Facets of Broken

Standard

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.

 

Tomato

Standard

You held up that one half of one grape tomato on your fork, little hand shaking, little voice shaking, asking, pleading whether or not you had to eat it. Yes. Yes you have to eat it! Demand in my voice. Declaration. Staking a claim, thrusting that stake into the flesh of the earth. “You have a future!” I am your mother and I am claiming a future for you, I am declaring you a child who will live…if I have anything to do with it. Eat your vegetables!

But I had nothing to do with it. That was your last real meal and I forced you to eat a tomato. I will never forget your face, sweet eyes full of terror and desperation to somehow get out of eating that wretched tomato. You wanted pizza. But I had to say No. No. No, because the task at hand was to starve your cells of glucose all those starches of crust would provide. No, your cells must wither and yearn until the next day’s glucose injection for the PET scan when they would slurp up the energy giving glucose, powering their metabolic processes, the glow of their fervor lighting up on the screen. Those most hungry but with no business living would show up in yellows and oranges and reds, evidences of the throbbing, tenacious life of cancer, cell by cell by cell.

One year ago on a Monday night in Seattle, in our sanctuary away from home, in our Ron Don apartment, I could never have imagined you were eating your last meal. I could never have imagined that just two weeks later you would no longer speak, the ferocious cancer cells eating away at your brain, forever closing your mouth, forever silencing you dear little voice. As I turned you on your side to clean you up, the blades of your hip bones cuts sharp angles, your legs so thin, your frail left arm jutting up into the air as the pain coursed through you at even my most gentle touch.

I regret that tomato. I so wish I could go back to that night and say, no, no, sweet girl. You do not have to eat the tomato.

I sit in the light of a single lamp. The rain falling against the windows. Alone. No one left in this vast house but me. Allistaire dead. Sten has left. Half of Solveig.

The rain has turned to ice and beats against the windows. A flash of lightning.  Thunder.

The storm passes over.  Quiet except for the faint ring of the wind chimes.  A sound present before these children.  A child gone, a husband gone, a child absent.  Still the same sweet tones move with the wind in the night air.

Allistaire’s Memorial Service Details – Final Update!

Standard

084Allistaire

(All are welcome to attend either or both services)

Memorial Worship Service

(For the purpose of worshiping and submitting our lives to Jesus Christ as Lord)

Saturday, June 11th @ 10:30am

Petra Academy (4720 Classical Way, Bozeman, MT 59718)PetraClosePano_edit_edited-2-e1439256951353*Seating is limited.  If you’re coming from out-of-town, please be sure to arrive early to ensure a seat.  The service will be recorded and a link to the recording will be provided at some future point.  There is no child care provided.

*For those who don’t wish to attend this morning Memorial Worship Service, you are welcome to join Sten on a hike up the “M” trail.  Meet at the trailhead @9:30am.  (Directions:  Follow Rouse Ave. north (becomes Bridger Canyon Rd.).Turn left into the signed trailhead parking lot on left)

 

Celebration of Life Service

(A time to focus on Allistaire’s life)

Saturday, June 11th @ 6:30pm (MST)

The Commons (1794 Baxter Ln E, Bozeman, MT 59718)Logo-Dark-2

  • A dessert reception (cupcakes, ice cream sandwiches and coffee) will follow the service
  • Childcare for all ages WILL be available, including a live video feed into the childcare rooms for parents who want to stay with their children
  • Watch the Service LIVE, go to this LIVE STEAM LINK.  You will need to register for a Free Live Stream Account ahead of time to watch (we recommend signing up Friday or Saturday morning so you won’t be delayed in watching the 6:30 service)

Feel free to wear whatever you feel comfortable wearing, though our one request is that if possible, please weary cheery colors.  Allistaire was a girl who delighted in the full spectrum of the rainbow and it would be fun for our many bodies to reflect that joy as we gather together in honor of her life. Here are a few examples, the first being an outfit designed by Allistaire on her Toca Boca Tailor App (you don’t have to go quite this wild, but you get the picture):
IMG_0455

FullSizeRender-2

Awesome Gift Basket Raffle

Sten, Solveig and I have pulled together a whole load of happy (new) items that were things that brought Allistaire delight. We are putting these together in a super fun gift basket which will be raffled off at the reception.  Raffle tickets are $1 each (so bring your cash) and all proceeds will go to The Bozeman 3.

