken everyone by surprise, the change had come out of nowhere, there was no hint of its onslaught.  But given the rapid progression, she said probably no more than a month.  Maybe two weeks.  Maybe one.

Incomprehensible.  I literally don’t know how to comprehend.  I feel the immensity of this is more than my flesh knows how to allow in, to take into myself.  Though I have intentionally looked death in the eye over and over, have never turned away from its black looming form, despite holding the cold hands of my friends children, it remains a reality disparate, utterly apart from all I have known of this child who has only ever burst with life.

What I can tell you is that those close to me, dear to me, those whose beloveds have died, they long to be reunited with them.  And those that know Christ – their yearning has a specificity, a particular quality and dimension, a faint outline, their eyes keenly fixed on the shadow of what is promised, they have a yearning unlike anything they had previously known that draws them to the Lord, to call out with groaning for Christ to return, a desperation to leave this life and enter the next.  Mental assent to the concept of death and disease and sin is not enough.  One most know the gnawing of disease, the gaping hole of death, the ugly betrayal of sin in order to loosen the grip on this life, this world.

Ingrid Lyne’s sawed off head and foot were found Saturday afternoon in a recycling bin.  She was savagely murdered by the man she was dating.  She was a nurse at Swedish Hospital.  She was forty years old and the mother of three young girls.

On the same day that Ingrid was found, my friend’s brother-in-law jumped off an overpass in California.  He leaves behind his wife and sons.

A woman in our town suffering from postpartum psychosis, shot her husband in the back of the head, then her sixth month old baby before calling 911 and then shooting herself.

My friends have a box of all that remains of their little girls, ashes.

My sister-in-law grieves Jens’ body broken at the bottom of cliffs.

I have yelled ugly, belittling words at my children, the very children of my womb, the children I love.  I have harmed my husband and not made safe space for him, I have been guilty of immense selfishness and materialism and arrogance and gluttony and coveting.

My six year old little girl likely swept away, never to admire her hilarity again, to see the sweet compassion in her eyes, to rub her back at bed time, blow kisses…

And you ask me how I can groan for another life, for another world, for an altogether different sort of life?  How can I not?  How can I not scream with every raging cell of my body that children should not die, that depression should not destroy, that sin should not ravage?

The brutal unending brokenness of this life, this creation causes my eyes to rise, to lift up, to fix my gaze, my hopes on God.  Apart from hope of another world, another life, despair might likely dominate, or numbness or distraction.  God declares this of the life to come, “Now the dwelling of God is with men, and He will live with them.  They will be His people, and God Himself will be with them and be their God. He will wipe every tear from their eyes.  There will be no more death or mourning or crying or pain for the old older of things has passed away.”  (Revelation 21:3)  This hope enables my to look full into the face of this agony, this dark, impending death, horrific violence, utter despair, and see the promise of more, of different, of other and my longing grows.

The bulk of my hope lies in a world yet unseen, in a reality promised but not yet experienced.  The irony is that this assurance of God fulfilling all His promises, of redeeming all our sorrows, of all the days of my life being of purpose and enveloped in a vast and beautiful plan, of putting away death and sin for eternity, this subsequent loosened grip on this life, it frees me up, it gives me buoyancy to more fully dwell here, now, intently, without having to turn away.  I don’t value this world and this life less because my eyes are fixed on the world to come.  No, I am freed up to relish and delight and claim beauty and good where ever it is to be found in this life and in turn to know that it is just a whisper of what is to come.

It is mystery and paradox but my very love of sunlight, of craggy rock and star scattered night, of cool scent of sage, of birdsong, of cytoplasm and nucleotides and whirling atoms, of ocean and whale and storm and tectonic plate, of magnetic pole and bursting suns and waves of the electromagnetic spectrum – they all call out – they all declare and sing and sing of God and I treasure them all and I am giddy before them and they point endlessly to the might and glory of my God. I don’t love the earth less because of my belief in God – I love it more, more, more for it is all His, it is all the expression of His wonder.  And if this is how I may treasure that which does not have spirit, how much more my fellow beings, crafted of but dust, but made alive by the breath of God?

Time is short and I must go.  My words fall short as I try to grasp for words to put some beginnings of dimension and color to this mystery – this agonizing that comes from the thought that we may really soon lose Allistaire and yet – this brutality is all interwoven, caught up in realities far vaster, hopes that sustain the heart that tastes death.

