Tag Archives: Obliteride

Facets of Broken

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I sat in the chair across the small room from this young man I have begun to know, a man who lives much of life in retreat, in self-shelter, and who was speaking of his immense fear.  As I have been granted entrance, each footstep is placed with care as I walk into the space of sacred ground, of places tender and vulnerable.  Here, where I have been allowed in to catch a glimpse behind the veil of one beating heart, of one life…flashes of beauty, wells of dark, flutters of fear, and wounds.  Wounds upon wounds.  Wounds echoing in life after life.  Wounds of loss, of abandonment, of rejection, of being cast off, of not being counted worth it.

We talk of fears, of “what ifs?”  What if you went another way?  What if you looked down at those two rutted out tracks you’ve traveled a hundred thousand times and decided this time, this time you will go another way?  Inertia would be of essence, that force to get up and out and travel a new path.  What if there were a way to see your fear before you, to look it in the eye, to walk forward and through?  What if this time you didn’t try to run away, to deflect, to distract, to drug the senses so you just don’t have to feel?

“So conquer my fear?” he ventures.  He describes a decimation, an assault, a radical diminishing of power of that fear, a destruction, an attempt to remove, crush and do away with the fear.  This word conquer doesn’t feel quite right, for what do we do with fears that are as real as anything we know? Not fears simply imagined, or fears exaggerated and inflated, but fears real and concrete?  What if that fear should be full of power and might and tower before you?  There are whole spectrums and realms of fears, but what of those fears that in their terror actually reflect things of immense value?  We wrestle with our thoughts, with our words, turning them over this way and that, trying to get a gauge on them, trying to make out our approach to these unwieldy monoliths.

I have a handful of fears.  No, no really far, far more, but of the whole bunch there are some whose dark shadows cast the most terror.  Fears whose fruition can never be undone, whose aftershocks quake endlessly underfoot.  Despite all my might, the entirety of my intellect, all the great force of my will, despite the swell of my fierce love, I have known the fulfillment of two of my greatest fears.  There seems to be no motion in the thousands of moments in each of my days, that I do not feel the barbs dragging sharp across the tender raw flesh of my heart.  There is no getting away from these vast sorrows who penetrate and saturate nearly every action, every thought, every time of day, every place and interaction.  Sometimes I am engulfed, find myself swamped, going down, going under, the flailing and fight to stay with my mouth straining for air above the waves.  And sometimes the quiet longing of no more, just be done, just gone.

When the last wave of devastation finally came for Job, he sat in silence with his friends for seven long days, unable to speak, no words remotely sufficient to even begin to form some perimeter to define the loss, to take stock of what was left.  Just silence, just mouth gaping, just horrified awe and a terrible lack.  Over a year has passed and still my jaw lies slack.  Little fits of words, a cluster of sentences here and there. How to begin?  Where?  The questions too numerous, too vast, so daunting.  The ravaging of the storm so great that seemingly little remains, even the scaffolding torn, ripped up from its footings.  Questions as big as the vast blue Montana sky, no equation to measure the diameter, much less the means to traverse.

But there was a prologue to the woes that would come, nearly a year of stirrings, of invisible and radical rearrangement.  Months of wrestling that would eventually flow into these day: On Labor Day weekend of 2011, after a long evening at a friend’s house, like some broiling infection desperate for the lancing, my husband finally let loose with the reality that he was no longer a Christian, no longer a believer in God.  I found myself going down, down into the vast darkness of a crevasse of the unknown, of uncertainty, of radical sorrow, of assailing questions.  We were only days away from going to Hawaii in celebration of our 10 year anniversary.  I had no idea how to celebrate, no idea how to orient myself to this fundamental shift of trajectory, one that had been shared, been a binding between us, now severed.  The next wave brought buoyant hope that we would at long last be able to move to Montana with the offer of a great job in Bozeman.  And that wave came crashing down, slamming our limbs into the rocks the very next morning on December 1st, 2011, when the word “leukemia,” was first uttered in conjunction with our little beloved Allistaire, then only 21 months old.

But before all this, in that year that preceded, I think the Lord began to make evident His answer to my prayer, prayed in times past.  After what felt like years of stagnation, I told the Lord one New Year’s Eve, “I want to grow.  I want to be like those plants whose leaves are dark and sturdy with age but who also have those tender, delicate, bright green leaves of new growth.”  I could never have imagined what growth would look like, what growth would require, what radical pruning would be necessary.  I had no idea that what growth I really needed went down to the root.

The wrestling of that near year is summed up by my rage and fury that I was finite, that I could not seem to change myself nor my circumstances and that God wasn’t fulfilling what I thought was His end of this being a Christian bargain.  The deal goes something like this: I’m jacked up so You/God will fix me, make me all better and pretty and nice and I go on my way, and while you’re at it, cause You’re all-powerful and all, make my life look like I want it, what I deem as “good.” I sort of got that I was finite and that I needed God since He’s a whole lot bigger and stuff, but the part I didn’t get, the part where God absolutely cut me at my knees and knocked me to the ground was this: that my need for God was of far vaster proportions than I could have ever guessed nor ever wanted to accept and God gets to decide, God gets to determine what is good and I don’t get to boss Him around to do my bidding.  He is God and on one spring day in 2011, I fell to my face in radical submission to Him, to His will and to His declaration of what is good and what my life should look like.  And by the way, I had thought I was okay with needing God, but what I discovered was that I was not at all okay being utterly dependent on Him; that thought was revolting to my finite, western American, 21st Century mind.  But flat on my face before God, I think I had my first real glimpse of His utter “otherness,” His holiness, His Godhood.  It was my first real taste of the “fear of The Lord.”

I had no idea what was coming, nor how much would be stripped away from me.  But in God’s gentle and profound grace to me, He had already brought about a radical transformation in my heart in which I had begun to find delight, goodness and life in the yielding to Him, in the saying “Yes, You are God and You get to choose.” As I look back over the long treacherous road stretching out behind me, I can see how over and over, He went before me.  He cashed provision for me around the bend, long before I could see the “how” of His care.

I stood on the shore of that California beach with Matt, tall and lanky, giving me instructions on how to make my way into the ocean.  “You swim through the waves,” he told me.  Determined I strode forward and attempted to re-enact in my body the words he had offered.  Before I knew it, I had been slammed down with the force of the wave, body twisting in the churning water, a sense of desperation to get my footing, a gasp of air and another wave knocking me back down.  Wave after wave hit, never enough time or sense of direction to get myself upright before the next one came.  Eventually I sat exhausted, spent, shaking in the sand.

It has been five and a half years, wave after relentless wave crashing down, scouring grit and sand against my skin, being beaten against the rocks, ceaseless gasping for air, the sensation of going down, being sucked under now common place.  Disorientation, baffled, bewilderment, mouth gaping, eyes wide with terror, utter exhaustion, and tears burning, salt stinging in ragged cuts, abrasions.  Wounds upon wounds.  I am still here, though sometimes I’d desperately like not to be.

At multiple points in these years, Sten declared his un-love to me, his not-love, his I no longer love you.  I have felt so desperately alone, fear thick, heavy, both hot and cold tightening around my throat.  That deeply rutted road of my mind and heart, neural pathways laid down thick ensuring speed, ensuring unwavering direction, the pulsing cells of my heart contracting in unison, a relentless chanting of FIGHT!  The structure of my brain stem oriented utterly toward not flight, not freeze but Fight!  With every fiber of my being, every exertion of my intellect, every coursing hot throb of love, with all my great might I could gather and bring to bear, I fought for Allistaire.  I held nothing back and I set everything aside with one singular aim, one white-hot center point of target, I fought for her life.

And it was not enough.

I could not determine the outcome.

It was out of my hands…out of my finite grasp.

And I have struggled and gasped and gagged trying to sit “God is good,” next to “my child is dead.”

Her foot hit the door of her bedroom as Sten carried her stiff body out of the house that dark April night, and they zipped her into the bag with the fancy fabric, and the van drove out of sight down our driveway, Solveig wailing into the darkness, I knew.  I knew it was “game on.”  One fight had come utterly to its end after so very long, after so many twists and turns, highs and lows, there was nothing left to fight for.  And rushing into that vacuum, that space left behind as she left our lives, came crushing the fight for my husband, for my marriage, for another cornerstone of my life, my identity, my place in the world.  In all those long years, “we” had to take second with the vast majority of our attention fixated on caring for Allistaire.

But it was not enough.

I could not determine the outcome.

His heart had already departed from me.

On September 5th, 2016, Sten made known there was no more “us.”  After fifteen years of marriage, his pursuit of his own happiness meant for him walking out of the threshold, of severing the hundreds of thousands of cells that had grown between us.  On May 22, 2017, our divorce was final and with his permission I took his face in my hands one last time, and with a kiss on his forehead I declared to him the great intention and longing of my heart, “I leave you with a blessing and not a curse.”

He once slammed into a tree while snowboarding.  There was forever a dent there, and indentation where the cells never grew back and filled in.  I used to like to put my hand there, to cup that place of lack, the tree unseeable but its impact never to be undone, forever seen.  There are great caverns, places hollowed out in me where once dwelt he and Allistaire, beings so precious and dear to me, flesh of my flesh.  Gone.  You look at me and you cannot see them, but their absence will never by undone, gouged out for all my days.

I remember days in the hospital with Allistaire, nights I would go to sleep crying, waking with the morning and still crying, lying there in the couch that turns into a bed, terrified to set my foot to the floor, terrified to begin the day, so well acquainted with the reality that the entire earth could tilt on its axis before day’s end.  There has been no let up, no ceasing from the striving, no option to stop, just a constant harried insistent demand that I put one foot in front of the other, a willing to move through each day.  Relief when night comes and I no longer have to live through that day.

I no longer walk through a mine field, never knowing what step might be one more reason for Sten to walk away.  I no longer walk with the high-pitched sizzle of terror saturating my blood, the fear of test results, of lab results, of flow cytometry, and PET scans, ASTs and ALTs declaring the state of the liver, of creatinin in kidneys and the ejection fraction and shortening fraction of the heart, of the sound of fluid in the lungs or the poisoning of ovaries and scraping away of IQ from radiation like Hiroshima.  My iPhone no longer auto corrects “and” to “ANC.”  Most people with whom I interact daily have never met Allistaire or Sten.  Those radical indentations, those places of lack, lie barely concealed behind my every day tasks.

Now my days are filled with 30 hours a week at Thrive as the Parent Educator and 16 hours a week as an Integrated Behavioral Health Therapist Intern at Community Health Partners, as I attempt to amass the 3,000 supervised hours required to obtain my Clinical Social Work License.  In the evenings I go home to an empty house, the cookbooks lie untouched on the shelf and there is no sound but that of the wind and birds outside.  I lost one child and have had half of the other taken away.  I live in a house and drive a car intended for four. I have been whittled down to one and a half.  For fifteen years I lived and moved in the realm of couples and families and now, now I don’t know what I am.  I have been radically ejected from the reality of families.  Nebulous, ambiguous, extraneous, that left over part of a fraction.  I am disoriented, bewildered, baffled, radically exhausted, saturated with sorrow, deeply bruised, bloodied, cheeks tear streaked.  I have become so radically sober.  I don’t know who has been left behind after all this tattering, this relentless erosion of my being.  Everything has been impacted.  The tsunami washes away in every direction, present, future, past, nothing left untouched, nothing left unchanged, everything tilted and swung off its axis.  I look back and wonder in confusion, “when did it all begin?”  I crane my neck to see all the way back, all the way to those first days and months and years with him, all the way back to my womb where cell was joining to cell and perhaps even further back than that, something went radically wrong.

If you look at me now you might be mislead to think I have not moved much.  The tenets of my faith look mostly unchanged.  I sit on that spectrum of ideology and philosophy and spirituality in just about the same spot.  What you see before you may not allow your eyes to perceive the vast distances my heart has traveled, the tender places worn down from ceaseless wrestling, the radical rearrangement of the scaffolding of my being, the sights I cannot unseen, the weeping that seems to have no end.

One thing I know amongst all the overwhelming unknown – I turn my face to God, to Jesus my Christ.

For facing my fears I have.  I have sat across another table from Sten, this time signing legal documents that end my union with him.  I have sat at a table and signed a document to have the flesh of my beloved child incinerated, reduced to ashes, now housed in a bag.  But this is not the end of facing them.  Like the mountains of my youth, those Cascades that appear to be a long line on the horizon, they extend outward behind that illusionary silhouette, how far I do not know.  There are mountains beyond mountains, endless dark valleys and valleys bright, mountains jagged and threatening calamity and mountains upon whose tops I might just see the whole wide world.  They go on and on into the distance.  I feel the darkness closing my vision, the sounds growing faint and my strength slipping away as I stand too fast to take in the view.  There is a thrill in the sensation, the wondering if I might actually finally just be done, no longer required to keep moving along this rugged path.

But the darkness subsides and sound returns and I find I can stand.  There are mornings I want to despise another wakening, another day before me.  But the Lord continues to add day to day to day and to cause my lungs to expand once again, my heart to beat on.  Part of the struggle to move forward is the not knowing where to go, much less how to get there.  There is no landmark before me.  I have passed by those columns, the markers of an adult life of school and marriage and children.  I know only that I must work to provide for my life and I will continue to be a mother as long Solveig or I dwell in this land of the living.

This past week has brought light to another place of darkness, to another great fear now realized.  I see now that I am ensnared, caught in a tangle.  I see that I am not just the mother who has lost her child, nor the woman whose husband has cast her off, but there is blood on my hands.  Somehow in the swell of my sorrow, the tears that constantly fill my eyes and blur my vision, the deafening wail of my own hurting heart, I had not really seen how much I too have been perpetrator, doer of harm.  Oh I have always been well aware that I am not perfect, that I sin and fail along with everyone else, but this week in conversation with a number of people, I have had to face that I have also thrown the dagger, my whirling fury and fear has inflicted harm and brought pain to others.  I too am to blame.