Bozeman Three_IMG_4719_4x6_300ppiThe Bozeman 3 is a local non-profit that supports families in Gallatin County whose child has been diagnosed with cancer.  The Bozeman 3 arose out of a unique bond between three families forged in their shared experience of fighting for the lives of their children diagnosed with pediatric cancer, far from the support and beauty of their homes in the Gallatin Valley of Montana. They met in the hallways of Seattle Children’s Hospital’s Oncology Unit in early 2012. While each child faced a different form of cancer, these children, along with their parents, possessed a resolve to fight. (Our family is one of these original three, along with those of Stellablue Woods and Caden Shrauger pictured above with Allistaire)

The Bozeman 3 financially supports local families whose child has cancer, provides peer support and helps fund cancer research.

Many of the items included in the gift basket (totalling over $200) are pictured below:
IMG_1061

 

We Could Use Your Help!

We have been absolutely overwhelmed with an outpouring of love and support, not only in the past four and a half years, but again in this exceptionally hard time in the wake of actually losing Allistaire.  For those who are still yearning to help, below are a number of key ways we would graciously appreciate assistance:

  • We asked for 300 cupcakes and have had far more offered – thank you again for your outpouring of kindness and love.  At this point we no longer need any additional cupcakes.  For those who have already offered, keep Rhonda Mattson’s contact handy if you have any questions (rhondamattson33@yahoo.com (406) 451-6571).  And remember, ideally, we would like you to deliver your cupcakes to the main central doors at The Commons by 6:15pm on the day of the  Celebration of Life Service, June 11th. A volunteer will greet you at the door to receive your cupcakes.  (Below is an example of the look for the cupcakes we’re going for)FICC3705

 

  • We have created a “Wish List” on Amazon of items we could use help purchasing including plates, cups, napkins and sprinkles (to be applied to the ice cream sandwiches).  WOW!!!!  All the needed items have already been purchased less than 12 hours after posting the Amazon Link, so I have now removed it. Thank you folks!!!!!
  • The meal sign-up has been updated to reflect request for group dinners for a few days prior and after the memorial services.  Provision of meals has been an incredible help and we so appreciate all the tasty food!!!  To sign up to bring meals click HERE.

 

***A note to out-of-town folks: The weather in Bozeman can vary wildly with temperatures down into the 30s at night, potentially, all the way up into the 80s some days.  I would highly advise paying attention to weather as you pack and always bring a warm coat.

Thank you to so many folks who have shown their love to me personally and to our family in this past month plus.  Thank you for your cards and messages of condolence and how knowing Allistaire has impacted your life, for texts and phone calls, gifts, meals, offers to help and prayers.  Please know that all of these have been gratefully received though my ability to thank you is radically diminished and delayed.

The truth is this past near month since Allistaire died, has been a strange, mixed time which I hope to write in reflection upon more down the road.  Part of our reality is that I have been very busy with my trip back to Seattle to clear out our Ron Don apartment and say thank you and goodbye to folks and all of the work necessary to put together these two memorial services in honor of Allistaire.  In the midst of this I have two dear friends whose children have received the most awful of news – that like Allistaire, their disease has returned and grown and there is now no more treatment available to them.  I have a third friend whose child could soon be in the same position, not to mention my two friends who have recently lost their sweet girls.  My heart is still very much with these friends and if I have to prioritize my limited time and energy, it will go toward them, despite my inability to give to them in nearly the degree I desire.  I have also been able to spend time cleaning and organizing spaces in our home long neglected in my absence and enjoying being outside doing refreshing physical labor like mowing the lawn and hauling limbs that came crashing down under the weight of the fantastic snow storm a few weeks ago.

Mostly I have loved the quiet.  There are few sounds but that of bird chatter and wind in the fir and aspen trees.  With my brother-in-law, Jens’, idea of his spirit animal being a grizzly bear in mind, we have chosen the Mountain Blue Bird to be a tangible reminder of our bright blue-eyed little girl.  Mountain blue birds abound here and a family has taken up residence in the bird house across our driveway.  Throughout the morning and day, I can often look out my kitchen window and see the bright blue of sky in the form of bird sitting on the fence rail.  I of course don’t actually need a reminder of Allistaire to remember her – she is ever on my heart, in my thoughts and scattered throughout my dreams at night, but it is uniquely lovely to observe a creature of such beauty and loft – a creature that can flit about and sail up into the sky.  It helps my heart to not only grieve the loss of Allistaire in my life, but imagine in the smallest way, the joy of the life she now lives.