The day has begun and Allistaire is already calling out in pain, pain in her legs and her first dose of morphine.  I have already emailed Dr. Cooper to ask about another CD33 targeting drug (a sort of next generation Mylotarg drug) in clinical trial for adults – could it be an option for Allistaire?  Could we get it on a compassionate use basis?  And you know what – that drug – it comes from a sea hare, from the symbiotic relationship it has with the algae it eats, from some molecule that is formed in its gut.  So you see, even in the midst of the most brutal ravaging, there He is, there is God not waiting to give us life only in the life to come, but in the most wondrous of ways, declaring, I am here!  Look how I love you!  Look how I have gone before you and provided for you.  Look how I have compassion on your suffering.  Look low here and now and behold that I am God – be in awe – see what I have made and if you think this is good, well just wait and see, this is only a tiny smattering of the glory to come.  Come Lord come!!!!!

We meet with Dr. Cooper and Dr. Bleakley at 11am today.


58 responses »

  1. Your blog is so beautifully written I’m in tears. I am in awe of you faith in this challenging time for your family. I lost my 4 year old to neuroblastoma in May 2014, so unfortunately I know how difficult this time is for you. I will be praying for Allistaire and your family.

  2. There truly are no words I feel I can share but to thank you for sharing yours with us. At this moment as a mother and grandmother I can only begin to feel your pain. But I am very pleased that you have our God the Father to carry you through this season and to share it with those who can lift Allistaire in prayer. God bless you sister in Christ.

  3. Praying that you all have the strength to get through what lies ahead. Mike and I will continue to pray for all of you.

  4. There are no words to describe our sorrow. Just know that you all have always been on our minds everyday even though we are so far apart. We love you all! Continued prayers!!!!

  5. Prayers for God’s almighty hand to unfold His perfect and incomprehensible plan for Allistaire whether it is getting lined up with a clinical trial or not. God give you peace!

  6. This verse has brought us comfort in the loss of my brother. I hope it does for you too.
    Isiah 57:1-2 “The righteous perish, and no one takes it to heart; the devout are taken away, and no one understands that the righteous are taken away to be spared from evil. Those who walk uprightly enter into peace; they find rest as they lie in death.”

  7. You have never left my thoughts. In the middle of it all you still point to Chirst and He is exalted on high. Praying for supernatural peace to transcend this situation. Give us more, more, more than we could ever asked for or imagined, oh Lord. Dear sister, we are fervently crying out for you.

  8. I am sitting here crying as I pray for comfort for Allistaire as she faces fear, anger, pain, and confusion, for You as you walk this with her, with your own pain, anger, confusion and fears, for Solveig as she faces this with her confusion, fear, anger that she may somehow find comfort, I pray for Sten That God gives him the strength to wrap his arms around you all and just feel the love of his family, to be able to have men of God stand with him as he faces his fear, anger, confusion and that he too be able to find some sort of comfort. The loss of a child I do know, yet I do not know if I could have walked a few steps in the steps you have walked. My prayers seem so little, I wish there was more I could do. Jai Please know you are loved and Prayed for by many. Your faith amazes me, no matter what you take it back to Jesus. You are much stronger than you will ever know. Love and Hugs my friend.

  9. What can I say. Words fail.
    Just tears and prayers…

    “I would have lost heart, unless I had believed
    That I would see the goodness of the Lord
    In the land of the living.”

    Psalm 27:13

  10. Oh Lord, do a mighty work. For your glory, we pray for Allistaire. God, would you give her comfort through this time of fear and uncertainty. Would you give peace that surpasses our understanding, and guard hearts and minds in Christ Jesus? We praise you Lord, for your faithfulness to man. I pray that you would hear our cries Lord.

    Psalm 67
    May God be gracious to us and bless us
    and make his face to shine upon us, Selah
    2 that your way may be known on earth,
    your saving power among all nations.
    3 Let the peoples praise you, O God;
    let all the peoples praise you!
    4 Let the nations be glad and sing for joy,
    for you judge the peoples with equity
    and guide the nations upon earth. Selah
    5 Let the peoples praise you, O God;
    let all the peoples praise you!
    6 The earth has yielded its increase;
    God, our God, shall bless us.
    7 God shall bless us;
    let all the ends of the earth fear him!

  11. I’m sorry is wholly inadequate to express all the sadness I feel reading about Allistaire. My 6 year old, Rhys, met her last fall at the hospital school and it’s hard to accept that someone with so much lively sparkle in her eyes could be declining this way. Our prayers are with you.

  12. Praying for Alistair and your entire family. May you feel God’s presence in every situation and him carrying you through each challenging day. You are am amazing mom!!