On Tuesday night and on Wednesday night and on Thursday night I wailed out into the dark night sky with sorrow and horror that I have brought harm I cannot undo.  I have no ability to go back, flying over the surface of all those long gone days, scanning for the moment when the devastation began, to know the place to go back to and intercede, to rewind and redo.  The universe does not work this way, there is no reversal of what has occurred and I gag and my heart roams, rushing to and fro, aghast and uncertain, what now to do with all this ravaging, ravaging added to ravaging, loss to loss, wound to wound.  We are all a bloodied mess.

I don’t know what to do or how to proceed.  I want there to be some “clean-up” protocol for this toxic spill.  The way forward is uncertain, but the Lord has made at least a few steps clear, coalescing out of the muddied fog.  I must take stock. Like the explore Clark, like Lewis, I need to travel through this land and make note of what is here, to walk down into those frightening valleys, to walk the plains and scrabble up the mountains to see the view from there, I must look at the landscape of my heart, of my life, of my interactions with those with whom I dwell.  And then I will begin to know the contours of the harm I have inflicted, I will start to see how one connects to another, how self pain intertwines with the pain of others and loops back again to intersect and bring about more pain.

I don’t know the way forward but I know that owning the harm I have done and asking forgiveness from both the people I’ve harmed and from God, is the place to begin.  Inviting the eyes and ears of others to help me see and to hear where I have been blind and deaf is a place to begin.  Asking wise guides to tenderly and courageously lead me to help make sense of it all is essential.  I don’t know where this road leads, but I never really have anyway.  It is terrifying to face the real fact that I have lost Sten and my marriage and my life in significant ways because of my own failings and my own sin.  He and I, we both have blood on our hands.  And I cannot undo it.  I can only ask the Lord of the Universe for forgiveness for the ways I hurt Sten and failed him and seek His provision and guidance for the road before me.  I must ask Solveig my child, and Solveig the woman, to forgive me for the way my sin undid what should have been hers, a home with two parents committed to loving one another.  I have to ask my parents and my in-laws and my brother and my brother-in-laws and my sister-in-laws for forgiveness for the part I have had in all this ravaging and its far reaching impacts on our family.  I have to ask forgiveness of the on-lookers who just shake their heads as they pass by this messy tragedy.

So much of the time it all just feels like too much.  Too much.  And I should like to just slip away, to cease existing, to vanish.  After Sten told me he no longer wanted to be married to me, I could hardly eat for two weeks.  I whispered to myself, I don’t want to exist.  I far prefer to no longer be.  I wanted desperately to waste away.  I sit across from the man who mourns his life and despairs his existence and I know that woe, that radical inability to go back, the incapacity to change what is true, the appeal of no longer having to endure the turmoil.  Can I not just lay this burden down and never ever have to raise it up again?

This is what my dear brother Patrick wrote to me as I expressed my undoing grief:  “I know this may sound like a platitude, but I sincerely believe this: no matter how bleak life may seem, no matter how broken your mind, heart and spirit may be – life and love and joy will creep back in.  All is entropy, yet life continues to find a way.”

And I believe this is truth.  All around me the creation exclaims it, in the voice of the rustling, flitting aspen leaves, in the deep thunder in those steel gray clouds, in the incessant vibrato of the crickets, in the water that makes way through rock, in the unweighable girth of the snow flake who one by one by one amass to form the glacier that gouges out the mountain wall, in the rush of the wind through the fir boughs.  There is a force that overcomes another.  “You know that moment?  That moment when the plane is rushing down the runway, and the whole frame of metal riveted to metal shudders at the attempt, and then there is that glorious, mysterious, terrifying moment when the force of gravity is finally overtaken, overcome by the law of thermodynamics?”  You get lift, you rise.  I doesn’t seem like it should be possible.  It is illogical that a great mass of metal should dwell far above where your neck cranes to see.  And yet it is, it is.  One force overcomes another.

Yes sin and death are powerful foes, seemingly unstoppable, absolute and concrete, permanent.  Yet there is another force at work.  There is a power that overcomes their power.  There is a life that overcomes their death.  My hope is in Christ.  I’m banking everything on Jesus.  I open my eyes to another day rather than finding a way to extinguish my existence because I have hope.  I am looking for the redemption and resurrection that has already been secured in Jesus.  Yes, I have sinned deeply and vastly and there are real and brutal consequences that I have to live with as do many others who have been impacted by my harm.  I have to live with those gouged out places in my being where once dwelt a man I loved named Sten Karl and a little bright love named Allistaire Kieron.  I can never get them back in this life.  I have to live with these scars.  But my hope is in Christ Jesus, who for the joy set before Him endured the cross, scorning its shame, and sat down at the right hand of the throne of God.  I fix my eyes on Him.  I lift my eyes.  I take in the full view.  My sins are forgiven in Christ.  He can redeem all this brokenness.  This is His promise to me, to all who believe in Him.  I will see Allistaire again.  Death will not have the last word.  There is a river that flows from the temple of God, from the altar where Jesus laid down his life as the perfect lamb.  This river brings healing and life and one day I will sit in the shade of trees along that river and I will know bounty beyond my imagining.

How to get there?  Where to go?  What is the path?  Jesus said it so simply and clearly and profoundly.  Jesus answers, “I am the way and the truth and the life.  No one comes to the Father except through me.”  Jesus is my way, He is my truth, He is my life.

– – – – – – – – – – – – – – – –

The honest truth is I have finally made myself face this blog and attempt to put some words to all this immenseness because I still need your support and I am utterly aware of how wretchedly tacky this is, but the earth has once again swung around its orbit to summer, to August, to Obliteride in less than a month.  For the fifth time, yet again in weariness, with tears, I will ride my bike.  I will try to push through 5o miles to raise money for cancer research at Fred Hutchinson Cancer Research Center in Seattle where so much of Allistaire’s treatment options came.  Whatever difficulty this is for me only binds me closer to Allistaire who endured so much as a little girl and who ultimately had her life ravaged and extinguished by the relentless onslaught of cancer.

So many of you have already given so much, and I haven’t even thanked you in the entirety of this past year for how generously you gave in her honor, not only last year in the wake of her death, but each year.  I ask your forgiveness for my lack of articulated thanks and I ask your grace to trust that there is much I have simply been unable to do this past year.  I am often quoted the statistic that 70-something percent of marriages end when a child dies, and while I refuse to give credit for all this devastation of my marriage to our girl’s death, it is indeed true that cancer not only took my Allistaire, but it also extracted a great price in my marriage with what amounted to years of separation and more stress and strain than I can rightly begin to describe.  The ravages of cancer are still cutting into my life, as it is for so many far and wide.  If you are willing, I ask that you would consider supporting me again this year in Obliteride, to support an accelerated pace of cancer research that will yield better and hopefully, curative, treatment options for both children and adults with cancer.

If you would like to donate in support of cancer research, please click HERE to be linked to my Obliteride page.

I feel compelled to make one last point.  The single biggest reason I have not found the ability to write this past year is that I have not known how to be real and honest and do so in a way that gives as little attention to Sten as possible.  I love him and I will never turn away my heart from him.  I sincerely want good for him and I kept quiet for so many years in an attempt to protect him from criticism, to give him as much space and time as possible to sort through his own difficult wrestlings.  I have no desire to bring harm to him in my heart or with my words and simultaneously I am trying to find a way forward to be real about my own heart and to voice my own story.  Please know that I will not allow any comments that cut him down; they will be blocked or removed as quickly as possible.  I cry out to God all the time to remind Him that I do not deserve Him any more than Sten does.  On June 16, 2001, I made a covenant before men and God to always love Sten, until death do us part.  I have no allusions about any future relationship with him, but I intend to keep my covenant of unconditional love, with the great aid of the Holy Spirit.

 

Bouey

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IMG_0903The four of us are bound together in the water.  Allistaire is linked to me and I to Sten, Sten to Solveig.  We’re out there, floating along, living life.  Then something dark comes and latches onto Allistaire and starts pulling her down.  I’m flailing, trying to pull her up, my own face and mouth gulping water, waves lashing.  Sometimes that thing is so small, we barely notice it.  Most often we manage it.  Regardless, it’s always there, always threatening, looming.  Though the times where the black thing swells and we are all being pulled down into the water is familiar, the terror is always sharp and stinging.  Panic.  Gasping for breath.  But we’ve fought it so long…it is the fifth member of our life.

And then…with no seeming warning, that black presence swells with exponential density…Allistaire is snatched off the line.  We wail, we scream, but there’s nothing we can do.  We watch her being pulled under, down, down, down into the deep dark of water.  She disappears from our sight.

We bouey up.

Our striving ceases.  All of sudden there is quiet.  No longer need for exertion.  There is finally a release of the tension, the ever-ringing backdrop gone.  There is no longer a tug, a constant pull on the line.

But now we are three and this relief has come at the cost of our sweet girl, our beloved Allistaire.

It suddenly occurred to me the other day that I have taken the last picture of Allistaire.  There are no more pictures to be taken.  No new stories to tell.

On Saturday, June 11th, 2016, we will be having two separate services.  In the morning around 10:30/11:00am, there will be the opportunity to worship God, to fix our eyes on Jesus Christ who calls those that follow Him out onto the water, who asks us to lay down our lives and entrust our whole selves to Him, the One True God, the Holy God, the God who is other and infinite.  In the evening, we will focus our time on remembering our beloved Allistaire Kieron Anderson and the incredible community of folk that have been such an amazing support along this difficult road.  All are invited to come to either or both services, but please understand they are for very distinct purposes. There will be more details to come.

**Seattle folks – I’m sorry to say, that while I really wanted to be able to hold some sort of memorial out there, I just don’t think I can make it happen.  I’m bone tired and so we invite you to come to the Big Sky State – the homeland Allistaire so loved.

***If you would like to offer housing to folks coming in from out-of-town for the memorial OR if you are interested in staying with a local family, please contact my sister-in-law Jessica at either “pederandjess@gmail.com” or (406) 850-3996.

Lastly, a 3 minute Obliteride promo video featuring Allistaire was just released today.  Allistaire and I both have invested a great deal of time and heart into allowing her story to be told in order that people would be compelled to join the effort to accelerate cancer research and find cures faster – so moms won’t have to tell their little girls that they are going to die because there is no more medicine to fight their sickness.

Please, it would be bring me joy, if you would take a moment and see our sweet girl’s smiling face and goofy laugh in this OBLITERIDE VIDEO.

Thank you to all who have so generously given to support me in Obliteride and fund cancer research.  For those who have yet to do so but would like to, you can donate in my name in honor of Allistaire and/or those you love who are battling or have battled cancer, HERE.  Please know that 100% of funds donated go directly to cancer research at Fred Hutchinson Cancer Research Center (of which our local Bozeman Cancer Center is connected via Seattle Cancer Care Alliance – a collaboration between Fred Hutch, the University of Washington, and Seattle Children’s Hospital).

 

 

Still

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IMG_0832IMG_0899I cannot count the hours I have laid next to Allistaire with this quiet music playing.  Putting her to bed for a nap, closing the curtain to her hospital room and posting the sign telling the world to stay away, Allistaire is sleeping.  Laying next to her in Ron Don, going through our night-time rituals.

The music plays on but she is gone.  Gone.  The bed is empty.

After four and a half years of fighting her great foe, Acute Myeloid Leukemia…after two long grueling weeks since Sten and I made the brutal decision to no longer attempt to thwart her disease, an aggressive, relentless, mindless onslaught…after over three hours, as her body continued to fight, to grasp for life, lungs pulling for air, and a heart, oh her heart, far stronger than we could have ever imagined, that heart so determined, so fierce, it pumped on and on and still her mouth gulped for air when her chest no longer rose and there was not one flex of her heart muscle left…

And then stillness.  Only the soft rushing sound of the oxygen still trying to sustain life.

Quiet

Utter stillness

How very strange to come to the end.  To have this child between us, this longed for child that together we had conceived, this little bright vibrancy now extinguished, pale, still.

We love you little sweets, beyond words and time, you are so very dear to us.

Allistaire Kieron Anderson died early this morning at 1:33am, April 30th 2016

 

My deep and fervent desire has been that these most vicious versions of Allistaire’s cancer cells would be able to be studied and contribute to the understanding of AML, in honor of all that Allistaire went through and in blessing to those who will be forced to come behind her.  Dr. Soheil Meshinchi, one of our spectacular, brilliant and tender-hearted Bone Marrow Transplant doctors at Fred Hutch, made a way for this final offering.  Soheil is the COG (Children’s Oncology Group) AML Biology chair and oversees the largest pediatric AML tissue bank in the nation.  Along with other doctors/researchers dear to our hearts (Dr. Katherine Tarlock, Dr. Marie Bleakley, Dr. Phil Greenberg, Dr. Todd Cooper), he is tireless in his pursuit of understanding AML and finding ways to thwart its stranglehold on so many sweet children.

These are the words of Dr. Soheil Meshinchi to me:

“I will do everything I can to learn all we can about Allistaire’s leukemia.  Her diagnostic sample is being sequenced now and we will sequence specimens that you send us…Please feel free to call me anytime you want to talk.”

“My prayers are with Allistaire and your family.  We will care for these precious cells of Allistaire.  Please call me if there is anything I can do.”

And this comes from him this very morning, “Dear Jai, I wanted to give you an update on Allistaire’s cells.  We received them in great condition.  They were processed and a fraction was used for extracting RNA and DNA.  We purified leukemic cells from another subset and banked several vials.  We are waiting for the result of the foundation medicine testing with plans to sequence her recent cells as well.  I’m available to talk anytime you need to.  Best, Soheil.”

Allistaire’s life was strangled out by cancer and while I look in hope for her to have a new body, one incorruptible, I also strive after life here and now.

Please considering honoring Allistaire’s life and tremendous fight by supporting cancer research at Fred Hutchinson Cancer Research Center.  You can join our team Baldy Tops or give financially to Obliteride HERE.

*We will be planning some means of memorial in the future, but have no plans as of yet.