I look forward, with joy, to seeing many of your faces old and new, who have so loved our Allistaire and cared for our family.birdmountainbluebirdmale

 

 

 

Bouey

Standard

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

Standard

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

Standard

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

Standard


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
IMG_0472IMG_0480IMG_0486IMG_0489IMG_0499IMG_0501IMG_0503IMG_0506IMG_0509IMG_0516IMG_0517IMG_0520IMG_0521IMG_0525IMG_0526IMG_0527IMG_0535IMG_0537IMG_0538IMG_0533IMG_0534IMG_0531IMG_0541IMG_0562IMG_0561IMG_0566IMG_0565IMG_0555




Come to the End

Standard

IMG_0461IMG_0447IMG_0457The cursor blinks.  Waiting. Waiting for the words to come, to extract from the blur, to distill the thunder and wailing silence.

We are those people.  We have become strangers from even those who have known this road with us most intimately.  She is not yet gone but the memories, they flash in and burn.   Every step igniting shards of pain.  Beauty and joy, that with the awareness of their loss, pierces rather than delights.  Thoughts, uninvited barrage, come sailing past, slicing, blunt force.  I was teaching her the names of plants and she would yell out their names as we drove about – forsythia, I see forsythia, she exclaims. Red-tip Photinia gets blurted out over and over.  And there it is, a brutal mingling of what once brought joy and proclaimed life and growth is transferred into the category of no more and then the gaping expanse of emptiness where more names of plants were supposed to dwell.  But I wanted to teach her to crouch low and delight in the delicacies of moss, of tender fern, of trickling stream, to watch the light stream through trees, to stop and listen, to soak in life, to learn the secret of the bounty observation brings…

We have had rough times before, really really rough times.  There have distinct situations in which her life could have easily veered toward death, it was right there, standing at the threshold but never had it entered in.  To look at her is disorienting, to consider the severity of the situation keeps getting rejected and spit out over and over.  Dr. Cooper called in early evening.  I told him of the second guessing our decision that had already come, of the disbelief that she really is being over taken by her cancer, that there really is nothing to stop it this time.  I ask him again, are you sure, totally sure there is nothing for her, nothing?  Nothing.  There is nothing left.

This morning I thought, maybe there is something out there in the world, some new and wild way to tackle her beast, some new angle that can catch it unawares and strangle it at long last, extinguishing its mindless assault.  But no.  There are only the same grooved paths.  Therapy, primarily chemo, all to get to a transplant and she just had a transplant.  She just had THE transplant, the no holds-bar transplant, a full-conditioning volley of weaponry – if that didn’t work, there is at present nothing more under the sun that can cure.  And so the question rises, can we give her something to hold her, to simply keep her going?  But to what end?  And it’s not like this doesn’t come at its own cost.  The one possible goal was a CD123 CAR T-cell trial that is still in the works at CHOP (Children’s Hospital of Philadelphia), but it is months and months out.  And with Allistaire’s current heart function she wouldn’t qualify anyway.  And perhaps more than anything, the startling speed of this cancer’s progression makes nearly any novel therapy too late.  Her kidneys are suffering with a steadily rising creatinine level.  Her potassium and uric acid or rising due to tumor lysis.  And this rise in potassium, the unbalancing of electrolytes, could at any moment cause cardiac arrest.

Before we knew it, without intending to and without being able to yet utter the words out loud, we began to discuss what it will look like for her to die.  Does kidney failure hurt?  No, it would be peaceful.  As would her heart simply stopping, peaceful.  What a strange thing to hope for your child.  I do not want chloromas to overtake her body – they cause incredible pain and deformity.  No, it seems most compassionate to make way for some other finality.  I do not want her to bleed out.  We must keep giving her platelets.  But red blood?  It may come to the point that we simply don’t give her any more red blood and she will grow more and more tired and sleep and never wake up.