  13. May God be your journey these days ahead – so so far from you, we haven’t even ever met you…but you have become central in our prayers, thoughts, and tears – we pray that you can persevere and see each day even one small boundless gift. Allistaire is truly a child of God…she has taught us so much. Love from Montana —

  14. Been praying for your family now for several years. A mutual friend shared your story with me. I pray that you feel His presence so close, wrapping around you and for faith to increase. I pray for strength. Praying for pain for control for Allistaire. Praying for you and Sten to be bound together and not pulled apart. Praying for Solvieg every need to be met by Him. Praying.

  15. Crying, no bawling, feeling for you, for your baby! My heart is so heavy and breaking for you guys. I have been following your blogs for a while now and I have become emotionally involved in your story. I know there are no words of comfort to give but I cry out to God for peace and mercy for you guys. I am praying for His ever faithfulness to carry His children through this horrific storm! Come Lord Jesus come, this life really is full of pain, yes full of hope in Jesus, but pain too, until He comes for us!

  16. This cannot happen. There has to be something else. Allistaire was our hope. You are my inspiration. Every time I get down about Lucy and the terrible fight I think of you and Allistaire. You are never far from my thoughts. I will pray for her and I will ask my mom to light a candle at church tomorrow night. We are all here for you. We will be sending strength and love daily. God bless all of you

  17. How my heart aches with sadness as you share this time..Thank you for sharing. So many of us are spoken to by God’s voice , to look up ,to lift up prayers, to do the things He has planned before time for us to do, as we read your beautiful , terrible postings.. May God’s perfect comfort and wholeness be Allistaire’s and may your Joy be complete in these days… Hugs, Audrey Royer, a friend of Lucy’s down in Myrtle Point…

  18. What can I say? My heart breaks for you, but is blessed by your hope in the Lord. My mother died from the same kind of cancer, so my heart is with you. I can only understand a little glimmer of how it must be to watch your baby go through this.

  19. Oh Jai! Our whole family weeps with you. Our Anna diligently keeps updated on your precious girl and is the one who shared the news with me today. You are a strong woman, God gives you that strength and He will continue. He will also comfort in a way no other can. Please know we are here, praying, crying out to God on your behalf.

  20. You have every right to be angry and most of all want a better world because this one is so ravaged by violence, disease, sadness and suffering. I was raised Catholic but I can’t say it particularly helped me. I dabbled from Christian churches here and there for most of my life and it was only when I started studying with my husband’s family (Jehovah Witnesses) that it started making sense. I now have hope that non of this is permanent and that God will eradicate all this horror from the planet. Best of all we will see our loved ones happy, healthy and alive again. I believe in the Resurrection. I believe innocents like your daughter will never have to suffer again. I wish you peace and light….as a mom I send you love. I will pray for her health.

  21. So sorry to hear this news. I have been praying for your little sweet girl so long, will continue for you all.

  22. I am so sorry to hear this news and pray for you and your family’s strength and for healing and no pain for sweet Allistaire.

    • Today erin and I read your post and we thought of Alistaire as we floated in the ocean. In the waves. We do not know you or her, and do not pretend to. And we know there is no consolation prize for a brutal battle well fought. But we also know based on our brief glimpses into your lives that your sweet daughter and you and your family have done remarkable things and will continue to do so. Your persistence and values have inspired thought and more importantly action of what seems like an army to us, and we hope that as grief subsides, you can and will reflect on the fact that many people live long lives never realizing that potential.

      We send our love at this difficult time and wish you all the best.


  23. Oh no I am so sad to read this. Know my thoughts and prayers are with all of you. Pleas hug that sweet precious little one for me. I will be praying for all of you!

  24. A couple of weeks ago, I saw you and your daughter at the pharmacy at Children’s. I was waiting for my daughter’s meds after an intense 24 hours, and your daughter made me laugh as she insisted on putting on her lip gloss. It felt so good to laugh, despite my deep exhaustion and worry.

    It turns out we have a mutual friend, and she shared this post tonight. I’m saddened to read your update, and will keep all of you in my thoughts.

  25. Dear Jai,
    I love you friend and sister. You wrapped your arms around me with grace and I tonight wrap myself in grief and deep ache. The words are bitter and the pain ingrained, praying for your family.

  26. The only thing that we could do is pray. Not all is lost, God can still breathe life into Allistaire. Praying for a miraculous healing that the medical world would be amazed at the healing in God’s hand.

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