**Allistaire is alive in all of these pictures (with the exception of the very last picture of her toes), though they are either days or even only several hours before she died.  Some may find these very difficult to see.IMG_3726IMG_0657IMG_0659IMG_0236IMG_0733IMG_0736IMG_0760IMG_0849IMG_0884IMG_0887IMG_0895IMG_0897

Call Me Sapphire

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IMG_0676Each day, usually late in the afternoon, a call goes out, a harkening…”Let’s play family,” Allistaire implores.  And often a personal invitation, no, more like demand, is carried by messengers to individuals, “Sten, Allistaire wants you to come play family…Jojo and Taryn, Allistaire wants you to play family.”  It’s sort of weird because we’re already family so how do you play family?  Down in the Rec Room we go.  “Make a fort Mommy.”  And so I use the armoire and the hot pink tipi and we drapes sheets and Solveig recommends using hairbands to get the sheets to stay on the top of the tipi poles, it seems she’s done this before.  “No, turn the tipi around,” Allistaire says emphatically.  And we turn the tipi so that it’s entrance now is within the fort, so that it is a room within rooms and within it we put the pillows and the blankets and Allistaire is brought in and curls up tight in the little dark space, just a small pretend camping lamp inside to illuminate the curvatures of her sweet face.  She is always either the baby or the little sister.  This time it is just us girls and we are picking names for ourselves from the realm of jewels.  Solveig proclaims in loud voice over and over that she is Peridot.  Lucy considers the name Ruby.  Jo is Emerald and Taryn, Opal.  I choose Labrardorite, an ugly name but my favorite stone.  I’d heard that Allistaire had chosen Sapphire for herself, so I leaned my head into the door of the tipi to confirm.  “So you’re Sapphire?”  “Well,”and she considers for a long while, “I’m Sapphire Rainbow Sparkle Jewel.”  So as our play proceeds I keep calling her Sapphire Rainbow Sparkle Jewel.

“Mom, just call me Sapphire,” she says to me as though it was so obvious, I should have known.  And my heart smiles at her love of color and her delight in the fanciful, and my smile droops and the edges of my eyes tilt down, everything bathed in thin warm sadness.

“Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
How precious to me are your thoughts, O God!
How vast is the sum of them! (Psalm 139:15-17)

Outside are the exotic sounds of Sandhill cranes passing over in the cool gray of this Saturday morning.  In days of old, days far to rare, Saturdays in which we four were all living in this same house, we would sit at the kitchen island enjoying chocolate chip and apple pancakes.  How few have been those mornings and this morning?  This seems most likely Allistaire’s last Saturday morning, a reality the mind can sort of grasp, but the heart gasps and gags, and everywhere wide eyes and the question, how can this be?

It’s funny how a few days of the same thing can lull you into thinking, ah, we have this routine, this is the way things will go.  For Monday and Tuesday looked largely the same, with Allistaire sleeping in late until 10:30 or 11 and then we bring her up from her room to sit on the old green couch, the $1,000 Ikea couch now eighteen years old, faded green velvet that has been the backdrop for so much of my life.  Sten patiently works with Allistaire to get in all of her morning meds, with she often moving in what seems impossibly slow motion, her hand holding the pills just millimeters from her tongue for what feels like minutes.  And then I would scrounge around through the few clothes we brought and the bins and bins of Solveig’s old clothes in storage, to find a shirt that will fit over her grand distended belly.  And sometimes the exertion of all this resulted in her falling quickly back to sleep for a few hours there on the couch.  Eventually the cousins and the sister-in-laws would be beckoned to return.  Allistaire would perk up in their presence and remain awake and engaged the rest of the day, though in a far more subdued and constrained way than her old self.

Wednesday began like the previous days so we had planned to meet up at the Museum of the Rockies around noon, knowing the absolute exploding zeal my nephew, Eli, would have over the dinosaurs.  We brought the stroller and tucked Allistaire in under blankets.  The planetarium show was about to begin and so we funneled toward the door where I was stopped and told, “No Strollers.”  My mind and words fumbled and all I could get out was, “She’s on hospice.”  We were allowed to proceed and were met with some sad Adele song before the program began.  There in that alien like green like of the glowing domed ceiling, I cried and cried as Allistaire slept silently and Solveig held her hand.  These outings, these things meant for fun and education, possible now only because she’s dying.  I never wanted to bring her home to die.  Dr. Cooper always warned of “going down in flames in the ICU.”  That always held a certain appeal.  I had no problem with that idea.  Let’s bring this to an end hard and fast, fighting to the last moment, pushing for life and rallying every force to uphold life until in one swift strike it might all be done.  But this?  This simultaneous rapid yet so slow deterioration of the girl that burst with life, this fading and blurring, this slow strangling?

The hospice nurse, Joyce, came up Thursday mid-morning to draw labs.  When she was done I changed both caps and flushed both lines.  No, I don’t need any flushes or alcohol wipes, I am amply supplied with more than you can imagine as Seattle Children’s home care has always been over eager in their provision of line-care supplies.  Allistaire’s all set for the day and in early afternoon I head down to what used to be Walgreens Infusion Center but is now Option Care, to pick up hydration supplies and be trained on their infusion pump.  Angie (Dr. Ostrowski) calls me in the middle of our training time to give me lab results.  Almost amusingly her kidneys and liver look great, even her hematocrit has oddly risen from 30 to 35 since Monday.  Her potassium, phosphorus and uric acid are actually quite low which is strange given that these electrolytes usually rise with tumor lysis (cell death) which is clearly happening given her LDH which has jumped up to 1,700 (normal high is 200).

What smacks me in the face are blasts.  Thirteen percent of her peripheral blood are leukemic blasts, making the ABC (Absolute Blast Count) 700.  This is the first time I’ve seen blasts in her blood since November of 2014 and the onslaught is not subtle, they are coming hard and fast.  And I cannot tell you how savagely I detest blasts.  They are the dark hordes of an army on the horizon, advancing and destruction goes with them.  When I finally got home I was shaking from hunger and I did not want comfort.  My instinct was to take that pyrex bowl of pulled pork and hurl it with all might might, eager to see it smash and shatter with terrible violence.  We’ve been in this place before, nay, we’ve been in worse spots, but never, never have I had to simply stand back and allow this beast to take her.  Everything about this cuts hard agains the grain, my hands flex in fists and my jaw is set hard.  I want to bellow some primal scream, a wail, a fury.  Look!  Look!  The girl’s body fights on.  The kidneys, they hold.  The liver it holds.  The heart beats on.  The lungs fill, pulling in air and the blood sends the oxygen hurtling throughout all the furthest reaches of her flesh.  Her flesh fights on!  Are we to simply stand by?  Are we to be accessories to crime?

And my pleading question repeats, “Is there really nothing?  Nothing left for her?”  Have you queried all your contacts?  Have you circled the earth? Have you scoured and sought?

Nothing.  There is nothing left for her.

And I know, I know.  Ten million dollars.  Four and a half years.  Twenty-two long hard rounds of chemo.  One genetically modified T-cell therapy.  Two bone marrow transplants.  Three separate attempts at focal radiation.  There very best minds, tenacious wills and kind compassionate hearts.  And it’s not enough.  Still the cells march on and this time, this time there is nothing to stop them.

When I consider all that her little body has had to endure, what has been asked of it…numerous infections of RSV, C-Diff, Streptococcus viridans and typhlitus, on top of all the vast array of toxins gathered from the likes of the May Apple plant (Etoposide), the purple sea sponge (Cytarabine), soil bacteria, laboratory concoctions – sophisticated molecules with microscopic weaponry capable of disrupting mitotic spindles, slicing DNA and robbing the cell of its nutrients…I am in awe.  Her heart, lungs, kidneys, liver, immune system – they’ve all been called upon over and over to respond to the most aggressive of assaults.  They’ve rallied.  Her body has fought so hard for so long.  And it presses on, not knowing that this time there will be no special forces bring aid, there are no barricades.  There are now no means of escape.

I have heard Allistaire repeatedly described as incredibly strong and brave.  She is strong.  She was knit together with a fierce fortitude.  But she has never tried to be brave.  She has never attempted to rally her courage.  Rather she has yelled at times repeatedly, “I’m terrified, I’m terrified, I’m terrified!”  Fearful things have come and she has called them what they are and she has walked into the fray and over and over shown herself to be resilient.  Perhaps this is not an entirely fair description.  She has in fact learned to calm herself, to close her eyes and breath slow, to repeat to herself, “You got this.  You got this.”  And yet, it seems that she just just is brave and perhaps this is because she knows no other way.  When she was a mere 21 months old, she was called upon to endure, to press forward, to persist through pain, to do the hard thing over and over and over.  While she has experienced so much brokenness,  I longed to see what all this fortitude and perseverance would yield in her adulthood. What sort of woman would she become?

The world will never know Allistaire Kieron Anderson as a name on a resume or on a wedding invitation.  Her life has been cut ever so short.  But are these the right words?  Does this phrase really aptly describe?  What is true is that we all desperately wanted more.  My heart keeps whispering with sad insistence, it wasn’t enough.  I did not get enough of that girl.  There are not enough pictures of two sisters together.  My eyes will never get enough of taking in the sapphire sparkle of her eyes, the glee of her voice, the tenderness of her words, the curve of her chin and perfect dimples.  Is there anything more wondrous as a parent than getting to bear witness to the miraculous unfurling of a child’s body and spirit?  Do we not all stand in awe that are children’s legs, those legs which once curled up tight in our bodies, look, they are now so absurdly long.  How has this come to be?  How has cell added to cell to cell to cell to at last make this leg that can no longer fit on our laps but spills out all haphazardly and is quick to flit away?  How is this child recounting to me that the hammer head shark has two sets of eyelids?

But the question that keeps slipping in is this, What is the measure of a life?  By what standard do we proclaim with satisfaction, that a person lived a good life?  Whether we ever say it out loud or think to intentionally articulate it or not, we have engrained in our 21st Century American hearts and minds that we are due 80 good years.  Years that are marked by a happy childhood, great education, independence and self-sufficiency, a meaningful career and opportunities to explore the earth and delight in activities and accomplishments, to have a full family and at long last, to retire and spend our latter years in good health and leisure, and to eventually die surrounded by those we love and who have loved us and without pain or struggle.  That all sounds entirely wonderful and who could not or would not desire such a life?  We were created to long for life and life abundant with our whole beings, every fiber and cell intent on such vibrant life.  And in our time in history and in our western world we have been able to achieve what most of humanity throughout time and place have never known and thus our expectation is solidified and our shock and angst at not getting what we want, what we expect, intensifies and we yell out – it’s all wrong!  Six year old little girls should not die!

And the God of the Universe pounds His mighty fist in agreement and calls death the ultimate evil and promises a life to come wherein there will be no more death and there will be no more sickness or crying or pain.  Every tear will be wiped away!  Can you imagine?  And we turn to Him and rage and rage, “Then why don’t you stop this?!  Why withhold your arm that is supposedly so mighty to save?  Where is your salvation now?  Why do your turn your face away from this child?  Do you not hear the agonizing cries of those that have loved her and cherished her?  How could you possibly love this little girl if you are willing to strip away her life?  How can you call Yourself good?  And our hearts seethe and the acid of fury fills our veins and we declare with all our finite might – if you are any god ant all then you are no god I want, and we throw up our hands and storm away.

And like a parent with a child, our Father calls to us, He beseeches that we return to Him, that we take His hand and walk with Him.  That we trust.  That we cast our gaze out upon that incomprehensible sweep of space, of billions and billions of galaxies, of stars more numerous than the grains of sand on the seashore, that we consider the grass and flower that spring up for a day and then wither, that we observe the birds clothed in brilliant luminescent blue, that we watch the storm cloud racing across the valley and rising up the canyon with great flurries of snow, that we consider the glacier capable of gouging out the sides of mountains yet made of mere individual snow flakes too light to be weighed on a scale.  And He implores that we look within, into our own hearts, to the marrow of our lives, what dwells there?  Is there not a longing for eternity?  Is there not a deep grief for our brokenness, for our sin?  The God of the Universe, the Ancient of Days, the first and the last, He is not deaf to our fury, our desperate sadness.  He asks us to consider that perhaps like a child who cannot understand their parent’s reasoning, we sink deep into His love for us and rest, trust, to know that there are reasons beyond our understanding and that one day this pervading sorrow that fills the entirety of our view, will somehow be a distant memory, a minor pain as it sits alongside all the wonders of His fulfilled promises.

And it sounds audacious and we gawk at the thought that we should believe that.  And I do.  I do rest in the words of my Father because they have been far more than words.  Words that once were mere black symbols on the page, mere groupings of sounds, I have tasted of the Lord.  I have seen Him with my eyes.  I have heard His voice.  I have seen His hand in my life over and over and over.  And I will keep lifting my eyes to Him and I will keep lifting my hands to Him and I will keep lifting my voice to Him and I will keep laying down my life before Him and I will call Him Holy!  And one day I will see fully what is the measure of a life.  I will get to see the magnitude and the grandeur and bounty of what God can bring about in the small span of six years.

So my mind and eyes are set there and set here on this little girl who is slipping away from us.  Yesterday we went into the Cancer Center here in Bozeman (which is part of the Seattle Cancer Care Alliance by the way which means all you Bozemanites – guess what?  Your cancer care is directly tied to the research at Fred Hutchinson Cancer Research), so that she could get platelets.  Labs were drawn again and only one day later her blasts had risen to 21% in her blood with a total of 1,700 blasts.  When we finally arrived home she slept and slept.  In early evening the cousins arrived and dinner was nearly ready but I felt no desire for food, so I slipped out of the house to the quiet of the driveway where I could walk around the bend out of sight and just sit on the gravely surface, watch the grasses bend in the breeze, the birds flitting and twittering in the air and the hazy Spanish peaks in the distance.  I fiddled with rocks stuck in the road and remembered back to how Allistaire loved to pick out the tiny bits of colored recycled glass stuck amongst the stones.  I would find dozens of little jagged pieces of amber and green and white glass, and occasionally the treasured bit of aqua.  Then I heard my name, my mother calling, and I kept saying, “What?” and she wouldn’t answer and finally, “Allistaire’s having a hard time breathing.  Sten is looking for you.”