I cannot believe I am having to have this discussion.  I cannot believe the words entering my ears or coming from my tongue.  It sounds like logistics, some planning committee.  Hospice will meet you on Monday at noon.  PAC Team (Pediatric Advanced Care Team) will do this, Dr. Cooper will check on this…but there is this little girl, the nucleus of all these efforts, these considerations.  And while it all might sound callous and aloof, distant, I am confident of the sincere care for Allistaire in that room, especially that of Dr. Cooper and Dr. Bleakley, two doctors who have intimately walked this road with us, who have thought long and hard over Allistaire.  They are dear to me and I trust them.  I trust them because the are incredible brilliant people who have walked this road with families for many years, who understand the disease far, far more than most and who have known Allistaire as a real girl, not a med rec number, not a PET scan result or Flow Cytometry percentage.  And so with what very little time we have left with our girl, I will not go running after obscure options.  We have chosen to rest in the expertise of our doctors who are connected nationally and internationally with fellow physicians also working on AML.  They are a gift of great worth to us.  They honor us and honor Allistaire in their enduring work to care for children with cancer.

I am already incredibly tired.  I don’t want to leave her side.  I feel the tiny bones in her hands and the light passing across the tiny little peach-fuzz hairs on her cheeks, the long dark lashes and puffy eyelids.  I listen to her breathing and rub the warmth of her back, the delicate blades of bone.  And it all just hurts so bad.  Tonight is Friday night.  It’s always been Friday night pizza night and a movie. Sten and Solveig honor that tradition in Montana and we here in Seattle.  But tonight?  What is tonight?  Is it my last Friday night with Allistaire?  I gag at the thought. I long to throw up, to some how clamp my hands over my ears, to press my eyes closed tight and somehow make it all go away.  Can I just go back to a week ago?  Can I just undo this awful week?  Can we please not take this path?  I want to scream and scream and scream until my voice is gone.

When we sat with Allistaire on her bed and told her that we had met with the doctors and there was no medicine left, that she would die, we asked if there was anything she wanted to do.  “I want to go home,” she said.  And while we feel our resources for this situation are best here, we are taking her home for two days.  Two last days at home in Montana.  Time for the four of us to dwell in that home one last time altogether.  Time for our family to gather.  I don’t know how our hearts will bear up under it.  But we must live out each moment, each minute that amasses to become an hour, and hours days.  Yet we may really be down to days and I can’t stand the thought of it.  My body just shakes, rejecting that the child I gave life to I have to at last lay down and walk away from.

I must go to sleep.  In the morning I will pack for this brief visit home and she will get a transfusion of platelets and red blood to tide her over.

Thank you for your many messages of sorrow and love.  Thank you for your prayers.  Many of you have expressed a desire to help.  First please understand that our time with Allistaire is so short, we will really be keeping to ourselves and our immediate family, a few close friends.  At this point in time we ask that you don’t ask to come visit unless we have already communicated with you.  Please know this is no reflection on you, rather a need to be realistic with our finite time and emotional resource.

Another way to demonstrate your angst toward cancer, your sorrow over the loss of Allistaire’s fiesty bright sweet spirit in this world, your support of our family, is to give to OBLITERIDE.  I cannot tell you how brutal it was this morning to hear of amazing research underway in the lab that is no where near being ready for Allistaire.  While I rejoice at the advance of cancer research, it is too wickedly slow!  What heartbreak to know that while cures are underway, Allistaire’s body will have already ceased.  Please consider honoring Allistaire’s life by supporting me in funding cancer research at Fred Hutchinson Cancer Research Center through Obliteride.

Click HERE to donate.

“Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.

Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen.” (1 Peter 5:8-11)

Blind Sided

Standard


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.

 

Range

Standard

IMG_0335A time between times.  A place between places.  The Bridgers fill the expanse, stretching miles and miles wide before me, foothills reaching out toward the greening valley floor, ridges and draws white with snow echoing lazy clouds above in that bluebird sky.

I’ve already hugged and kissed Sten and Solveig goodbye.  I have yet to return to Allistaire, to take in her giggling little voice, to feel the smooth warmth of her still bald head.

