Tag Archives: Acute Myeloid Leukemia

Facets of Broken


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.


Lead Bellied Clouds


IMG_0453IMG_0491The dark grey blue of cloud bellies move slowly east, sheets of rain stretching out, connecting sky to earth.  Thunder lumbers and bellows.  Rain hits hard on the roof.  A flash of lightning.  Quiet.  The storm moves on and the sky opens to blue.  To the west, to the south, the sun glints on the Spanish Peaks illuminating their vertical striations of rock and ridge, Beehive bright tucked behind.  Then shrouding of white, thin wisps of rain stranding from grey to light in the evening sun.

More thunder, cracks of power break open overhead, the darkness of more clouds heading this way.

“I don’t know how to do this,” I say to Dr. Cooper with a restrained wail in my voice, “I guess you have to just live each minute.”  There is always the before and after, a thousand points marked off, striating, separating then and now, what was, what is.  Eventually the “what will be,” becomes the “is.”  A hundred thousand test results, countless days and hours and minutes for the heart to beat hard with suffocating thud, anticipating the blade coming against your throat.  The wave rips you off your feet, dark weight pressing down on you, flailing, desperation to right yourself. Gasp of air and crashing wave grinding you down again and again.

Quiet.  Eery, odd, quiet.  Calm.  Flat face.  So this is how this goes.  This is how minutes amass to hours and days, months into years.  So this is how death comes.  This is how the thievery of your child’s bursting life gets stripped away, paint ripping in shreds from boards exposed too long in harsh weather, the slow erosion of flesh, the silent march of invasion.

Dr. Eagan, the PI (principal investigator) of the WT1 T-cell trial said Allistaire’s chloromas just amounted to too much disease to have hope that the T-cells would be successful, at least at this point.  In addition to the 6-7 chloromas in her spine, sternum and pelvis seen on the last PET/CT, four out of two hundred cells tested from her bone marrow aspirate showed Allistaire’s MLL (Multi Lineage Leukemia) mutation according to FISH (Fluorescence in situ hybridization).  The Flow Cytometry test showed 0% detectable leukemia in her marrow.  There was not even enough disease in the chloromas for corresponding masses to show up on CT.  Only about 5 years ago there would have been no detectable disease anywhere – there was no Flow Cytometry and PET scans weren’t used for leukemia.  Even a year ago Allistaire had never had a PET scan, only CTs to look for chloromas.  We would all think she was cancer free, in remission.  That was then, this is now.

Since we couldn’t move forward with the T-cells with any hope of success, the goal is to see if we can get her in a better spot.  Her heart is still far too weak to endure any intense chemo.  The accumulation of hard chemo has killed muscle cells in her heart that will never be replaced.  They are dead.  There is nothing new to replace them, only the hope that the surrounding cells can compensate for their loss.  The very weapon wielded against her cancer has cut her through, has permanently wounded her.  This is why there is no transplant on the horizon.  It is for now, off the table.  There is no plan to move forward with a transplant.

So Dr. Cooper, after much thought and consideration recommended the course of treatment that we have chosen to pursue.  She began five days of Decitabine last Friday which will be followed with three doses of Mylotarg (generic name: Gemtuzumab) on days 6, 9 and 12 of this round.  Gemtuzumab is an antibody which is bound to the chemo molecule, ozogamicin, which then binds to the CD33 antigen receptor on the cell surface of myeloid cells (which is the cell line that is cancerous in Acute Myeloid Leukemia).  Once the Gemtuzumab antibody binds to the CD33 antigen, the whole molecular complex moves inside the cell where the cytotoxic molecule, ozogamicin, kills the cell.  “Calicheamicins (of which Ozogamicin is a derivative) target DNA and cause strand scission. Calicheamicins bind with DNA in the minor groove, wherein they then undergo a reaction analogous to the Bergman cyclization to generate a diradical species. This diradical, 1,4-didehydrobenzene, then abstracts hydrogen atoms from the deoxyribose (sugar) backbone of DNA, which ultimately leads to strand scission.[6] The specificity of binding of calicheamicin to the minor groove of DNA was demonstrated by Crothers et al. (1999) to be due to the aryltetrasaccharide group of the molecule.”  I included that last bit from Wikepedia because I love the wild intricacies of our flesh.  And because I’m sick and tired of people offering me simplified cures for cancer.  Essential oils do not cure cancer. Juicing doesn’t cure cancer.  Cancer is a beast of a million, trillion heads with thousands of faces ever-changing, mutating, hiding and lunging out again to strangle the life out of you.

If you read about Gemtuzumab, you will see it has a dark past and was pulled by the FDA in 2010.  Allistaire is actually only able to get it on a compassionate use basis.  However, questions about the trial that caused alarm over its perceived toxicity and lack of efficacy, have shown that it may not have been the right move to pull it.  It has remained available in Europe and more recent trials have shown promise.  Allistaire will receive her first dose this Wednesday.  The primary concerns are immediate allergic responses like anaphylactic shock which she will be pre-meded with Benadryl and longer term concerns for her liver including VOD (Veno Occlusive Disease).