She was asking for oxygen and Sten said she was struggling to put together her words.  My eyes downcast, I flew to the phone to call Angie.  We had already planned to arrange oxygen to be brought up to the house; Allistaire’s oxygen saturation was down to 83%

I have no time to finish this post.  Allistaire is having seizures or strokes.  Her right side is limp and she can no longer talk.  She still hears us and understands – we have her raise her right hand for yes when we ask her questions.  Lord Come Quickly!

Good to Be Home

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IMG_0551IMG_0524It is strange to sit in my cushy arm-chair, to wake each morning while three others sleep and watch light overtake the earth, sun rising over curvature and bathing the evergreens in bright liquid green, the underbellies of clouds turning pink, the grasslands of the valley warming in yellows.  The aspens here are still leafless, but the snow now stands only in shady patches on the hills, amongst the trees.  Yesterday morning spring snow flurries filled the landscape with the swirl of bright white flakes against greening fields, the day warmed and the sky turned blue.

It feels so good, so utterly right to be home.  I feel a fool that we never even thought to include Allistaire in our decision-making about hospice, where she would end her days.  Then again, while I had considered on many occasions where I would want her to die, the truth is, the word “hospice,” absolutely knocked the wind out of me when it was first voiced last Thursday.  Hospice has always been linked with horror, the most inconceivable sorrow, the worst possible outcome. It is a word to turn from and flee from, willing your legs to run at speeds you didn’t think was possible.  All you want to do is to get away from it.  And as I have over the years been witness, sometimes from afar, sometimes closer in, to the end for many children, some going home, some dying in the hospital, I have asked myself, what would we do were it Allistaire?

Everything about the last four and half years has been held up against the question of, “what is best for Allistaire?”  All choices have been formed in accordance with the goal of providing her with the best possible care.  As I had considered those who went home and those who remained in the hospital until the end, I thought, oh, but I want so badly for those that care for my sweet girl’s body in her last days to know her as more than a body, to know the spunk and giggle of the girl whose body is betraying her.  I want to scream at the thought of her being viewed as only a heart rate, number of respirations, kidney function numbers, a pain plan.  No.  NO!  This is Allistaire Kieron Anderson, the child of my flesh, a girl hilarious and witty and beautiful and so very tender and kind of heart, a girl who will always entice you to play, who loves dress-up and colors rainbows endlessly.  It is this bright being, this girl who I so desperately longed to know as a woman, a girl who has fought so much harder than you can ever imagine, who has endured so much – she is to be handled with the greatest of care, with reverence, with delight and love.  And so I thought, I would keep her here, in this land where no only can she receive the absolute best of medical care with expertise in children, but with those who have cherished her, who have laughed with her, who have watched her grow up.  These are the people who in whom I will entrust her last days.

But somehow, it just never occurred to me that such a question might really matter to Allistaire herself and that there could be things even more precious than having those who care for her, know her.  So when we told her that she would die and asked if there was anything she really wanted, and her words came quick and clear, “I want to go home,” there was to be no denying her that wish.  And we scrambled to make that happen, and the honest truth is that I called out pediatrician in Bozeman to let her know we were coming home for a visit, primarily because if Allistaire died at home I needed Dr. Ostrowski’s help to know what to do.  Before I knew it, and without intending to, we had a “travel contract,” set up with Hospice of Bozeman.  And as we stood in the airport Saturday night with the sun going down over the Olympic Mountains, the land of my childhood, the thought of going home began to swell in my heart.  I knew that the setting of that day might be Allistaire’s last in the land of her birth, and yet home was calling in the deeps of me.

In the dark of night, the plane flew east, moonlight making the snow glow blue over endless mountains, the depth of the Cascades shocking in contrast with our perception of them from Seattle as simply a line across the eastern horizon.  On and on we flew, the mountains never seeming to let up.  The further east, the more my longing grew and in crept the thought, “I don’t want to go back.”  The urgency, the clarity of that desire turned more and more to resolve, the ambiguity of it transforming into solid matter.  I want to be home.  And why?  Why would we take her away from home again?  My rational brain spoke up telling me again how we didn’t know how well she could be cared for in Bozeman and Seattle was a land of plenty when it comes to medical care.  And while I conceded to that voice, still my heart claimed home.  And as I allowed my heart room to speak, again it became clear, how, how could we force her again to leave her home, a little girl who has hardly known home, who has been deprived of it, always being forced to buck-up and do the hard thing because the hard thing has been required to give her the best chance of survival.  But now?  Now?  Was Seattle really the only place that could provide her what she needed to keep her comfortable or could we perhaps find a way at home.

There are literally countless people who have been incredible gifts to us in this long, trying journey. And really, I think I’m tired of hearing people say “Cancer Sucks.”  With all my heart I wish Allistaire could have had the chance at a thriving life, but cancer, this wild, rogue cell of unfathomable complexity, in truth, I am in awe of it, it is a fearsome wonder that causes the humbling of the most mighty, the most intelligent, the most tenacious.  And cancer ushered us into a world we could have never chosen, a brutal road with hardships that have stripped us of so much, has gutted us and left us ragged and bleeding.  But along this very path I have at last been given eyes to see things I was previously blind to, and my wounded heart has been given entry into fellowship with those who also suffer and its longings have shifted.  This path we are told to fear, we are told to avoid at all costs and which really has stolen so much, has also had treasures scattered that can only be found here.  And it has been along this road that we have had the delight of having our lives being entwined with phenomenal people.

Dr. Angie Ostrowski has been one of many such folk and it is in large part because of her willingness to go above and beyond the requirements of her role as our pediatrician, that we can have the confidence and peace of having Allistaire remain at home.  Dr. Ostrowski came up to our home on Sunday afternoon and looked over Allistaire, a girl she has cared for the past four years, through two relapses and post bone marrow transplant.  She talked with Sten and I about our desires for Allistaire and how she along with hospice here in Bozeman and with Seattle ever available for consult, might be able to meet these needs and desires.  And while I suppose I already knew this to be true, I was reminded that even here at home, we have been blessed with excellent medical care, and more, a doctor who has known and loved my girl.

Sten and I both want what is best for Allistaire and ultimately long to care for her little self, the girl even more than the body in which she dwells.  For Sten there has been some concern about the potential difficulty of having Allistaire die in our home, and the impact of that memory for all of us going forward, however, in a commitment making a way for fulfilling as many of Allistaire’s desires as possible, we agreed to ask Allistaire whether she wanted to stay at home or go back to Seattle.  Originally our plan had been to draw labs on Monday and depending on how rapidly she seemed to be declining, we would decide whether or not to go back to Seattle.  But now, as we crouched before her sitting on the couch, and Sten asked if she wanted to stay or go back, again her words came without hesitation, as natural as breathing, “I want to stay home.”  And with that, it was decided that will not be going back to Seattle, and the absurdity of every asking her to leave home again was validated.  Why?  Why thrust this girl yet again from home?

And home, home, is not the very word calming, settling, restful?  Some think that we ought to cut our own days short when we see the likelihood of suffering coming for us.  I can only ask, what treasures, what sacred gifts might we be denying ourselves if we forego these last days?  Solveig and Allistaire sat snuggled up on the couch yesterday morning, holding hands and Solver’s arm around Allistaire, she nose sometimes nuzzling Allistaire’s bulgy cheek, Allistaire’s blue eyes looking out at valley and mountain and field.  Solveig reading story books to Allistaire while later she slept.  The two of them up in Solveig’s loft working on a craft.  Allistaire sitting with Uncle Peder, him teasing her, and her wry sense of humor jousting back.  Solveig, cousin Per and I clustered around the Candy Land board and later sitting out on the deck encircled around the little fire, roasting our marshmallows with Aunt Jo, perfecting s’mores and the challenge of just the right degree of toasting to pull of the crusty outer layer, the “scab,” and place it again over the glowing coals, the sound of wind chimes and deer in the field.  Solveig and Haaken and Per running down the driveway, flying the dragon kite with Allistaire tucked under blankets sitting enthroned in the cozy chair we set out in the grass.  Friends coming by with boxes of Kleenex and tasty food and love and a commitment to continue on as friends, never turning away when there are no words that can ease the pain.  Family flying and family driving from Washington all to gather round this amazing girl we have loved so passionately.  Home.  Where else could we possible want to be.  It feels so utterly right to be here, some satiation settling into the weary cracks of my bones.

Sometimes she sleeps when everyone is gathered round and talking and her body simply needs to rest all cozy on the couch.  And her tenacity remains as she insists on walking when it seems it could only hurt.  And somehow, the “Buddha Baby” look of being fluid over loaded, presumably from kidneys waning, has dissipated some so that her eyelids no longer seemed strained though her belly is still rotund and pulling her shirts tight, disappointing her that she could not comfortably fit into her mermaid costume.  And oddly her labs looked better overall yesterday, her creatinine down from .8 on Saturday to .52.  Her liver function numbers the same, her potassium and uric acid actually down and her GFR (rate of kidney filtration) improved.  Her platelet count and hematocrit still far enough above her transfusion thresholds that she should be fine for at least a few more days before another possible transfusion.  Her ANC is down a bit for sure and her LDH (and indication of cell turn over) rose substantially.  Thankfully her pain is under control.  While we have to handle her very gently given the pain movement causes her, at this time she is only on the extended release morphine tablets and hasn’t required anything additional.  She is sleeping peacefully at night and during her day-time naps.

It’s crazy how I still hold out hope, how I still think somehow this can turn around.  I guess the reality is she’s been in such desperate spots before, dark places with no seeming exit and against all odds, on quite a number of occasions she has made it out, overcome what seemed impossible.  The peaces comes quick when I am reminded that either God miraculously cures her or she dies.  Seems funny that this should bring peace but it does, because I have yielded this girl, handed her over to my Father and there is peace in no more wrestling, no more wondering.  Either way we are at home to stay.  We are never going back to Seattle to battle cancer.

We are thankful for the days given us, the hours, the nights that turn to morning.  It is perhaps the strangest of all to feel and know that we are eternal beings that making our dwelling for now in temporal homes, in vapors, as grasses and flowers that are here for but a moment and then wither and die and yet yearn for what we were meant for, a life that goes on.

Thank you to so many who have poured out your love and compassion on our family, for your passionate prayers, for your words when you feel your words fall flat and are insufficient, for your sweet faces and texts and cards.  Thank you to so many of you who have donated money to accelerate cancer research at Fred Hutchinson Cancer Research Center.  While I have respect for our devious foe, cancer, don’t get me wrong, I still intend to pursue that beast until it is slain and I greatly appreciate your support in this endeavor!  So below is a link to donate to Obliteride, and also a link for Bozeman folk who’ve expressed a desire to help us out with meals.

I should also note, we are not planning to have any sort of memorial service right away.  I do not want my time divided right now, I want to cherish these days.  There will be time later to plan how we want to mourn together and rejoice in her sweet life together.  However, knowing that such a time will come, it would be such a gift to us if you would send us a wee note of what you have loved about Allistaire, how her life and story may have had an impact in yours.  I will never forget the clarity of God’s words to me that gray December morning in 2011 and the peace that they wove in my heart – “Do not focus on all that you fear you will lose, but be expectant, be on the look out for what I will do, for the bounty I will bring out of this.”  While my hope for that bounty lies largely in heaven, it would bring such humbled joy to get a glimpse of God’s goodness here and now, in this world in this life.  So if you’d be willing to take the time, mail your notes to our address below:

14176 Kelly Canyon Rd, Bozeman, MT, 59715

Click HERE to help put an end to cancer and support me in OBLITERIDE!

Click HERE to sign up to bring a mealIMG_0463IMG_0465IMG_0467
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Blind Sided

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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.

 

Longing

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I was watching a movie…a man trudging through the snow, days and days, months of journeying, comes to the top of a ridge. Out before him unfolds an expanse of evergreen covered hills and mountains with snow, clouds settled in the low lands like a thin veil of blue. Everything in my heart heaved one groaned word, “home.” Oh the longing to go home, it pulls deep. The longing to at long last lay down the battle, to be at rest, to no longer strain, to be in the presence of those who love you, to feel safe, to cease the striving, to release, for all to be as it should be.

I hardly knew it was Easter. I mean the stores made it clear that it was somewhere on the horizon, but suddenly it was upon me, Sunday was coming. And I push aside all the eggs and the bunnies and candy and chicks like so much underbrush, hacking with machete to get where I’m going, to get home. To find rest. How timely that it is Easter for I am in ever so much need of rest. I weary. My heart faints. My face throbs from pain at the relentless tears. My voice feeble, oh Father how I long, long to curl up beside you, to have your mighty arm encircle me. I long for you, for that rest that Easter makes possible. And you stretch out your hand to me and invite me into that rest now. Come now, enter in, abide in Me as I abide in you.

We are in the garden and the serpent seeks to whisper disbelief, to suggest You Father are not really so good, are not really so kind, but cruel, a depriver of what I really need. And I see you there my Jesus, agonizing over what the Father has asked of You, asking if there be another way, oh let this cup pass, let it pass God! And when the answer comes, that No, No this is the only way, You yield. You say Yes to the Father and you lay down Your life. Your greatest work was to rest, rest in the Father, yield to Him.

Oh Christ, our great High Priest, our compassionate intercessor, hold up my heart. Enable me by your Spirit to yield, to yield, to say Yes Lord, Yes, You are good and I will trust in You, I will rest in Your holiness. I will take Your hand and follow wherever You will lead, even if into blackest of night. I lay down my life and it truly feels as if my lifeblood flows out. I am faint, so weak. But will I love as You have loved? Will I lay down my life, my vision for what my days on this earth were to look like, will I say Yes to whatever you deem best to love others?  Oh Father, you see them, you see those dear to me there…across the cavern, I hear their voices as though muddled through water or glass, I reach out but they are too far, so, so far. Will I say Yes Lord, she is Yours, and Yours to take? Am I willing to cross over into that dark, into that wilderness, that wasteland? I have always known this, the stark truth of it always, always looming in the periphery…You call some of Your children to go all the way down that dark road. You draw them into the black. Because only there can You demonstrate, not in word, but in reality, that I will find You in that darkness and You are the God that turns darkness into light.