Six days at home.  A home that is home and yet stranger, a home that holds my heart, that taunts with its wonders of ordinary life, pulling the warm clothes from the dryer, matching socks for Sten and Solveig, clothes that encircle the bodies of the other half of my family.  Washing dishes looking out the window at the Spanish Peaks, passing the coats in the mud room where wood smoke still clings its heady scent.  Waking to the rush of wind in trees, bird song and the looming form of Sten still asleep next to me.  Lying down at the end of day with the glitter of stars, from horizon to horizon, faint and bright, haze of star cluster, fiery white bright of planet.  Hills turning from doe to fresh green, drawing the deer in dozens, their forms scattered on the grassy slopes morning and evening, their eyes luminous in darkness of night.  Waving to my mother-in-law as I drive down Bridger Canyon Road and she drives up.  Seeing Jess on the sidewalk with my little nephew, Per, and yes, I should like very much to walk over to the Emerson with you two to see your friend Jen’s new shop.  Hiking the “M” with Hope, watching the pink swath of morning light overtake shadow of mountain and consume the valley with brilliance.  Looking into Jo’s eyes swimming with tears, heaving sorrow for one entire year gone without her beloved, Jens fallen on Beehive Basin a day shy of a year ago.  Hugging Solveig’s glossy brown hair to my chest, joyful for days at home with her, mourning that I must leave her once again.

Twenty-five of thirty-six months spent away from home.  Not only must I leave yet again, but what I’m returning to looms up like oppressive shadows, a chill rushing in, clouds blocking sunlight.  On Tuesday, April 12th, Allistaire will once again go through numerous tests looking for her cancer.  On Day+91 Post Transplant Allistaire will have a PET/CT, Brain MRI, high-resolution chest CT, bone marrow biopsy, lumbar puncture and skin biopsy (to check for GVHD).  The bone marrow will be tested by Flow Cytometry, Cytogenetics, Pathology and for Chimerisms (percentage of donor vs. patient/Allistaire’s old diseased marrow).  In her last round of testing, I was originally told all nine of nine tests detected NO cancer.  A week later, a second review of the PET/CT and Brain MRI concluded that there appeared to be some tissue changes in the area of her right sinus maxillary exactly where there had been disease before.  The changes were not significant enough to allow the area to be biopsied, but could either represent leukemia or her cold/possible sinus infection.  On the 12th, the images will reveal the path ahead, toward health, or ongoing battle with sickness.

There have always only ever been two outcomes.  Either she lives or she dies.  Nothing has really changed and yet, I keep smacking up against the brutality of her possible death.  There seems to be no let up, no lull that does not last but a moment.  When Dr. Burrows called to relay that the radiologists did not think it was feasible to biopsy the spot in her sinuses, I tentatively ventured to ask the looming question, what, what do we do if it’s disease?  That very day I had gone to our Financial Counselor at the hospital to get some updated stats.  To date Allistaire has lived 515 inpatient days in the hospital, almost 25% of her life cooped up within those walls fighting for her life.  Sixty percent of her life fighting her nemesis.  This battle has thus far cost $9,625,000.  Nearly 10 million dollars have been expended to destroy a cell, one rogue screwed up cell that threatens to mindlessly swallow her alive.  The very best of all that humanity has to offer has been brought to bear against this disease.  No expense spared, to weapon denied.  And yet…it still may not be enough.

With hesitation I asked about more treatment, pulling that massive number out into the light for Dr. Burrows to face.  She tells me their focus is not on cost but on quality of life, they consider Allistaire’s quality of life and what may be able to extend that life.  She went onto tell me how the world of oncology has changed in the time since she was a fellow, how in those days no one was ever offered a second bone marrow transplant.  If you relapsed after transplant, there was nothing left, you died.  Then in time they began second transplants, but then never if there were circulating peripheral blasts.  But as research allowed for less toxic transplants and greater advances in supportive care, more and more treatment options became possible because patients could endure what was being thrown at them.  She told me that even as short as a year ago a patient like Allistaire with extra-medulllary disease (chloromas), would most likely not have been offered a transplant.  She told me that in all honesty, to be completely blunt, she did not think that Allistaire would survive her transplant.  She thought surely she would die.  As she sat after dictating Allistaire’s Arrival Conference for transplant, she wondered if they were crazy to offer this transplant to Allistaire, what were they doing to her?