….That was Monday, today is Saturday.  In the week preceding Monday, Allistaire, Solveig, Sten and I drove east on I90 all the way home to Bozeman.  Dr. Cooper supported us going home for a visit – Allistaire’s first time home since she left in October.  Sten took the girls to clinic on Wednesday morning, July 1st so I could pack without them knowing in case labs were bad and we’d be thwarted at the last moment.  But labs were fabulous and when the girls opened the door, Allistaire asked why all the bags were packed on the floor.  “We’re going home to Montana for a visit, sweet girl.”  She was beside herself.  She couldn’t articulate her amazement and joy.  I’d say she was flabbergasted and it was the best.  I loved that joy.  After staying the night in Spokane as we have done so many, many times we continued on east through a land that all cells of my skin, eyes, hair, fingernails all sought to soak in, like dear friends with whom you have long yearned to visit – blue of Lake Coeur D’Alene, marshy grasslands before Cataldo in Idaho, my great big hill I plan to climb one day – a hill already turning yellow in summer’s heat but great and white in winter’s cloak and shocking purple in spring with billions of flowers of a name I don’t know, that curve of rock that repeats pinks and purples of setting suns, a great boulder over green water – a swimming hole I imagine diving into its cool deeps and drying out in the warmth of the rock, tumbling great rounded groupings of rock like a Flintstone landscape over Homestake Pass, the river bottom with Cottonwoods in Whitehall and up that great curve of road that will soon bring my eyes to rest on the Bridgers in the distance – the mountains that are mouth to my home, to Kelly Canyon with its aspens, Rocky Creek, Bridger Creek, magpies and coyotes, black bears and deer, scores of red-winged black birds calling their eery beautiful cry in morning and evening, pairs of sand-hill cranes who sound as if they have mistaken Montana for Africa.  There a multitude of colors of grass like waves moving in the wind over the contours of the land, punctuated by the silvery blue of sagebrush, that wondrous smell of moist coolness of night soaked up in their leaves and released like blessing.  At long last we were home, home.

Every joy paired with splitting pain.  The familiar strange smell of our house built in the 70’s.  Waking to light on the Spanish Peaks, light on leaves and flowers and the great evergreens on the hill, piercing blue of summer sky.  The feel of smooth tile underfoot as I stumble to my bathroom at night – no handicap bar just lush toilet paper.  Spying Allistaire sitting on her closet floor playing with her toys in the morning, her sweet blonde head ascending the stairs to greet the day.  Birdnest ferns and mother ferns, variegated leaves and leaves pink, leaves with purple, plump sculptural succulents and fuchsia of orchid petals, light broken in pieces of rainbow color by the prisms in the windows, the delectable breeze moving up the canyon and occasional ring of wind chimes.  Sitting down together for pancakes, four in a row along the kitchen counter.  Sending laundry down the shoot, into the wash and taking it out to the line to dry in the already hot day.  When I went into the garage I broke down.  Fishing poles and life jackets and bikes and buckets and pairs of little shovels and bug catchers and gardening gloves with childish patterns, hiking boots and a bike rack – a life once lived.  A life stalled.  A life paused.  A life cut short?  I think of going to Cliff Lake last year and my heart breaks open.  How desperate I am for the smell of campfire and the negotiation of how many marshmallows are reasonable.  I pant for Hyalite, for the simple extravagant pleasure of driving up that road and seeing water ringed by mountains, of packing coolers for picnics and the heft of a pack on my back as we ascend through the forest.  I watch the girls out the kitchen window, they head to the thicket of bushes where they made a fort last summer, the little blue bucket having finally been removed from the branch where it hung for months.  They play long with a caterpillar, lovingly making it a home to enjoy and hit jackpot when I find what I told them was a baby mouse, but I now think must have been a vole.  They carry it back and forth with gloved hands, tender in their care and wonder.

We had a wonderful week all together and time with family.  On her last evening home, we celebrated sweet Per’s third birthday.  Allistaire rode the tricycle in her yellow dress with great blooms – a french girl’s dress.  Up and down the sidewalk she went.  At last it was time to say goodnight, but not just goodnight, goodbye.  And I watched as simple hugs and goodbye’s were exchanged and suppressed the desire to cry out, to yell – “do you not realize you may never see her here again?”  Every joy sat side by side with the fear that these days would never be again, that I was witness to the lasts of many things, things simple, things mightily beautiful, treasured beyond all else I possess.  Next to the image of her yellow dress and happy face in the waning light sat deep sadness that she was alone, no one to play with, a child who has so seldomly been able to play with her peers, with really any children at all.  The older two, Solveig and Haaken, were off on their big kid adventures and Per was enamored with the little neighbor girl.  Next to the image of her that night, an image of seeming lighthearted joy, sat images of Carly’s face with tumors bulging, pressing tight and purple and shiny taut against the skin, eye distorted.  I saw Benton’s face deformed by numerous tumors that contorted his features.  I saw his face laying in a casket as I filed past, tears streaming.  I knew I had seen something that terrified me.  Something I wanted to ignore, to disregard, to cover with more plausible explanation, but I turned back to it over and over and over, examining, questioning – what do I see there?  Something seems off.  Her right eye, something is not right, something is not normal.  What is it?  What am I seeing?

Sten drove her back to Seattle on Thursday so she could begin chemo on Friday.  He came to Allistaire’s appointment with Dr. Cooper with a list of questions I had, questions with answers relayed and more questions lobbied back.  Nestled in amongst the questions of did we really know if Allistaire’s cancer expressed CD33 and how do you know how many days and on what days to give Mylotarg, was the question, do you see something off with her right eye?  Yes, ptosis, a droopy or falling eyelid, an effect on the muscles of the eye.  Sten’s voice on the phone, “He ordered an MRI.”  “Oh God, why?  What is he thinking it might be?”  Later Dr. Cooper and I talk on the phone and he was concerned.  It could be a tumor pressing on nerves in her spine or in her brain.

For days Solveig and I were alone.  Just the two of us.  Just like old times.  Times when she was my little buddy and we went everywhere, just the two of us.  How dear she was to me, how overlapped with my life.  Then I had a miscarriage, a DNC, months of trying to get pregnant again, fear of miscarriage all over again.  Sorrow, fear, acrid poisons seeping into the crevasses of my heart and mind, weighing down my finger tips and shoulders.  Sober.  A turning.  I couldn’t laugh as easily.  Other private wounds and weeping added one to the other, layers pressing down.  Desperate cries to the Lord, a turning to the Lord like never before.  My first tastes of Christ as my very life, Christ the very fuel of my cells, the brightness of my eyes, my longing, my aching need for Him and the sweet, sweet knowing of really tasting the beauty of the Lord.  Sober.  Deep expanses opening up, being broken open down into the very core of myself.  A fundamental tearing, sinews strained and snapping, bleeding out, faint.  In these four plus broken years I’ve felt too weak to love Solveig as she deserves, as I long to love her and gosh, oh man do I love that girl.  I hunger for her eyes, her giddy laugh, her brown ringlets she desperately wants straight, her skinned bruised legs from play, the magnetic irresistible draw of books, of stories for her budding mind, her unstoppable creativity, the ever request for a back rub.  I love Solveig Kailen Anderson and I have missed that girl.  I have missed so much of her life because of all this with Allistaire.  When she was only as old as Allistaire is now, we sent her to Montana to live with her grandparents while I fought alongside Allistaire in the hospital.  The first relapse meant 8 months away from home and four plus more months of constant week-long trips back to Seattle.  This relapse it’s already been 9 months with no end but the worst in sight.