Lord, I am far too small to say what is right, what is best. I know only that my whole heart longs for You. And I do say Yes to You, I will take Your hand and walk into the black because ultimately I do not despair. I know what happened, what we remember on Easter, I know You said Yes to the Father, You yielded to the Father and You were crucified for it. You were put to death and swallowed into the black. And yet, You rose, You overcame the power of sin and death and the tomb was empty and everything about those three days has everything to do with this day, and all the brutal days behind and the ones to come.

Hear my cry to You oh my God! Many recoil at this faith they find so absurd, so utterly foolish, so offensive. I know only that I love You my God. I have tasted of You and I can never walk away. Hold me tight. Gouge out my heart if You must, but Spirit, teach me the truth of these words of Jesus, “If any man will come after me, let him deny himself, and take up his cross, and follow me. For whosoever will save his life shall lose it; and whosoever will lose his life for my sake shall find it.” You are my hope, my home. You are my resting place, my Sabbath rest. It is only in You and through You that I have life and all will be made right. It is only because of You I have any hope of a gentle and quiet spirit, a spirit gentle and kind because I have been forgiven so much and a spirit quiet because in You it is finished, You sit at the Father’s right hand. All Your promises are Yes, and Your will be done on earth as it is in heaven.

I thought this afternoon I would sit down to write of nine tests showing no evidence of cancer in Allistaire, for in all nine I had word that every attempt to find her leukemia came up with nothing. A brain MRI, a PET/CT, a LP (Lumbar Puncture), ultrasound, peripheral blood chimerism and whole marrow chimerism, flow cytometry, pathology and cytogenetics – one by one the results trickled in over the course of a week. I would not claim victory until every last one came through. And even then, when my sister-in-law asked me if I was excited, I said No. No. We have had clear results before and the cancer has always been there, ever lurking, ever seeking to devour and destroy. I am thankful, of course. I am glad. I can breathe a bit easier, but at any moment, any moment, it could all change again.

I had hoped this transplant would at least give Allistaire time. Time. Time for what? Time for research to catch up with the complexity of these cancer cells that seem ever able to evade, time to design a full-proof weapon, time to make it down the road far enough for some new therapy to intervene before she be swallowed alive by this beast. I had started to dare look down the road, to think about the actual possibility of going home. Maybe she would be alright. Maybe it would actually make sense that I was teaching her to read. Maybe she would live long enough for literacy to matter. She said in the car this morning on the way to clinic, “I wonder if I’ll have babies.” Pain squeezed around my heart. “You probably won’t be able to have babies, sweet girl.” “Why not?” came the sweet voice from the back of the car. “The part of you that makes babies was too badly hurt by your chemo. But you could probably adopt babies.” Her face lit up. She liked the idea of that. And I told her, that if she lived long enough to be old enough to be a mom, that would be amazing enough, she would probably be okay with not being able to grow babies in her own body.

Our schedule only required we come in for her second set of labs for the week. We sat on the bench just beyond the elevators there on the 6th Floor at SCCA, the Bone Marrow Transplant floor. We had checked in and were settling into the wait and to begin our breakfast when Erin the P.A. said that Dr. Burrows wanted to talk to me about her PET/CT results. Instant panic. Instant terror, a swallowing, the world turning black, cold down the neck, drowning, it’s coming, it’s coming, I know what’s coming, I’m going down and like that every hope was snapped off like a dry twig.

We were taken to the conference room and I handed Allistaire my phone with the sound turned off, and she turned to Toca Boca Hair Salon and proceeded to spray the girl’s hair pink and purple and green. And Dr. Burrows came in and looked at my face and asked how I was and I stood there with a great blade struck through my torso, the blood already staining my shirt and the beads of sweat on my forehead and the color gone from my face. And she went onto explain that the while the brain MRI had originally been read as everything being clear, because the PET/CT showed an area of FDG brightness of 4.0 (normal being 3.0 or lower) in the exact area that her chloromas had been, this prompted a second group review of her past and present scans. In short, there are changes in the tissues in her right sinuses, changes that may be because of her significant cold, due to the human metapneumovirus which has yielded phenomenal amounts of snot for the past month, or it could be disease. It could be leukemia. There is no definitive way to tell at this point. We’ll have to rescan in a month. We’ll look again when her cold has cleared and the tissues in her sinuses have had time to return to normal if it really is only the impact of this virus.

Yesterday I woke several times in the night. Ava. Ava. Ava was always there. Immediately. Her name was the first thought formed, resounding, pounding. Then next there was Esther, her mom, my friend, my sister in Christ. Esther. My friend flailing in the water, struggling to catch her breath as the relentless waves threaten to swamp her. And we’ve been texting and she tells me it looks like the tumors are coming back and she cries out into the black, looking for a way through the thick dark, looking for a ray of light to get her daughter through to the other side of this cancer, this ravager of her flesh. And I have no life line for Ava’s flesh and I pray to God that He would work through Dr. Cooper. But to Esther I speak our Father’s promises, I ask His Spirit to speak His words of encouragement, of peace, courage my sister, courage! The very same power that the Spirit exerted to raise Christ from the dead is at work in us!  If even the worst comes to us, our Father will carry us, bind up our wounds.

It is strange to dwell in two worlds, to have your heart so firmly planted in both, the temporal and the eternal.  We’re sitting on the $40 Ikea rug putting together her Elves Lego set she got for her birthday.  I love to watch Allistaire’s face.  To catch the light skimming across the delicate peach fuzz of her deliciously adorable cheek, the perfect little swoop of her nose, her long thick lashes growing back in, the delight in her eyes as she tells me a story, the movement of her lips with voice just so sweet.  I watch her two small hands struggle to get the Lego pieces to fit together just right.  To know her is to know a hundred-thousand million delights.  The thought of losing her, of having her absence an ever-present ache and sting, oh how can we bear up under such sorrow?  How can some stupid little cells take that all away?  Is there really, really nothing we can do to get rid of them?  I think of the life we could have had.  Six years old and what has her life looked like?  And who might she be in the world if she just had a chance to live?

Today is Good Friday, a name that still doesn’t sit right.  I don’t know what would be a better name, maybe Brutal, Wretched, Agonizing Friday?  I can’t stand it when people try to comfort me and brush aside all the pain and the sorrow and focus only on the good.  I know they’re just trying to help, desperate to alleviate some of the sadness.  But this is real.  This is not a movie.  This is not a story.  This is my child.  This is my life.  This is my flesh bleeding out.  And I actually have to live every day looking at my beautiful child’s face knowing tumors may be growing even now, to one day deform and strangle and leave a gaping, ragged hole in my life.  And Christ really did die an agonizing death on a cross because I really have sinned, sinned long and sinned hideously and shaken my little fist at God so many times, spitting on His name.  Those ten commandments – I’ve broken every single one.  And I don’t even have to look out in the world, to Belgium or Trump or some slum in India with little children begging for food, to know just how broken this world is.  I live it everyday in my impatience and arrogance, my selfishness and covetousness, my anger and laziness.  I live it everyday as I scan the details of Allistaire’s labs, and MRI reports and research abstracts and Facebook posts about another friend’s child whose tumors are spreading and he’s losing control of his limbs and his body that was headed toward manhood is growing weaker and weaker.

Good Friday?  It is only good because we know what happened on Sunday and Sunday could never be had we not first lived through Friday.  Easter has everything to do with cancer and it has everything to do with my weariness over having to ask Allistaire for forgiveness again because I tore into her with my words and did not treat her with gentleness and patience.  I wake up from a restless night, neck and shoulders aching, still tired.  And the memory of all the sorrows that I laid down with at night come slamming back into my consciousness with the weak morning light.  But it’s Good Friday and I know because of what happened on that hillside in Jerusalem a few thousand years ago that is not just a story, that His mercies are new this morning.  His manna is here for me to gather today.  He will be faithful to carry me today and every morning I wake up to another day in this life.  Christ Jesus said Yes to the Father and He laid down His life, and it was through this very act that He overcame the power of sin and death.  He found His life because He laid it down before the Father.  So as this day dawns I know death will not have the last word.  My sin will not have the last word.  All these sorrows will be redeemed.  Life will rise up and all our tears will be wiped away.

“Do you not know that all of us who have been baptized into Christ Jesus were baptized into his death?  Therefore we have been buried with him by baptism into death, so that, just as Christ was raised from the dead by the glory of the Father, so we too might walk in newness of life.  For if we have been united with him in a death like his, we will certainly be united with him in a resurrection like his.  We know that our old self was crucified with him so that the body of sin might be destroyed, and we might no longer be enslaved to sin.  For whoever has died is freed from sin.  But if we have died with Christ, we believe that we will also live with him.  We know that Christ, being raised from the dead, will never die again; death no longer has dominion over him.  The death he died, he died to sin, once for all; but the life he lives, he lives to God.  So you also must consider yourselves dead to sin and alive to God in Christ Jesus.” Romans 6:3-11IMG_9246IMG_0257IMG_0255IMG_0247IMG_0239IMG_0238IMG_0230IMG_0229IMG_0224IMG_0219IMG_0216IMG_0215IMG_0131IMG_0183IMG_0188IMG_0193IMG_0199IMG_0211IMG_0119IMG_0115IMG_0110BTIZ2720IMG_9936IMG_0117OMSP2016FICC3705CFNU6254IMG_9925IMG_9930IMG_0041IMG_0040IMG_9905IMG_9902PNPW5709SLGX7998MIOJ4337IMG_9890WBAZ5922NHPA6213APVN6736QVBZ7497ENJE7790IMG_0034FullSizeRender-51FullSizeRender-50IMG_8960IMG_0025IMG_0023IMG_0021IMG_0020IMG_0018IMG_2824

Stirrings

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IMG_2802 IMG_2798 IMG_2794 IMG_2791IMG_2811I grew up in a land of unfoldings.  A land where one must bend low, look now, another unfurling.  A land of delicate magic, intricate.  Stepping over branches slick, footsteps quiet on the soft underfloor of forest.  Ferns unwinding, their beings all folded up tight in complex arrangement, arching their backs, rising toward the light filtering down to them from high in the silhouettes of tree tops.  Little ferns with leaves paper-thin, bright green in direct light, countless shapes repeating.  Fuzzy juicy stalks and delicate sleek black ones.  Mosses creeping, covering like downy shawl a glorious, vigorous green.  Everywhere lush.  I recall making a fern fort once.  Ripping up scores of Lady Ferns, weaving them into walls and overhanging.  I lay down upon the mossy floor and looked up through that scattered light, the greens bright like stained glass.  Ferns and moss, resplendent greens of life unrelenting, delicate yet most resilient.  Two gifts of this earth instantly inciting glee in my heart.  Like Thoreau, I repeat, “I think my own soul must be a bright invisible green.”

And birds.  Oh the birds.  Fat breasted robins calling in the early morning when light has only begun to seep.  Chatterings, bushes alive with tiny throbbing birds.  Evening calls as day calms toward night.  The days are lengthening.  Crocuses and daffodils thrust up from the dirt.  Cherry blossoms pink, forsythia and azalea.  Tiny white clusters like thick stars on the limbs of apple trees.  This is something Washington has that our home in Montana never will.  Spring.  Winter turns almost suddenly to summer in Montana and doesn’t come until June.  But here, in this land, the drear of February, a time when the weariness of winter starts to become intolerable, it catches you off guard…there, did you see it?  Stirrings.  Hints that winter will not forever stake its claim.  In the cold of ground and the rigidness of trees and branches, life still courses.  Somehow what looked vacant, dead, unmovable, is everything to the contrary.  Nay, there is an overcoming, some inner working unseen to my eyes, yet with such vigor as to burst through rock and soil and press out of wood and limb.  A draw from distant lands, a call for the birds to return.

Spring is as sure as anything in this life.  We know it deep in our flesh, our own veins course with anticipation.  An inclining.  An unconscious arching toward light, a yearning to feel warmth of light and freshness of breeze.  Some mineral tang on the tongue that declares life never ceases, though all appears to disagree.  That’s what we’re banking on, that is what moves us through our days.  A hope.  Hope.  Such an overused word.  But no, no.  It is not merely some ancient knowledge that the earth will continue spinning on its axis, marking countless days and nights and a relentless orbit that will always swing back toward sun.  No.  Hope is unique to our humanity.  Hope looks about and not only says, but proclaims, what I see now is not all that there is, there may indeed be more and different.  Hope looks forward.  Hope is the very essence of endurance.

There are stirrings in the woods, stirrings of song and light and delicate unfurlings that press against the dark and the cold.  It makes me giddy.  Giddy that death will never ultimately overcome.  Giddy that the world is arcing in its orbit toward the sun.  Giddy that one day the land will be bursting with life and the sun will rule the day and their will be an unstoppable flourishing.  Abundance will mark life.  No longer scarcity.  No longer mere grasps at survival.  No longer decay and death.  The greens are unfurling.  The birds have begun to call out to the morning.  Spring is that tangible bright expression of the hope that courses through me.

And I have much to be giddy about.  Hope abounds.

The land is wakening and it lightens the step and everywhere there is more to smile about.  And Allistaire is doing just so surprisingly well.  Dr. Sohel Meshinchi, our current BMT (Bone Marrow Transplant) clinic attending doctor, has ended our last several clinic visits with the statement, “I have no concerns.”  This is like balm to the feverish forehead of a cancer parent.  Her labs continue to look great and even improve.  Her red blood and platelets are recovering, with platelet transfusions being spread out to one or two a week, whereas they had been every day to every-other day.  Robin, our clinic nurse the other day said with glee, “Look Jai, look here at her ANC (Absolute Neutrophil Count), it’s normal.”  She looked at me with shining eyes.  Normal.  2,612  What an amazing number.  What a wonder?!  Normal.  Imagine that!!!!  Her liver function numbers have improved substantially and are only slightly high, her kidneys continue to do well and her BNP (measure of heart distress) was down to 119 the other day, a gorgeously low lab value.  She continues to be CMV negative (Cytomegalovirus which can reactivate).  Her weight is good as her appetite improves and taste buds return to normal.  She has begun to eat salad, and even declares its tasty with the exception of the one half of one grape tomato I force upon her which causes her to dramatically grimace and gag every single time.  She skips and paints and rides her bike and sings really loud with her headphones on.