“Jai, she’s defied the odds over and over again.”  Yes she has.  She had no complications in transplant with the exception of a small amount of mucositus in her bottom.  She continued to eat, drink and take her meds throughout.  Her heart held, her lungs did not bleed, her liver remained healthy with no VOD, she had no brain hemorrhage, she did not even ever need TPN.  She discharged in record time, in only 22 days, the shortest escape being about 19 days.  So, what will we do if it’s disease?  The answer is unclear, the way forward a fog.  I requested we sequence the genome of her cancer to get some more possible ideas of how we might target her disease.  The answer arrived a week later, that yes, Soheil had approved deep sequencing to be conducted by Foundation One, and specifically their assay, Foundation One Heme.  Here is a bit of explanation from their website:

“FoundationOne Heme is a fully informative genomic profile for hematologic cancers (leukemia, lymphoma and myeloma) and sarcomas, designed to provide physicians with clinically actionable information to guide treatment options for patients based on the genomic profile of their cancer. It is Foundation Medicine’s second commercially available targeted sequencing assay.

FoundationOne Heme uses comprehensive, clinical grade next-generation sequencing (NGS) to assess routine cancer specimens for all genes that are currently known to be somatically altered and unambiguous drivers of oncogenesis in hematologic malignancies and sarcomas. FoundationOne Heme simultaneously detects all classes of genomic alterations, including base pair substitutions, insertions and deletions, copy number alterations and select gene rearrangements in 405 cancer-related genes. In addition to DNA sequencing, FoundationOne Heme employs RNA sequencing across 265 genes to capture a broad range of gene fusions, a type of alteration that is a common driver of hematologic cancers and sarcomas.”

This genomic information on Allistaire’s cancer cells are then cross-matched with clinical trials and possible targeting drugs; all in an attempt to expand her options for treatment.

The sun is lowering in the sky, rays of light skimming horizontal across rock, illuminating the craggy face of Ross Peak.  As my eyes rest on the timeless grandeur and power of rock and light, my mind hones in on these words, “The Lord commanded and it stood fast.”  Psalm 33:9  “This far you may come and no farther, here is where your proud waves halt.” Job 38:11  My life has felt unfathomably tenuous, the thread frayed about to split and everything scattering.  But this is illusion, this is sensation, this is seeming not actuality, this is seeing through eyes of flesh.  And while this fight dwells largely in truest flesh, it is bound to and enveloped in the voice of God, the voice that calls out all the starry host one by one, each by name.  Because of his great power and mighty strength, not one of them is missing.  God my God is God over all, over every star and wave and cell and molecule and whirring atom.  My life is anything but tenuous, it is secure in the Lord, and it is He who determines its boundaries, its dimensions, its qualities of light and color, of texture and fragrance.  He commanded and IT STOOD FAST!  Yes, yes I am absolutely terrified that Allistaire might still have cancer and I know of nothing left to rescue my girl and it makes me feel like my flesh will explode into a million ragged bloody pieces if this beast takes her down.  Being home in the wonder of this beauty and ordinary makes me long to finish this fight all the more, makes me yearn for wholeness of family and relationships, of rhythms of days and seasons.  The changing light on the Bridgers , shadows lengthening, colors of light intensifying – it all taunts and calls to me, the freshness of cool morning air, grasses waving in wind.  But I gather it all up, a heap of longing and I fall down before my Father, handing it over, entrusting, resting.  You are God.  That is what it comes down.  He is God and I will choose over and over and over to take His hand, knowing He holds all the world and its goings ons there.

What results come from Tuesday’s scans…they come from the hand of God, and by the power of His Spirit at work in me, that same power that raised Christ from the dead, I know, come what may He will hold me up.  He will make my heart sing.

Thank you so much to those who have already tangibly supported our fight for Allistaire’s life in giving to support me in Obliteride. If your heart aches with desire for there to be another open door for Allistaire, for your own battle against cancer, for the beloved flesh of your mom, your brother, your dear friend, please consider supporting cancer research at Fred Hutchinson Cancer Research Center.  One-hundred percent of funds donated to Obliteride go directly to accelerate cancer research.

Click HERE to donate to OBLITERIDE and save more lives FASTER!!!IMG_0285 IMG_0298 IMG_0312 IMG_0316 IMG_0323 IMG_0327 IMG_0336 IMG_0349 IMG_0353 IMG_0354 IMG_0360 IMG_0373 IMG_0375 IMG_0382 IMG_0386 IMG_0388 IMG_0392 IMG_0399 IMG_0402 IMG_0403 IMG_0414