For three weeks I had the joy of being with Solveig, the most time I’ve spent with her in all these nine long months.  When at last Monday came and loomed as the day I would lay down to sleep knowing something more, something of that eye, I talked with Solveig.  I attempted to prepare her for what may be coming.  Dr. Cooper called around 5:30pm.  It’s not in her brain, but there is a 2 1/2 cm mass of leukemia in her right sinus.  It has begun to erode away the bone.  The tumor, the chloroma, is putting pressure on the muscles which operate her right eye, that’s why it doesn’t look right.  Right there.  Right there smack in the middle of my little sweet girl’s face dwells an insidious tumor that threatens to take more, to distort, to ravage, to gnaw.  There is also a very small one in her left sinus.  Dr. Cooper knows of children in which the leukemia eats away the bone into the brain.  Why Lord?  Oh God please, please don’t take her this way.

With shoulders slumped I came to face Solveig, to tell her this latest revelation of the onslaught of Allistaire’s disease.  I asked her, gently pleaded, be kind to your sister.  You don’t know how many days you may have with her.  Don’t fight over toys.  Treasure her, for one day we may have no medicine left to stop her cancer.  One day we may need to bring her home to this house to lovingly surround her as she dies.  I tell Solveig that she will not be the same girl she once was.  She may not be able to walk.  Her face may be distorted with tumors.  Her eyes may not work.  Will she be able to speak?  The imaginings are so brutal.  It just ravages my heart to imagine this for her.  Oh God it hurts, it hurts so bad.  Solveig is silent and then sobs heave and tears stream.  I hold her close and grieve time lost and a possible future without her sister.  How I so loved the thought of two sisters growing up together.  Solveig by herself, just another sorrow, another gaping wound.

The thing is, I can see on the other side of these brutalities.  I can imagine a life filled with joy.  I can imagine being close to Solveig, years ahead together.  I believe that there would be a day far off in the future where losing Allistaire wouldn’t decimate every day.  But to get there, to walk the possible road ahead, oh how overwhelming, how utterly horrid.  It is like facing the blackest tunnel, believing that it will eventually open up to light, but Oh God, how far, how long?  You think, I can’t do that Lord, I just can’t bear the loss of my sweet little girl – you think this is some sort of barrier to it actually happening.  I look at her little face, with that one eye askew, having many, many times a day to face that beast that is taking her.  I love her.  My whole flesh cries out – I love her TOO much!!  I just can’t lose her.  But neither is my love sufficient to hold her.

For twelve days, I soaked up Montana.  I brought my bike and at long last made friends with it.  I actually now crave being able to get on that seat, feet clipping easily into the pedals and heading out onto the curves of my dear Kelly Canyon.  I imagine the many adventures that bike opens up to me.  Morning after morning I went out into the land with vast expanse of sky opening up overhead.  Glory.  Absolute resplendent beauty.  My sweet mother-in-law, JoMarie, so generously gave me her bike, an orange bike, a bike built for Obliteride, a bike to carry my flesh into God’s wondrous creation and a means to raise money to heal the sick.  I had a fitting done at Bangtail Bikes in Bozeman and then it really became mine – it is now aligned to my body, to my outward self, propelled by the inner.  Then Wednesday morning, as the first light shone blue behind the Bridgers, Sten took me to the airport.  We embraced hoping not to see each other before planned in August, desperately hoping some new horror would not rise up in the next few weeks.  Back to the battlefield, back to a strange life of seeming ease where I regularly drink Starbucks and sit around, but just below the surface, if you have eyes to see, is an effort of epic proportions, an unyielding fight, a straining, a grasping for life.

I returned to Seattle on Wednesday morning because Allistaire had an echocardiogram and cardiology appointment scheduled in addition to her first dose of Mylotarg.  I went straight from the airport to Ron Don to drop off my suitcase and then walked as fast as I could to the hospital to make it in time for Allistaire’s labs.  How strange to wake in my bed in Montana and so suddenly and utterly cast into a different world.  The best news of the day was that Allistaire’s heart has gotten a wee bit stronger!  Her ejection fraction rose from 29 to 36 and her shortening fraction from 16 to 21!  It felt like finally being able to breathe a bit.  But blast, just as we’re making some progress with her heart, her cancer is on a rampage, spreading in terrible places with still not much to combat it.  Later in clinic she received Tylenol and Benadryl as pre-meds for the Mylotarg.  Allistaire promptly fell asleep for the next four hours while I finally had a bit a lovely down time.  Thankfully she had no reaction to the infusion and all seemed well.