Today marks Day+43 post transplant.  We are still very early in this very long process.  My brother asked me a while back, when we would know if the transplant was successful.  Success is multi-pronged in this situation.  The first mark of success is that she has survived the actual transplant process itself.  Her body and specifically, her heart was not overwhelmed by the cytokine storm of the infusion of the donor cells, nor the hyper-hydration necessary with the chemo.  The cyclophosphamide did not cause the slim but terrifyingly possible acute heart damage.  Her lungs did not bleed nor did she have the brain damage possible with MMF.  Her liver remained healthy despite the increased risk of VOD brought on by several rounds of Mylotarg.  Her graft did not fail, rather Sten’s cells have latched on forcefully resulting in 100% chimerisms.  Her marrow is clear of detectable cancer both by Flow Cytometry and cytogenetics.  Thus far, her transplant has been a success.  It is a beautiful surprise.  Allistaire’s golden birthday is coming up soon and honestly, as I look back, this is the fifth birthday that I never knew would come and had much reason to think it never would.  It is the fifth time we have had cause to celebrate life that might not have been, life that has been relentlessly hounded by cancer.  But hope has continued to mark our days, and now years.

This next phase of transplant continues to be about making sure the cancer is kept away and about being on guard for GVHD (Graft Versus Host Disease).  Every two weeks she gets a LP (Lumbar Puncture) in which Intrathecal Chemo is given and a sample is withdrawn to check for disease.  This means chemo is placed directly into her spinal fluid as it can be a “sanctuary for leukemia,” given the blood/brain barrier that does not otherwise allow chemotherapy to pass through.  While CNS (Central Nervous System) relapse is less common in AML (Acute Myeloid Leukemia) than in ALL (Acute Lymphoblastic Leukemia), the more common form of childhood leukemia, it is still a danger.  She will get 5 LPs in all post-transplant.  So far, her LPs have not detected any cancer in the spinal fluid.  She will also be getting a BMA (Bone Marrow Aspirate), and PET/CT on March 15th.  Typically BMAs are done post transplant only on Day+28 and Day+80.  But for high risk patients they include another intermediate BMA.  March 15th will be her first PET/CT since November and before her last round of chemo pre-transplant.  At that time, her body was clear of chloromas with the exception of those in her sinuses, which had reduced in bulk from the previous round of chemo but were still present along with one new small chloroma.  While her sinuses received 5 fractions of focal radiation and her body was barraged with TBI (Total Body Irradiation) and systemic chemo (fludarabine and cyclophosphamide), I am still nervous about this upcoming scan.  Her cancer has defied countless assaults, its tenacity awe-inspiring and terror invoking.

At this point, there is no evidence of her disease.  I rejoice at this and simultaneously remain on high alert, knowing “no evidence of disease,” in no way means we can confidently say there is no disease.  The other significant issue the doctors and I are ever watchful of is GVHD (Graft Versus Host Disease). GVHD is when the donor cells attack the host (Allistaire), most commonly in the skin, gut and liver.  GVHD is always a concern in bone marrow transplants but especially so in Allistaire’s case because of the much greater mismatch to Sten.  Common symptoms of GVHD include skin rashes, tummy pain which can cause the patient to stop eating, diarrhea, and elevated LFTs (Liver Function Tests).  There is a strange love-hate dance with GVHD.  GVHD can severely impact quality of life and even cause death.  What starts out small can suddenly turn into “rip-roaring GVHD,” so caution and response is necessary.  But the treatment for GVHD has its own consequences.  Immune suppressants such as prednisone and cyclosporine are given to tamp down the aggravated response of the T-cells.  However, not only can these drugs have devastating effects on bones and joints (it’s not uncommon for teenagers to get hip and knee replacements), but the rest of the patient’s immune system is suppressed along with the T-cells causing the GVHD.  This means the body’s ability to fight infection is radically diminished, again sometimes resulting in death from infection.  In addition to the complications to be avoided from responding with medication to GVHD, the doctors actually want some GVHD.  The thing is, when the donor cells are ramped up and attacking the host/patient, there is also the potential for the GVL effect (Graft Versus Leukemia) or GVT (Graft Versus Tumor in non-leukemic transplant patients).  This is the secret weapon of stem cell transplants, an army roving the body to wipe out anything foreign which includes any lingering cancer cells.  The hope of a transplant as a cure for cancer does not rely solely on the intensity of the conditioning, but rather, the more sophisticated element of the transplant is its micro soldiers that infiltrate the whole body and have the lasting ability to eradicate cancer.  This is the  “immunotherapy” element of a transplant.  This is where I swoon.  Don’t you just love it?  And it has taken decades of research to begin to tap these mysteries.

A virus has taken up residence in Allistaire.  Interestingly, it is a virus which even the most sensitive viral tests at SCCA cannot identify, never the less, she has had copious amounts of snot and some coughing.  It is her first cold in over a year at least.  With this virus we have seen what may be a small flare of GVHD, evidenced by a red spotted rash on her cheeks, spreading out from near her nose.  Additionally, there seems to be a bit of a bumpy, slightly patchy pink rash on parts of her arms, back and chest.  I was instructed to watch carefully for its advance both in terms of spread and speed.  When Allistaire received the infusion of Sten’s stem cells (say that 5 times fast), she was given some mature blood cells from his peripheral blood but primarily his stem cells.  Because the mature blood cells she received from her have mostly died out at this point, the immune fighting cells in Allistaire’s body are immature and have never been exposed to pathogens and are presently “uncoordinated” in their assault on this viral invader.  Hence, both the virus and places like her skin are under attack.  Apparently this pairing of having a virus and a flare of GVHD is very common.  In fact, when there is evidence of GVHD, the doctors then go looking for an infection.

The other possible cause of this potential GVHD flare is the removal of one of her immunsuppressants and the tapering of the other.  According to the protocol for her transplant, her MMF was to be stopped at Day+35.  Typically at SCCA they would rather taper the MMF rather than stop it abruptly.  However, Allistaire has clearly and repeatedly demonstrated that she has very aggressive disease putting her at extremely high risk for relapse even now.  Removing the immune suppressants releases the hold on the T-cells which we hope will identify and wipe out any remaining cancer cells. For this reason, the doctors are very motivated to remove all immune suppression as rapidly as is safe to do so.    So about a week ago her MMF was stopped all together.  Then this Monday, 2/22, we began to taper her tacrolimus on Day+41, whereas the protocol calls for the taper to begin on Day+180.  During this tapering process, she will be “watched like a hawk,” as the BMT staff seems to like to say, looking for any signs of GVHD and potentially backing off or slowing down on her taper if necessary.  I am told that in these Haplo transplants, it is more common to see GVHD later than in unrelated-matched donor transplants (probably because of the post-transplant cyclophosphamide).  More typically, acute GVHD is seen around Day+60 and later.

There is in the transplant world a magic number.  One-hundred.  One-hundred days is a song, like some mantra, some enchantment, a mystical goal out there in the fog.  The standard is that, baring any serious complications, a patient’s Hickman line is pulled on Day+100 and is allowed at long last, to return home.  I haven’t calculated the date exactly, but I know in Allistaire’s case, Day+100 is somewhere around mid-April.  It’s out there.  The date I avoid, I skirt around.  I only allow it to linger in my periphery.  I will not look it straight on.  I am too well acquainted with disappointment.  I keep my head down and we trudge on, willing ourselves not to be tired, not to be discouraged.

In August 2013, I was told in the most direct way, that Allistaire’s only chance for survival was a second bone marrow transplant.  At that time, she was only Day+50 post her first transplant.  You must wait an absolute minimum of six months between transplants to even have a chance of survival.  For us that meant December.  December was impossibly far off and the idea of going through it all over again was the most overwhelming moment of my life.  People say the day of diagnosis is the worst.  I most heartily disagree.  When you are diagnosed, most of the time you have a plan, a means of response, hope that you can make it through.  But what about when you’ve done the thing you came to do?  You tried the big gun.  And it just didn’t work.  It wasn’t enough.  And now your foe is even stronger than when you first began because it has mutated and become resistant at the very same moment that you are at your weakest, your most worn-down.  But then Allistaire went back into remission with one round of chemo and there continued to be no more evidence of her disease as she completed a total of seven rounds of chemo post transplant.  So when the day came for her one-year post-transplant follow-up and all looked well, I kept quiet.  I was so very tired you see.  I never asked about that second transplant.  I just smiled and let myself finally feel a bit at ease.

Looking back, I understand the depth of that woman’s fatigue, but part of me screams, “You fool!”  What if we had done that second transplant then?  Her body was in great shape.  No heart failure.  No evidence of disease.  A perfect time really for a second transplant.  But I didn’t ask.  I was tired.  I just wanted to run as fast as could out of that cancer world and have a shot at normal life.  Well, really I can’t remember if I asked or not.  But even if I did, I must have accepted that answer.  I’m not going to let that happen this time, no matter how weary I may be.  I keep pressing the question.  What are we doing to help prevent relapse?  Okay, okay, we’ll do that, but what else can we do?  What about this?  What about that?  As with so much in the world of cancer treatment, we are dealing in the world of utter unknowns.  Dr. Meshinchi told me today that Allistaire’s specific MLL (Multi-Lineage Leukemia) translocation where chromosome 11 just broke off and attached to another chromosome, is unique among the 3,000 pediatric AML samples he has in his database.  There is no data to say what someone is Allistaire’s very unique situation most benefits from.  And every form of treatment has the potential for side-effects and the question is always, are those potential risks worth the unknown, untried benefit?

For now the plan is this: we will rapidly taper off all immune suppressants as fast as possible while trying to avoid GVHD in any severity.  The hope is to allow the T-cells to have the brakes taken off of them and allow them free reign to roam wide and vigorously to eliminate any remaining cancer cells.  Ironically, if there is no evidence of GVHD, we are planning on a bold move, rarely attempted, to elicit a GVHD response.  The goal is to be off of all immune suppressants by Day+100 and if at that time there has been no evidence of GVHD, Allistaire will be given DLI (Donor Lymphocyte Infusion).  DLI is an infusion of just lymphocytes from Sten.  There are probably enough stored cells from his stem cell donation to get the necessary number of lymphocytes.  If not, he can do a simple blood donation which would not require GCSF shots because it would not include stem cells.  These donor lymphocytes would be infused into Allistaire in hopes that the white-blood cell hunters will recognize Allistaire as foreign and go on the war-path.  Soheil does not recall them ever trying this “prophylactic” DLI approach.  DLI has been given in the context of minimal residual disease in hopes to wipe out tiny bits of cancer, but never or very rarely when there is no actual evidence of disease.  If she were to get DLI and it was well tolerated, she would be given a larger second dose about a month later.  This also means that we have a good chance of having to be out in Seattle longer.  It is all a matter of waiting and seeing.

A few weeks ago I found myself feeling extremely down, baffled and frustrated with my deep sense of sadness.  We had just been discharged from the hospital and moved into our apartment at Ronald McDonald House.  Allistaire was doing amazingly well, yet I could not shake saturating sadness.  It was an act of will to hold back the tide of tears threatening to swamp my little boat.  Perhaps like a runner in an ultra-marathon, having finally made it through transplant, I found all my reserves of energy come crashing down.  I felt tired to my very core.  When I tried to force myself to look up, all I could see were the sad, tired faces of my friends who have lost their children.  I kept thinking of Stevie and Lilly reduced to ashes.  How many?  Sara, Ruby, Mario, Benton, Jaxon, Tristin, Christian, Pantpreet, Nolan, Jordan, Marleigh, Howie, Cyrus, Zach, Karlee, Bella, Lilly, Stevie.  These are the children who have died in the time Allistaire has been in treatment – children and/or their parents that I have known – not even close to the total number that have died.  These are the faces I have known.  Though I have much to rejoice in with Allistaire’s progress, it has sometimes felt like her death is inevitable, just a matter of time.  Sometimes my whole vision is consumed with the bright faces of children gone still.  Home and a life freed from the grips of cancer sometimes seems like an impossible dream.

But there are stirrings see?  Whisperings.  Eyes a blaze with zeal.  Minds whirling with ideas.  Happenings.  Little discoveries and victories that are starting to turn the tide.  As the earth has reached the furthest reaches of its orbit, it has begun its journey back toward the sun, the earth warming and throbbing with life, unfurling.  There are stirrings too in the world of cancer research.  Great wonders have begun to be revealed.  While it has literally taken decades and decades of research to get here, there is now starting to be a new world of promising cancer treatments which look in and down to the genetic level, down to the world of molecules.  Immunotherapy, in which the intricacies of a patient’s own immune system is harnessed to track down and obliterate cancer while sparing healthy cells, is making incredible advances.  Like a wild-fire that starts with a mere spark, so it seems is the world of immunotherapy.  There is hope that the world of cancer treatment is on the verge of a tremendous revolution.  There is hope that we are on the cusp of seeing a future for cancer patients that will look radically different from that dominated by the standard weaponry of chemotherapy and radiation.

Right at the center of this immunotherapy revolution in cancer treatment is our much beloved Fred Hutchinson Cancer Research Center.  Check out this article from The Huffington Post that tells about the successes of Dr. Stanley Riddell of Fred Hutch which has yielded amazing results: putting cancer patients who have failed all other forms of treatment into remission at staggering rates using T-cells.  Everywhere I turn at Fred Hutch there are new amazing trials and areas of research underway.  Allistaire’s clinic attending, Dr. Soheil Meshinchi, and our dear Dr. Marie Bleakley are working on designing TCR T-cells that target highly specific proteins found only on leukemic cells.  I sit and ask Soheil question after question and listen with mouth gaping, on the edge of my seat, eager to hear where the world is headed.