After ten hours at the hospital, we finally made it back to Ron Don and I was straight worn out, having gotten up at 2:30am Washington time.  Having slept so long, Allistaire completely missed lunch and now I had only a short bit of time to get dinner and meds in her.  On top of it, about 8:30 that night, I noticed she felt hot and the thermometer read 102.6.  Well, they were expecting this right?  This is why I was given a third dose of Tylenol to give her as instructed at 9:30pm.  The truth was I was wiped out and dreaded the fiasco of having to call the Hem/Onc Fellow to report the fever which I knew would result in being sent to the emergency room for blood cultures and possibly admission and antibiotics. Dr. Tarlock had warned me on Tuesday night that she may need to be admitted on Wednesday since her phosphorous and potassium were rising, signs of tumor lysis.  She may need to be monitored, but her labs had improved on her own and we had skated by.  But not calling in about the fever was a major failing on my part, really a huge mistake for any parent of a child with cancer.  We finally went to sleep after she threw up a wretched medicine twice – a medicine meant to bind with potassium.  I already had a laundry bin full when she had diarrhea twice as well and I had to change the sheets.  In between all the wakings that night, I continually took her temperature and watched it steadily descend to normal.  It was just because of the Mylotarg I told myself.

We were back to the hospital Thursday morning at 8am for electrolyte labs.  So here’s the deal, when chemo destroys cancer cells, the cancer cells lys – they die and break open spilling all their guts into the blood stream.  This is tumor lysis and it is detected by rising levels of potassium, phosphorous and uric acid.  It becomes dangerous when these electrolyte levels rise steeply, beyond the limits of what the kidneys can process.  Then you see the creatinine and BUN (Blood Urea Nitrogen) levels rise which indicate injury to the kidneys and the potential for kidney failure.  High levels of potassium can also cause arrhythmias of the heart.  So when Allistaire’s labs results returned this past Thursday morning, it was game on time.  Dr. Tarlock and Dr. Cooper were amazed to see overwhelming evidence of tumor lysis with all levels skyrocketing.  We were going to be admitted.  Then the plan intensified with measures being taken to have an Interventional Radiology surgeon install a second central line into Allistaire with the aid of Cardiac Anesthesia for the purpose of her beginning short-term dialysis immediately.  The goal was to respond quickly to this acute kidney damage and prevent kidney failure or long-term kidney damage by taking all of the burden off of the kidneys.  Because of Allistaire’s heart failure, her heart would not be able to endure the huge amounts of fluid that would be necessary to help the kidney’s flush out these electrolytes.  And because the kidney’s were already hurt, they could not endure the assistance of Lasix to remove the fluid.  So really, dialysis was the best option.  By 3pm we were once again in the ICU, this time in Forest level 5 room 321, exactly one floor down from where we spent 80 days in the ICU before.

In the time we waited for everything to be arranged, Dr. Tarlock consulted with cardiology about how much fluid Allistaire could handle on her own and she began receiving just 60ml an hour of saline.   To lower Uric acid levels, she was given a dose of IV Rasburicase.  She was also given Sevelamer to bind with phosphorous.  The problem is, Sevelamer can only bind with phosphorous in the gut, not in the blood stream.  Because Allistaire’s phosphorous was so high, Dr. Tarlock feared this would not be enough and we would need the aid of dialysis.  At last we were settled in our room in the ICU.  Yet when the labs drawn at 2pm came back, everything was trending in a much more positive direction due to the interventions already taken.  About ten minutes into a fascinating conversation with the Interventional Radiologist about collateral veins that a young body like Allistaire’s form when other veins are damaged, the ICU attending came in to say we were going to hold off on dialysis for now and continue to monitor labs.  It ended up being a crazy short and remarkably easy ICU stay.  Basically Allistaire just watched movies, got her meds and some IV fluids while I tried to get food in her and grumbled that I couldn’t eat in the room.  Because Allistaire was scheduled to get her second dose of Mylotarg on Saturday, we were just going to stay inpatient through Sunday with frequent labs to quickly deal with any issues if they should arise.  Friday morning we were to transition upstairs to the Cancer Unit except that they had no rooms available.  Finally on Saturday afternoon, we moved upstairs to the Cancer Unit into the radiation room – a room specially designed to give MIBG radiation to neuroblastoma patients.  It is a lead-lined room with most surfaces being stainless steel.  It’s not the most cozy room and the bed is about a foot to short due to having to accommodate the thicker lead walls.  But it meant getting the show on the road and I didn’t care.  I just wanted to get the Mylotarg in and get out of the hospital.  At long last, on Sunday afternoon we burst out of the hospital into the blaze of a 95 degree day, having completed the second dose of Mylotarg with absolutely no issues, no fevers and labs still looking great.

Yesterday, it was back to the hospital for labs and possible platelets.  I was pretty sure Allistaire would need them because of the small purple pricks of petechiae (tiny broken blood vessels) mixed in like a new wave of freckles on Allistaire’s cheeks.  A single round purple bruise adorned Allistaire’s forehead right between the eyebrows like some new-age tilak mark, in this case having bonked her head on the bar of the Target cart which she was eagerly driving when it rammed a shelf.  Sure enough, her platelets were 5 and so we spent the morning at the hospital getting her all tanked up.  Today we head back into the hospital again for labs and her third and final dose of Mylotarg.  Tomorrow, yet again, for the twelfth day in a row, we will be in the hospital for her clinic appointment with Dr. Cooper.  From there…well, we wait for her marrow to eventually recover, hope no infections get her and eventually plan to do another bone marrow biopsy and PET/CT to see how things worked.  After that?  Who knows.  If she were miraculously clear of cancer, we might be able to proceed with the infusion of modified T-cells (this is not a transplant).  If she has a partial response to the Mylotarg, it may make sense to try another round of it.  If there is no response or her disease has progressed, well, it all depends…of course we would investigate all our options for other treatment or the woeful possibility of being done.

Honestly, the next several weeks terrify me.  Obliteride is coming up – only 17 more days.  I wonder what life will look like as I ride that day.  By the way, I reduced my route to the 25 mile because I just haven’t had the time to train as needed to make the 50 mile enjoyable.  Three years ago on the afternoon before Obliteride, I was told that because Allistaire had disease after transplant, that she had a mere 5% chance at survival and probably wouldn’t even live 6 months.  I was decimated, inside and out, that day as I rode on my old mountain bike.  Last year, I physically had a hard ride, not being prepared for the 50 mile, but was propelled with determination to finish in light of all the pain and hardship Allistaire had endured.  But I rode that day with hope – having had Allistaire declared cancer-free only two months prior.  This year, who knows.  These are very scary times.  The Obliteride folks had invited Allistaire to be part of the Friday night kick-off party, but as her disease has progressed, I’ve had to say no to this, not knowing where things will stand on August 7th.

A little girl, Melissa, that I knew through friends, died of AML a week ago.  Last night, my friend Kiesha and I talked as she got back labs in Missoula.  It looks like Stevie has once again relapsed with AML and they will head back to St. Jude’s today or tomorrow.  As I was praying for her yesterday, knowing she was trying to get labs because of all of Stevie’s bruises, I put myself back in that place of waiting for news of possible relapse.  You have at long last returned to the magnificence of a “normal” life.  You gaze at your child in a way that no parent of a healthy child can fully imagine – your whole self rejoices at the smallest normalcies, ordinary becomes spectacular pleasure.  But when signs creep in that something is awry, the stinging is fierce and unrelenting.  It is like watching a black storm on the horizon, you see it coming and you know it is about to engulf your life and twist and spin and splinter you and your beloveds until at long last you are spit out on the ground, broken, with the life pummeled out of you.  It is a tsunami that sweeps you away from your life in an instant and you are put back in that place of fighting every day for life.  To just simply live is all you want.

I long for a better way.  I long for a day when cancer isn’t a ravager, a likely sentence of death.  I long, oh I ache, for a day when the way you fight cancer doesn’t cost so much life and destruction of beautiful body parts like ovaries, and hearts and brains.  I see my child.  I see the children of my friends.  A few have been released back into glorious life, but many stumble around from the horrific effects of radiation to the brain, limbs cut off, hearts faint, and some in caskets.  Cancer is the number one killer of children by disease!  I have asked many times, and I will ask again.  There are so many, many worthy places to invest your resources, your money.  But I am asking if you would consider giving it to further cancer research?  One in two men and one in three women will get cancer in their lifetimes.  You may be the one desperate for a better way, and if not you, it is almost certain that someone dear and close to you will be aching for a better way to eradicate, obliterate, cancer from their life.  Cancer is personal, it comes in close to each of us.  Will you join us in putting our resources to stopping this foe?  One hundred percent of all the money given to Obliteride directly funds cancer research at Fred Hutchinson Cancer Research Center.  Do you live in Bozeman?  Do you know that the Cancer Center at the hospital is part of the SCCA – the Seattle Cancer Care Alliance which is a collaboration of Fred Hutch, the University of Washington and Seattle Children’s?  Giving to Obliteride directly opens doors for clinical trials that you in Bozeman may need!

Thank you SO much to the over one hundred different people/couples/groups that have already given to further cancer research in my name through Obliteride!  Yesterday, you helped me surpass my goal of $15,000.  But I know there are many of you still who profess your love for us, your desire to support us in any way, who have not yet given.  Would you consider honoring Allistaire’s fight in this way?

Click HERE to donate to Obliteride and directly speed up cancer research!

The research is taunting.  It is moving at such an amazing pace, but I often fear Allistaire will just barely miss the thing that would at long last put down this beast of cancer.  You don’t want to hear it.  You think I’m crying wolf.  And oh how I long for you to be right.  I long for the Lord to once again make a way through for Allistaire.  I know, I absolutely know He is able to heal her.  I listened to the Nigerian woman tell me to pray, to fast, to believe, to test the Lord and demand He heal her as she has done for her son who is getting a transplant for Sickle Cell.  She proclaimed her faith in the Lord’s ability to heal, over and over and over.  But that seems too simple to me.  I just don’t believe in some magic equation where enough people pray or my faith is somehow the right degree of strong and then out pops what I want.  God is too big for that.  He is too vast and complex and when it comes down to it – He is just OTHER than me.  He is utterly “other’ and His ways are not my ways.  I don’t begin to know how my little life and my little child are woven into His great plans.  But the thing is, I do, I do believe they are part of the bigger picture.  I don’t believe our “littleness” equals lack of significance.  And what is the purpose of my life, of Allistaire’s?  Is it not our great joy, fraught through with pain, to direct attention, to illuminate more the beauty of the Lord?  God does not need more glory.  He is not some pathetic being needing me to build Him up.  No, WE need to see the glory of the Lord!  We humans need to see Him for who He is that WE MAY LIVE!  That is why I yield my life to the glory of the Lord – because I love, because I know my own great need to be engrafted into His life blood, that I MAY LIVE!  And not just live, but live an abundant, eternal life.  And in turn, I am honored that my life may in some small way direct attention to the radiance of Christ as the only source of life!  May I be so audacious as to link my life to Christ’s?  Is this not exactly what Christ did on an epic scale?  He suffered and He laid down His life that life might spring up from His death!  This is the “otherness” of God!  Out of Christ’s death, the ground soaked by His blood, God overcame sin and death!  He resurrected the life of Christ and in so doing made the way for redemption!  Is there anything more wondrous, more mind-blowing, more exploding with glorious beauty than this?  THIS is what I am invited into!  In my own power, this awful road with Allistaire is just suffering, is just agony, is just death. But God is at work!  He is alive and HE will take this heart of mine bleeding out as He may not remove this cup from me and He will accomplish life!