But there have also been moments as I’ve sat in wonder that I also find myself grieving.  All of these advances are far too late for the eighteen children whose names I listed above.  Much is even too late for Allistaire.  Just four years have passed since she was first diagnosed and already the treatment of AML has changed.  There are new tests done at the point of diagnosis to better determine what course of treatment works best with the individual’s unique disease.  There are new treatment options that simply did not previously exist. It was only in April 2012 that the very first child was treated with genetically modified T-cells.  I wonder what it would be like if Allistaire were diagnosed today, rather than four years ago.  How much better would her chance of survival be?  I also hear Soheil mention over and over again, “it’s a matter or resources…if we had the resources…”  Resources!!!!!  Sometimes I want to scream.  So you mean, if you had the resources you could do this and this and this and give my child the treatment she so desperately needs?  But you see, resources are scarce and government funding has been in short supply.  These very brilliant, intelligent brains that should be devoting their time and energy to research, to what their good at, have been having to run around trying to scrape up money to keep their labs going, to find a way to pay to design that test, that piece of equipment, get the research from the lab to treatment in the clinic.

You know what I want to see?  I want to see cancer research accelerated so that fewer kids and moms and brothers and friends have to have their lives cut short.  I want to see treatments that actually cure! I want to see treatments that cure without poisoning hearts and kidneys and brains!  I want to watch in wonder as scientists learn to use our very own beautiful, wild, amazing immune systems to obliterate cancer.  And science is science – all these advances in understanding the genetic base for not only cancer, but for so many diseases, and how to make genetic modifications and therapies promises to benefit lives touching each one of us!

I’m going to get on my bike again this summer of 2016 and ride to accelerate research, to save lives faster, to obliterate cancer.  I’m on Team Baldy Tops again this year in Obliteride and I’d love to have you join us!  Come on out the weekend of August 13-14th and ride with us.  There are routes for every skill level, from 10 miles to 150 miles.  If you’re not up for riding, you can still join our team as a virtual rider and raise funds for cancer research.  And easiest of all, you can donate!  One-hundred percent of all funds raised in Obliteride go to cancer research at Fred Hutch!

Hope is being able to imagine a world that looks different than it does now.  The cold and dark of winter is turning toward the bright zeal of spring.  One day kids diagnosed with cancer won’t have to die, but can be cured and go on to flourish in this life.  One day your mom, your wife, your sister, your daughter won’t have to fear breast and ovarian cancer and having to make the brutal choice of whether or not to cut out chunks of her womanhood.  One day you won’t have to watch your dad whither away or lose your best friend.  While my ultimate hope for life overcoming death rests in Jesus Christ and His promises of redemption, resurrection and a new heaven and a new earth, it is joy to see His grace in this lifetime as this vicious disease has begun to meet its match.

I will ride in Obliteride again this year because I will forever be indebted to Fred Hutchinson Cancer Research Center.  Allistaire would not be alive today were it not for the research, the clinical trials and the treatment she has received through Fred Hutch.  I ride in gratitude for my child’s life.  I ride in sorrow for the children I’ve known who have died.  I ride in hope for cures for cancer!

Check out this great video of Allistaire promoting Obliteride, now showing in movie theaters in the Seattle area.

Donate HERE to support me in Obliteride to end cancer!

Check out all the details at Obliteride.org

See what Obliteride looked like last summer and catch glimpses of our awesome Team Baldy Tops

Learn more about Immunotherapy

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Numbers, Wild Numbers

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1975

2013

2,650,000

6,800,000

8,000,000

So something cool happened.  Forty years ago, in the year 1975, I was born.  I know, sweet, huh?  Just joking.  I mean I’m pretty stoked I was born but what my parents could not have imagined as they gazed down at their newborn baby girl’s little face was that something else significant had just been created.  Little did they know that blue-eyed baby girl cradled in their arms would one day desperately need what also had its beginning in 1975.  In many respects I think it is grace that we do not know the future, that we don’t have to carry burdens in the present of situations yet to come.  At that moment of my birth there was only joy, well my mom would probably say a little pain too.  And yet isn’t it amazing that long before we have a specific need, the provision is often already on its way to being available and ready for us? And so it was that in 1975, Fred Hutchinson Cancer Research Center came to be and would one day dramatically intersect the life of that little baby girl and her baby girl.  Beautiful.  Makes me smile BIG!

In the spring of 2013, there was a blue-eyed feisty three-year old girl named Allistaire.  Turns out she had an aggressive type of leukemia that just wouldn’t back down in the face of every type of chemo thrown at it.  It had come back after lying dormant after standard treatment and this time it was winning, filling her marrow and infiltrating the rest of her body with numerous tumors.  The doors just kept slamming closed.  But then, but then…a door opened.  Allistaire had the amazing opportunity to have her disease filled marrow obliterated and then rescued with an infusion of donor bone marrow stem cells from a woman in Germany.  This was only possible because of a wondrous clinical trial through Fred Hutch.  Had it not been for that trial, for that single open door, there is no doubt Allistaire would be dead in the ground right now.

Time after time Allistaire has been the blessed recipient of the expertise and amazing research through Fred Hutchinson Cancer Research Center.  I will always be indebted to that institution and its many phenomenal doctors and support staff!  It is my joy to commend them to you and to keep seeking to add to their ability to propel research forward and provide more open doors for children and adults alike who find themselves facing that wretched beast Cancer.

And WOW!  WOW!  Look at what we’ve been able to do!!!!!  This year, in August 2015, thanks to your incredible generosity, compassion and support, our Obliteride Team Baldy Tops raised $38,000!  In total over the past three years riding in Obliteride, our team has raised nearly $60,000 for cancer research at Fred Hutch.  This year’s ride raised $2,650,000, totaling $6,800,000 since the inaugural ride in 2013.  One hundred percent of that $6,800,000 goes directly to cancer research at Fred Hutch!  It makes me giddy.  Sometimes one’s efforts feel small.  It’s hard to put yourself out there and ask people to give of resources they could spend on themselves, and instead give it away for the betterment of others.  Then again, you never know when you might find yourself in the desperate position of needing another open door in your own battle against cancer.  When we put our efforts together they can have a BIG impact!!

Would you like to join us?  Our team this year was super fun and included Sarah from Utah – an amazing woman I had never actually met until the morning of Obliteride.  You should have seen her face when she finished her 50 miles – a beaming exuberant smile!  Also on our team were two fantastic nurses, Lysen and Adrienne, from the Cancer Unit at Seattle Children’s where Allistaire receives treatment.  Adrienne and her awesome dad rode on an old tandem bike (and I do mean old).  Carrie, our amazing financial counselor at the hospital joined us as well along with her friend Eric, a local business man who wants to give back.  And of course I had my dear sweet sister-in-law Jo by my side along with my oldest friend, Emily.  Jo’s sister, Annie, also joined us.  Her little baby boy, Marzio and husband, Franky cheered us on.  It is such an amazing experience to be in a swarm of people gathered together for one purpose, each brought to that day by their unique stories.  Obliteride has put together a short little video of this year’s ride to give you a taste of the experience.  You’ll get to see several shots of our team (I have on a blue helmet you see a few times.) Click HERE.

The beauty is you don’t have to be a cyclist to participate in Obliteride.  There are rides from 10 miles to 150 miles, from quick and easy, to covering two days and lots of hard-core hills.  Wherever you are on the cycling spectrum, there’s a place for you to have fun and give directly to cancer research.  Even your kids can get involved with the special kid’s ride.  The 2016 ride is over the weekend of August 12-14th, so mark your calendars to ride with us or be a volunteer.  Registration will open early 2016 and of course I’ll keep you updated!  If you’re interested in being on our team Baldy Tops, please simply leave a comment on this post and I’ll include you in my Obliteride emails.  Wouldn’t it be awesome for our team to reach the $100,000 mark with the 2016 ride?!  I can’t wait!  Here’s another fun video to give your more info on how to get involved in Obliteride.

This year is drawing to a close and you may be considering where to give your remaining 2015 donations.  While it isn’t yet time to fundraise again for Obliteride, you can still give to amazing cancer research at Fred Hutch.  One specific way is to support Dr. Marie Bleakley’s work.  She has been one of Allistaire’s primary bone marrow transplant (BMT) doctors at Fred Hutch for the past several years.  She is the BMT doc who is directing Allistaire’s upcoming (hoped for) transplant.  Like most of Allistaire’s doctors, not only does she do an incredible job clinically caring for patients, but she does amazing research.  One focus of her research is TCRs (T-cell Receptor T-cells).  You will remember that this is the sort of immunotherapy Allistaire received with her WT1 T-cells.  In the HA-1 T-cell immunotherapy that Dr. Bleakley is designing there are specific matching and mismatching requirements of the donor and patient which on one hand limit their applicability to a wide range of patients, on the other hand, they are not limited solely to patients with AML but could benefit patients with a variety of types of ALL (Acute Lymphoid Leukemia) and Lymphoma as well, thus expanding their impact.  Dr. Bleakley says that, “There are actually numerous targets like HA-1 and different targets will work for different patient-donor pairs. We are trying to build a toolbox of TCRs so that we can ‘type’ the patient and donor and figure out which TCR will work for them.”  This is personalized, targeted, sophisticated beautiful cancer treatment.

Dr. Bleakley has already been awarded a Bio Therapeutic Impact Grant of $682,000 from Alex’s Lemonade Stand (ALS) whose vast majority of funding goes directly to pediatric cancer research. I am told that 85 cents of every dollar donated goes to program and research grants with the vast majority of that going to the research end. Their program grants go to family’s to provide one lifetime grant of about $1,400 which we ourselves received two years ago in the form of plane tickets home for Allistaire and I.  Dr. Bleakley is able through Alex’s Lemonade Stand to raise up to an additional $25,000 in donations through the end of 2015. For every dollar up to $25,000, ALS will match one to one. So in total she could raise $50,000 additional to go toward her research.

This is an incredible opportunity to fast-track her research in the lab to actual patients.  The next step for her research is to take what they have been doing in the lab and bring it to a GMP (Good Manufacturing Process) lab. This independent lab would, with the aid of her research assistants, recreate their work in order to determine the safety and quality of the product they say they are producing. She said it’s like a dress rehearsal for the real process in which they would prepare the cell product for the patient. The information is taken and included in an IND (Investigational New Drug) Application for the FDA to approve. Once approved, they can then move forward to offering an actual clinical trial to patients. Basically they are at the point of taking their research in the laboratory and offering it as treatment to patients – that means an open door for patients with leukemia and lymphoma!  An open door!  You could help open that door.  To learn more about her research click HERE.  To donate and have your dollars matched one to one up to the goal of $25,000, click HERE.

You know what…At last count, Allistaire’s cancer treatment has cost just shy of 8 million dollars.  That’s more money than all riders have raised in total over the three years of Obliteride.  That is a crazy, mind-blowing number!  My jaw drops every time I think of that number.  Wouldn’t it be WAY COOLER if we could invest in research upfront that would reduce the cost of treatment, reduce the suffering, reduce the incredible investment of time of Allistaire’s life and our family’s lives fighting this fight?  When we put money upfront to accelerate research, we open more doors!  What if we didn’t have to rely on chemotherapy that isn’t targeted and takes down hearts and lungs and kidneys and livers and ovaries with the cancer cells.  What if there was a way to deliver radiation so that it only killed tumors and not brains.  What if surgeons could “see” exactly where tumor cells stopped and healthy cells started, getting all the cancer and sparing the rest? Wouldn’t it just be mind blowiningly awesome to use the incredibly complex, beautiful immune system you already have in your body to effectively and totally wipe out every last cancer cell so that “relapse,” is word never again uttered!  When we put our money and effort into research, it isn’t just one patient that is benefited.  Who can know how many people will be blessed by each step forward in cancer research.  And this is a world-wide endeavor!  Do you know that amazing minds are at work all over this earth trying to untangle the mysteries of cancer?!  Israel, Germany, China, Italy…What is learned here carries value across the world and their efforts likewise bless us!  Do you know that Fred Hutch has a cancer treatment clinic in Uganda?

As I have said many times, there are many worthy places to give of your time and money, many struggles on this earth that deserve and need our attention.  It just so happens that cancer came barreling into my life and so it does for many, many of us.  Cancer will touch us all, if not directly in our flesh, then most certainly in that of someone dear to us.  One in three women will get cancer in their lifetimes as will one in two men.  Thank you for the great swelling of your compassionate hearts that listened and responded in generosity and love.  May you find many open doors!!!

As for our little bright love, Allistaire Kieron Anderson, well, she thrives, she runs, she hops, she laughs silly little giddy laughs and she told me today that the numbness in her face is finally gone.  She looks incredibly good.  Only every now and then can I detect that her right eye is slightly off.  Yesterday she had a bone marrow test and today she had her PET/CT.  We should know results soon.  Hopefully the general trajectory going forward is one more round of chemo which will include Decitabine and Mylotarg again, though likely only one or two doses of Mylotarg this time instead of three.  Then, God willing, she will have her transplant.

We’ve been at this point before.  I am no fool to believe the road ahead is necessarily clear of barricades.  It as though she walks through a field replete with land mines. To get across to the other side will take a miracle, so fraught with danger is the road ahead.  Even yesterday, she had an echocardiogram which reported out an Ejection Fraction of 34 versus 45 last time.  I don’t know how the BMT doctors will interpret this.  The cardiologists say her heart function looks the same as it has on the last two echos despite variance in the numbers.  Thankfully her cardiac MRI showed no scarring and affirmed great improvement in her heart.  Going forward with chemo always opens the door to infections.  Two and a half weeks ago she went inpatient due to an infection and the next day she had a separate issue with an extreme rise in her liver function numbers we finally concluded was due to her anti-fungal, posaconazole.  Her ALT and AST were 1,156 and 1,450 respectively, the normal high being 40.  It has been imperative to get these numbers down and get her liver happy again as Mylotarg’s one direct toxicity can be to the liver both in the setting of when it’s given and in transplant.  Just getting to transplant is an incredible undertaking, then there’s the transplant process itself which holds many extreme dangers.  If you get past all of that, you still have to contend with the possibility of GVHD and relapse.  Thank you Lord that you have used these past four years to help me learn more and more how to walk day by day.