I lift my eyes to these wonders.  Sometimes I am too frail and weak to even open my eyes and I need the Lord to come down low and tenderly care for me.  I went to church with Jo in Bozeman and heard God’s word preached for the first time in a long time.  I was reminded of God’s otherness. I was reminded of the way He blasts my rational understanding to pieces and shows me a better way, the way of life.  I could hardly sing the worship songs.  I just cried.  I cried because the last time I was in that place was to honor Jens’ life and to mourn his death.  I cried looking at the man playing the drums, wishing so desperately it could still be Jens.  I cried because the words of those songs were just too much.  “There may be pain in the night, but joy comes in the morning.”  Oh Father, oh Father, how long is this night?  The joy seems ever so far off – is there even a glimmer of light on the horizon?  Words about how our life is not our own, how we give it to the Lord.  That sounds nice.  You can agree to that right?  Your life is the Lord’s.  How lovely.  You sing it out with beautiful voice.  Sobs fill my throat.  Oh God, oh God, I do yield, I do lay down at your feet, but it is agony, it is ravaging, it feels like brutality.  I cry out with Christ.  My God, my God, why have you forsaken me?  But I am given light on the horizon, the smallest hint of turning, I am given hope that this night will end.  I read in God’s word beyond that black moment on the cross.  I read of resurrection, of redemption, of light unyielding.  I stake my life in the hope of God’s promises.  I have tasted of the Lord and I will not turn back.

Where shall I go from your Spirit?
Or where shall I flee from your presence?
If I ascend to heaven, you are there!
If I make my bed in Sheol, you are there!
If I take the wings of the morning
and dwell in the uttermost parts of the sea,
even there your hand shall lead me,
and your right hand shall hold me.
If I say, “Surely the darkness shall cover me,
and the light about me be night,”
even the darkness is not dark to you;
the night is bright as the day,
for darkness is as light with you.  (Psalm 139: 7-12)IMG_0391 IMG_0403 IMG_0411 IMG_0418 IMG_0428 IMG_0441 IMG_0447 IMG_0449 IMG_0450 IMG_0452 IMG_0456 IMG_0465 IMG_0468 IMG_0469 IMG_0470 IMG_0479 IMG_0480 IMG_0481 IMG_0511 IMG_0521 IMG_0524 IMG_0530 IMG_0535 IMG_0539 IMG_0541 IMG_0543 IMG_0548 IMG_0549 IMG_0551 IMG_0555 IMG_0562 IMG_0565 IMG_0574



IMG_2591Notice anything different?

That’s right, Allistaire was extubated today!  During rounds this morning it came to light that the donor lined up today to donate the neutrophils was ineligible which meant there would be no transfusions today.  Our sweet PICU doctor, Tom Brogan, suggested that since she has been doing so well, that we should remove the breathing tube.  He said that while it is possible that she could get sicker once she had the transfusion of neutrophils, that more than likely she would do well.  He felt safe about giving her a chance without the breathing tube, knowing that if necessary, it can go back in.  So over a relatively short period of a few hours, a step down approach was taken to her ventilator, culminating in the removal of the breathing tube.  It was of course quite traumatic for her for a short bit, but she calmed down soon enough.  What really made her mad in fact was not the removal of the breathing tube so much as then having to have the nasal cannula placed for high-flow oxygen.  She is on the high flow mostly to help inflate her lungs, thus reducing the work of her lungs and in turn reducing the work for her heart.

It was the most wonderful sound in the world to hear her voice, soft and raspy though it was.  “She’s come back to us,” I rejoiced.  It really did feel like we got our girl back.  Since that time in mid afternoon she has been doing really well.  She isn’t up for much talking but has said a few things and said Hi to Solveig on the phone.  The other joy is that she has been able to keep her hands off of the tubes and was thus freed from her little blue quilted handcuffs.  She seems to be enjoying moving around more on her own as well. Since Saturday morning she has mostly sat in bed like a great bloated buddha in a semi-lotus position.  For the first time, she has moved over on her side on her own.  She is stretching out her legs, raising her arms over her head, gripping on to Doggie, Piggy and Kitty and of course, sucking her thumb.  She was actually awake enough to watch some cartoons for a few hours this evening on her iPad.  This is by far the longest she has been awake since we got here.  In fact, most of the time she only has had her eyes open for a few minutes at a time.  This is in part due to the fact that they have been able to turn down her morphine a bit since she no longer requires the same amount of sedation as she did with the breathing tube.  But after a few hours, she was definitely done.

While extubation was a major event, it really was a rather quiet day.  Sten got some work done down in Starbucks and my mom came over for a visit.  Behind the scenes the nurse and doctors have been really trying to strategize how to reduce her fluid load.  There are SO many fluids they are trying to get in her body.  The antibiotics alone end up accounting for a good deal of volume.  Additionally they are really trying to get in her TPN, though that is the fluid that has the lowest priority.  Her potassium was down and so she was put on a drip that they are trying to convert over to the TPN and they even concentrated her morphine.  It continues to be a delicate balance of meeting all the varying, sometimes competing needs.  Because her blood pressures were doing so well, they did give her a dose of Lasix which pulled of an impressive volume of urine.  Thankfully her kidneys continue to function well.  The nurses are also consistently attending to the NG tube and pulling out the fluid from her stomach which makes about a half a litre of fluid each day.  They also can pull out air that seems to have gotten in her tummy.

Overall the plan simply remains trying to keep her stable.  The only big change that I know of is getting the neutrophils tomorrow.  As was the case yesterday, Allistaire has asked for Sten a number of times when he was out of the room and she had become agitated.  They are just so sweet together.  I knew before I married Sten that he would be a great dad.  He is so tender and kind to her.  What a gift he is to us!

As you can see, our Solveig got her violin today.  She is so excited about learning to play.  We are blessed to have Sten’s family helping out so much with her at home and to have Grandma JoMarie’s help with music lessons.  We have bounty upon bounty.  A sweet woman I do not even know, other than her name, dropped off a mini feast for Sten and I to enjoy tonight, without even asking.  Thank you Libby 🙂  Thank you so much for all the abundance of prayers and just amazing compassion.  We take joy in our indebtedness to you all!

IMG_2585 IMG_2586 IMG_2589 IMG_2592 IMG_2597

PICU Day 2


IMG_2564Allistaire was so stoked for the big Seahawk’s game today.  She was cheering for Russell Wilson the whole time.  Okay, so maybe not.  But Sten and I had fun watching the game in between the many steps taken to move Allistaire forward with support through this process.  It was a busy day but overall calmer and more relaxed as Allistaire seems to be in a really good place.