To learn more about the fascinating history and endeavors of Fred Hutchinson Cancer Research Center, click HERE

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Long Shot

Standard

0809151929I slow the car heading down the hill on 65th, allowing a mom and her two children to cross the road.  Blonde curls bounced and flounced as the little girl, about two, followed her mom casting glances back at me.  Without intention my brain delivered up the thought, “maybe that’s what Allistaire would have looked like, alive, out thriving in the world, hair growing toward shoulders.” Immediately I slam the gate close and fix my attention on getting back to the hospital in time for the end of Allistaire’s nap.

It felt as if Monday was a day of dividing, a narrowing once again of the path, splitting the road down into two opposing directions.  The morning began with the news that the cardiac anesthesiologist may have to use Milrinone during the sedation which would mean recovery in the ICU and a hoped for wean back off Milrinone.  Both words “ICU” and “Milrinone” evoke heavy, deep terror.  Ugh.  Okay.  Okay.  Acclimate.  Accept.  New norm.  The bigger issue though was what the results of the Brain MRI, PET/CT and bone marrow test would reveal.  Again there was the impending sense of coming down to the end of things.  Yet in the midst of this, strange rest to accept what would come.

For three long hours Sten and I sat out on the patio outside of Starbucks, waiting for the pager to alert us that the time had come to take the next step forward on this journey.  The cardiac anesthesiologist was pleased with how the sedation had gone and had indeed used a combination of Dopamine and Milrinone to keep Allistaire’s blood pressure from spiraling down.  She was recovering in the ICU with the plan to cut the Milrinone dose by half in 6 hours and off completely in another 6.  Allistaire herself was still coming out of the effects of anesthesia and was in the angry phase, yelling bitterly “It’s not fair.  I hate it here.  I want to be in my regular room.”  She beat her fists on the bed and slammed Doggie down over and over.  Such strange words to hear from her, evidence that Allistaire is growing up, no longer a naive little child but starting to sense a yearning for justice and rightness in the world.  It hurt my heart.

As soon as it was clear Allistaire was fine, my attention was powerfully pulled to the fact that it had been hours since the end of the PET/CT and surely by now someone somewhere must know something of what was happening inside Allistaire’s flesh.  I asked the ICU nurse to page Dr. Leger, the attending oncologist, asking for results.  She’d be right down.  My heart began to pound, standing on that ledge overwhelmed by the vast sense of deep space in which I may be about to fall.  The news was good.  The news was bad.  “Her cancer looks better,” she said.  Relief but not nearly enough.  The PET measures the metabolic activity of the areas of cancer with a unit of measurement called SUV (Standard Uptake Values).  The body is deprived of sugar for about 12 hours before the scan and then an injection of glucose is allowed to circulate the body for an hour before the scan is taken.  The more metabolically active, the brighter the area of the body on the scan.  Results less than 3 and even more so less than 2 are considered to most likely be non-cancerous.  All of the chloromas (leukemic tumors) in Allistaire’s body had reduced to less than a value of 2 with the exception of one spot which was 2.3.  The mass in Allistaire’s sinus had reduced to about 6 which is till quite “avid” as they say.  So while it is great that Allistaire had a good response to the chemo/antibody, would it be enough to move forward?  What would forward mean?

The bad news was that there was also a patch of pneumonia on her lower right lobe of her lung.  An active infection.  While Allistaire has had absolutely no respiratory symptoms nor fevers, we all assumed an active infection was yet another slammed door to proceeding with the T-cells.  In the past week it had come to light that Allistaire’s cardiac function was also too poor to qualify for the WT1 trial.  Apparently deep in the details of the protocol was the requirement of an ejection fraction over 40, a currently impossible bar and one that could take months and months to achieve if ever it could.  The problems just kept piling up, seeming to bar the way forward with the T-cells:  poor cardiac function, active infection, Grade 3 toxicity due to ileus in addition to a lack of count (Neutrophil and platelet) recovery we had always known would be an issue.  With the door to T-cells closed the only option would be more chemo but there’s no way to give her more chemo right now with an active infection brewing.  Giving more chemo would just suppress her white blood cells all over again and allow the pneumonia to take over.  She would need time for her body’s recovering immune system to fight the infection which also meant time for the cancer to grow back and spread. Everywhere my mind turned felt like slammed doors.  Sten and I pressed our bodies together in long silent hugs, my legs weak underneath me, threatening to give way.

I went to sleep crying.  I woke twice to dreams of being chased, hunted down.  I woke for long hours in the early morning, hot tears and the slow realization that we might just really be done.  We might need to take her home soon.  Oh sure, it wouldn’t be right away.  They wouldn’t kick us out while she has an ileus and an infection.  They won’t just let her starve to death or intentionally let an infection overtake her.  No, I knew they would continue to treat these issues.  Home would only be an option once these were past.  And for the first time, “quality of life,” was a term I was willing to hold in the forefront of my mind.  Maybe “going down in flames,” wasn’t the only option.  Maybe it would be better to let it happen slowly.

“Oh Lord, oh God, have mercy!  Look down on these woes and make a way through, please Father.”  I called out to the Lord intent on yielding to His Godhood – His ways being beyond my comprehension, but still calling out for mercy.  The Israelites came to mind, pinned between the onslaught of the Egyptians and that vast body of the Red Sea.  There was nowhere to turn, no seeming avenue of escape.  And then the Lord did the incomprehensible.  He parted the waters of the sea and they walked through on dry land.  “Father, part the waters, make a way through,” I cried out.

JoMarie, Solveig and Jo drove away Tuesday morning.  When it became clear that nothing big would be discussed that day or in the next few, Sten and I packed up the Suburban and I watched him drive away.  Always the question hangs of what life will look like the next time we are together.

I returned to the hospital and found a very upset Allistaire in her room.  She was so sad to have Daddy leave and her tummy was really hurting and the pain medicine didn’t seem to help.  Nevertheless we would get up and make our loops around the Unit.  Dr. Leger came toward us and slipped a paper in my hand – the Flow Cytometry results.  No detectable cancer in her marrow.  So great but still my heart slumped knowing the victory over cancer might still be defeated by these wretched side-effects of the very treatment that was actually succeeding at doing away with her cancer cells.  Wouldn’t it be amazing if we found treatments for cancer that only killed the cancer cells?  Wouldn’t it be phenomenal if we didn’t have to poison the kidneys and liver, kill muscle cells in the heart, destroy brain cells, crush hopes of future children by annihilating ovaries?  What is just so blasted frustrating is that there really are treatments that might be able to cure Allistaire from cancer but the very treatment has been so ravaging that she is barred from the final blow to her cancer.  The thought that there is a possible amazing treatment within hand’s reach but may never be attainable because chemo tore her heart, shocked the nerves of her gut to stop working, wiped out the white blood cells that could have defended her against pneumonia and battered her marrow so relentlessly that her life-giving blood cells can hardly rise back up – well it’s simply intolerable, maddening, staggeringly sad.

Dr. Leger told me she would be by shortly to talk with me.  She told me that she’d finally had the chance to sit down with the radiologist and carefully go over all the images.  The mass in her sinus, while still metabolically active as cancer, was actually substantially reduced in size!  So wonderful.  And then, I could not believe my ears, shook my head in wondrous disbelief.  “If nothing gets worse, Dr. Egan plans to go to the IRB on Monday and ask for exceptions to be made for Allistaire.  He’s hoping for a 48 hour turn around and plans to infuse the T-cells on Thursday.”  WHAT????  Apparently Dr. Egan is optimistic that the IRB (Internal Review Board) will approve the exceptions he is asking for on Allistaire’s behalf and expects to have approval in time to give her the T-cells on Thursday.  Wide eyes and jaw dropped in shock and smile.  Apparently the protocol does not count an active infection as an exclusion so her pneumonia will not exclude her.  Even so, she has no symptoms, is being treated with both powerful antibiotics and antifungal drugs and has a rising neutrophil count to rid her of the infection.  But he will be asking for exclusions for her poor cardiac function, lack of sufficient count recovery and the Grade 3 Toxicity resulting from the ileus and thus need for TPN.  I just can hardly take it in.  Monday evening I was practically begging for those T-cells, those cells made just for Allistaire, those cells that may be her last hope, perhaps insufficient to cure, but maybe just to buy her some time for at least more life and maybe for the next step in treatment.

It’s a long shot.  But then again, I look back not just over months but years and I see God’s hand toppling walls, making a way through when there seemed none, holding cancer at bay when it seemed unstoppable, orchestrating so very many circumstances to care for my child.  So many seeming closed doors have been opened.  Man, I have no clue what the future holds.  This crazy life has shown me over and over that you don’t even know how life can change in a flash from morning to night.  I am humbled by God’s gracious hand and I am humbled by the relentless hearts of these doctors who do not stop working to try to figure out how they can help Allistaire.  They rewrote the protocol for this trial last fall to reduce the weight requirement in order to allow young children like Allistaire to have access to these cells.  Dr. Egan went through an extensive process to make it possible for children to actually be given the infusion of cells at Seattle Children’s as before it was only set up for adults to get them at the University of Washington.  Dr. Cooper and Dr. Egan have sent so many emails and had so many conversations trying to strategize on how to open the way for Allistaire.  Even on his vacation, Dr. Cooper has continued to ponder how to care for my sweet girl.  Dr. Leger, the attending doctor, is working in collaboration with Dr. Law and the rest of the heart failure team trying to get Allistaire’s heart in the best possible place.  She connects with the GI team to consider how we might bring about an end of this ileus and converses with the Infectious Disease folks on what to do about her pneumonia.  And then there is our sweet Dr. Tarlock, the very first oncologist we ever encountered, she’s always there in the backdrop, coordinating the details, asking questions, probing for answers.  There are the scores and scores of nurses who draw labs, carefully entering Allistaire’s line many times every day, every time an opportunity for infection.  They put up her meds on the pumps and listen to her little heart, listen for bowel tones, feels for pulses and warmth of extremities.  The CNAs change linens, bring the scale to get her daily weight, weigh diapers and measure throw up all so we can track her fluid intake and output.  They come every four hours to check her blood pressure, temperature and oxygen saturation.  Mohammed and Bonnie are just two of the folks who clean our room and tediously clean the floors, all to rid the Unit of dangers like viruses and bacteria.  Residents like Whitney comb the details of the plan of care, putting in orders, looking for and interpreting test results.  Pharmacists problem solve medication interactions, proper dosing and work with the nutritionists to get just the right combination of electrolytes in her TPN.  Amazing radiologists read scans and radiology techs like our dear Jamie make getting a CT fun and produce a good image.  Dr. Geiduscheck, the cardiac anesthesiologist, carefully reviews Allistaire’s previous sedations and considers a plan and a backup plan to get her through these long scans and bone marrow test.  The pathologist look down at her marrow through the microscope, arrange the Flow Cytometry test and her chromosomes to use FISH probes to look for her MLL mutation.  Sweet Melissa arrives with a wheelchair to transport us from place to place on days with procedures and scans.  There’s also Rosalie the Art Therpaist, Betsie the Music Therapist, Karen and Jeremey on the PAC (Pediatric Advanced Care) Team, Fred and Megan our social workers, and Carrie our Financial Counselor.  This is a crazy long list and I know I am leaving out so many folks whose efforts God has used to sustain Allistaire’s life.  I am gloriously indebted to so many wonderful people, people who don’t just do their job well, but whose hearts and voices cheer us on, wanting and hoping for the best, for a way through.

Today Allistaire was bright, full of joy, dancing in her bed.  She had a little smear of poop in her diaper last night.  I told her we would have a Poop Party when she finally started pooping again.  She told me with the most gleeful voice, “Mommy, I had gas!”  Yay!  What wonderful things!  Callie, the child life specialist came yesterday and played Model Magic with Allistaire much to Allistaire’s great joy.  Today Sierra, the creative writing lady, came to listen to Allistaire tell stories and record them on paper.  Somedays I just feel so overwhelmed with how good our life really is, because it really is just SO full!  It is so radically different from my vision of what I would choose but the truth is it is simply bursting with wonderful people.

It’s a crazy long shot, these T-cells.  Who knows?  They may utterly fail and the end may soon come. But I choose to link fear to wonder, terror to hope, threat of death to a God who overcame death.  There was an Obliteride team with cool blue jerseys, Adaptive Biotechnologies.  I had to look them up. Turns out they do really cool stuff (I’ll include a video below) and started around a cafeteria table at Fred Hutch.  In my search through their website I came upon a video which is the most helpful tool I have found yet to understanding these T-cells that are Allistaire’s hope.  Watch the video.  Don’t skip it.  It is worth every second of your time.  Let your mind be blown, your smile be broad, as you ponder the magnificent intricacies of your flesh, of actions being taken on your behalf a hundred thousand times a day without you even having to ask. My face could not contain the bursting smile of my heart as I witnessed just one wee bit of God’s gorgeous creation.  The T-cells declare the wonder of my God, His wild beauty, His grace toward us.  I choose to link my terror of Allistaire’s death with this God who makes the T-cell.  I choose to yield to Him.  I choose to worship the God of my immune system as the God who gets to choose the path of my life, who chooses Allistaire’s path.  Not only do the sweep of stars above proclaim His glory, but so too here, deep within us, mysteries, wonders, lifetimes worth of exploration and they will continue to elude and excite with their complexity.

(Quick update: as of last night Allistaire had numerous toots and seven poopy diapers!  She ate an entire bag of popcorn yesterday and has had no pain in her tummy for a day, no pain meds for almost 24 hours and hasn’t thrown up since Wednesday morning.  It looks like this ileus may be over and just the need for a slow acclimation back to food and wean off TPN before us!!!!!)

Amazing video on How T-cells Work

Cool video on the Adaptive Immune System and technological advances to understand and harness it!IMG_0757 IMG_0746 IMG_0743 IMG_0742 IMG_0737