A Foley catheter to drain off urine was inserted this morning. This allows for urine volume to be tracked very precisely which in turn provides more exact calculations of fluid intake and outtake.  Additionally, a probe component of the catheter provides the internal abdominal pressure.  Another fine feature of the Foley, is a precise and constant internal temperature that displays on the screen along with all the other numbers being monitored.  They are also now taking girth measurements which also allows the doctors to track changes with her abdomen.  So far we are encouraged that her abdominal pressure is normal.  Her urine and stool are checked for blood, as is the contents of her stomach on occasion that is drawn out by the NG tube.  So far there has been no sign of blood, though she has not had any stool as of yet.

Because Allistaire’s blood pressures have stabilized, they have added Milrinone which helps to dilate the vessels thus reducing the pressure the heart is working against to pump.  It also helps the heart itself with pumping so that there is greater blood profusion to the tissues throughout the body.  This should help the heart not have to work so hard on its own and provide more blood to her gut where there is tissue at risk of cell death, as seen on the CT. If you look closely near the bottom (slightly left hand side) of the CT image, you’ll see a small white ring with a dark gap on the upper left side.  This white ring and the white line beyond it show the thickened wall of the bowel and the dark spot may indicate lack of blood flow and thus necrosis.

Today they increased her transfusion thresholds, platelets going from 10 up to 50 and red blood from 21 to 25.  They want her to be in a strong position, especially with any potential internal bleeding.  Her hematocrit had risen to 41 from about 27, not because her marrow is making new red blood cells but due to her dehydration yesterday.  The blood was more concentrated, resulting in a higher concentration of red blood per the volume of blood.  This means it is a little difficult to accurately determine her true hematocrit.  They will take into consideration both her hematocrit and her fluid needs in determining when to give red blood.  This morning she was given a transfusion of platelets and this evening, red blood.

She will be given a GCSF (Granulocyte Colony Stimulating Factor) shot to stimulate her marrow to produce blood cells.  Without this stimulation, she would typically have zero white blood cells for the next two weeks.  Given the severity of this infection, Dr. Gardner (who consulted with not only Dr. Tarlock and Dr. Ho, the two AML docs here, but also with our beloved Dr. Pollard) wants Allistaire to have these shots to speed up the recovery of her marrow.  For myself, I have quite a fear of the GCSF shot.  When Allistaire first relapsed back in February 2013, her first course of chemo involved GCSF with chemo.  This was the round that on Day +16, she had blasts for the first time.  Dr. Gardner understands my fear but believes the benefits outweigh the possible con.  Based on her last bone marrow, there are no detectable cancer cells so in accordance with the idea that she has no cancer, the GCSF shots cannot obviously produce cancer cells.  If they are there, well, they’re there and there’s nothing to do about it.  Having her recover from this infection is the absolute highest priority.  The shot will likely be given every day for the next few weeks, around 6pm.  Those with other forms of cancer that do not originate in the myeloid blood line, are often given GCSF shots to help them recover more quickly.  Tomorrow evening she will also begin daily infusions of donor neutrophils which will likely make her sicker before she really gets better.

This evening Allistaire began getting TPN (Total Parenteral Nutrition) and lipids.  TPN looks like a big bag of urine but quite awesomely contains all of her necessary nutrients.  The lipids (fats) look like the purest cream you can imagine.  These should begin this evening as well. Each day she will also have her chest and several views of her abdomen x-rayed.  Today her chest x-ray looked  more clear of the bit of fluid that had gathered in her lungs.  I haven’t heard that there was any significant change shown in her abdominal X-rays.

The hardest part for Sten and I are the times that she is desperate to communicate with us and tries to speak but no sound comes out (the breathing tube goes right between the vocal chords).  This afternoon she was asking and asking for something to drink.  It is uniquely awful to tell your child they cannot even have a sip of water and to know that it may be weeks before she can.  When she had to get an IV placed in her foot in order to provide enough lines for all of her meds, she silently screamed, “Take it out.”  When only a half an hour later, the nurse had to give her the GCSF shot, her eyes again shot wide with terror and she was intent on telling us something we never could interpret.  I sincerely hope she won’t remember this time.  Thankfully I think they have truly found a great spot of balancing adequate sedation with her morphine where she is not expressing pain overall and sleeps a lot but is also very interactive and can answer yes and no questions and can ask for things like her blanket to be pulled on or off of her.  In one of the close up pictures, I asked her to smile.  It is barely visible in the picture but when you are with her you can very clearly see her sweet spirit.

It hurts to see her so debilitated.  On the other hand, I have felt mostly content and at rest with this process.  Dr. Gardner said that this is a bad case of typhlitis, which if you look it up, you will see is really not optimal.  She is very hopeful that she will be able to clear this infection in time and will be able to proceed with transplant as planned.  Despite all of the interventions, Allistaire is tolerating everything extremely well.  It reminds me so much of transplant where there was a lot going on and it looked very scary, but what was happening was well understood and they were able to adequately respond to her needs.  This sort of scenario is precisely why Allistaire stays in the hospital, “awaiting count recovery.”  Chemo is just one piece of providing for her in this fight against her cancer.

These days make clear what it is to be “immune suppressed, ” to be “immune deficient.”  This is what it looks like to be totally vulnerable and without defense.  This is the major downside to chemotherapy, it kills the bad guys and the good.  One day I hope for a means to destroy cancer that doesn’t come at the cost of my daughter’s ovaries, her heart, her bowel.  I get giddy imagining a day when little girls and mom’s and grandpa’s can get cancer treatment without putting them right in the way of other potentially life threatening dangers.  A few years back I read a fantastic book entitled, “Biomimicry: Innovation Inspired by Nature.”  Biomimicry is defined as, “an approach to innovation that seeks sustainable solutions to human challenges by emulating nature’s time-tested patterns and strategies.  The goal is to create products, processes and policies – new ways of living – that are well adapted to life on earth over the long haul.”  The author explains that most often we as humans use the “heat, beat and treat,” methods to create.  We use high heat, extreme pressure, and significant chemicals to create which in turn neither produces as quality products nor sustains the environment in which they are created.  Animals and nature, rather, use processes that sustain the surrounding environment and produce amazing products.  The abalone shell is one of the hardest materials on earth and is accomplished by an elegant laying down of hexagonal molecules in layers that don’t directly overlap.  An abalone creates it’s shell out of materials readily available in its own environment and in such a way that its environment is sustained.  This is not even close to what humans do to create steel.

I could go on and on about the many beautiful accomplishments of nature, but in our scenario, it is the immune system that gets all the glory.  The immune system is amazing at detecting and destroying invaders that would harm the body and it does it in such a way that the health of the body is sustained.  The immune system is the hope of future cancer treatment.  One day, we will no longer have to indiscriminately dump poisons into people with cancer in hopes that the pros outweigh the cons.  No don’t misinterpret what I am saying.  I am weary of a segment of folks talking about chemotherapy like it is “evil,” and should be avoided.  Chemotherapy is a phenomenal gift and has accomplished a lot of good.  Cancer is extremely complex, far more than the average person could ever imagine.  Chemotherapy, in many ways, is targeted and works in impressive and complex ways.  But alas, it is still so far from ideal.  But that “one day,” is already beginning.  The immunotherapy being developed is rapidly opening up amazing options for more precisely targeted cancer cell death, accomplished in such a way that the bodies own systems kill and clean up.  You guessed it, we need more cancer research!  Allistaire needs better options!  What about your kids?  What about your grandchildren?  What about your mom or yourself?  Cancer touches so many lives right in your little circle.  We need better options for ourselves and for those we love!

As today comes to a close, I am so thankful for what the last 24 hours has accomplished.  Sten is here.  I am thankful for his support and sweet Allistaire asks for him almost every time he leaves the room.  This evening she seemed quite upset after having to be wiped down and was crying little silent tears.  Sten and I tried so hard to understand the motions of her mouth.  Finally we figured it out.  She just wanted daddy to sit next to her and hold her hand.  What dear, sweet, unfathomably precious people God has given me.  IMG_2562 IMG_2565 IMG_2567 IMG_2570 IMG_2572 IMG_2573 IMG_2576 IMG_2580 IMG_2582 IMG_2583 IMG_2584



IMG_2560IMG_2559As of 8am this morning, Allistaire has been in the ICU.  It is amazing the contrast of 24 hours.  Yesterday, she awoke with cheer and joy and her ANC, (absolute neutrophil count), dropped to zero.  The ANC is the best indicator of the white blood cells available to fight any and all infection.  As of yesterday, she has been utterly without defense.  I have heard of what can happen when your body is without its natural ability to fight.  Now I have seen it.

While I am well versed in much of what has happened to Allistaire over the last three years, todays events have presented a number of challenges she has never faced and are new to my understanding.  Those out there who are medically knowledgable will probably find a number of flaws with my explanation, but I am doing my best to piece together what happened when and why and where we are now.

I will start by saying that Allistaire is stable.  She has never, ever been this sick and never had to be hooked up to so many things.  Currently she has 5 med pumps going, a breathing tube attached to the ventilator, three leads on her chest to track heart rate and respiration (breaths per minute), a transducer hooked up to her Hickman line to check her CVP (Central Venus Pressure) which is indicative of the volume of blood moving from the vessels of her body into her heart.  If her CVP drops, she may be dehydrated and need more fluid.  More on fluids in a moment.  Lastly, she has an Art Line, a special line that goes into the artery of her wrist in order to provide constant measures of blood pressure which is much more reliable than the blood pressure cuff.  Prior to the Art line being placed, her blood pressures were varying dramatically and were not providing sufficient and accurate info for the medical team to assess and respond.

In short, Allistaire has some sort of infection, most likely bacterial.  Over the past week since being admitted she has done incredibly well.  She never threw up, had an amazing appetite, was drinking so well that once her chemo was complete she was taken off of her IV and had tons of energy.  She would bike around the Unit so fast that I would have to constantly remind her to slow down.  On Thursday her appetite started to wane a bit and I was not surprised on Friday morning to learn that her ANC had hit zero.  She threw up her breakfast that morning but was overall fine.  Friday evening she began complaining of abdominal pain.  I assumed that she probably was beginning to have abdominal cramping from diarrhea as she did the last round of chemo.  However, around midnight, she spiked a fever which prompted the nurse to draw blood cultures which looks for any bacteria growing in the blood.  Her heart rate was high (170-180s) and so she was given a bolus of fluids, assuming she was likely a little dehydrated.  She was given two more boluses due to her heart rate remaining high and then a dose of Dilaudid to address the pain in her belly.

The hospital protocol requires a Rapid Response Team if three boluses of fluid are required in a set (relatively short), period of time.  This results in the patient being sent to the ICU.  Additionally, the Dilaudid caused her blood pressure to drop.  For the past three years, this very scenario has been described to me.  I have been told countless times that kids are resilient and look really great even in the face of illness until suddenly they can no longer compensate and it all starts to fall apart.  Due to the nature of the chemotherapy used to treat Acute Myeloid Leukemia, the patients bone marrow is completely suppressed, resulting in neutropenia.  The truth is, they can be very sick and you can’t even readily tell because their immune system may not be able to mount much of a defense.  For these reasons, kids treated for AML are kept inpatient far more while they neutrophils are so low and why we are required to go no further than 30 minutes from the hospital.

When Allistaire arrived in the PICU (Pediatric ICU), she was breathing very rapidly (about 100 breaths per minute), breathing shallowly, her blood pressures would periodically drop very low (down into the 20s) and she was quite agitated from pain in her tummy which was distended and hard.  Her whole body is puffy from fluid.  Her body is having an inflammation response to the infection which in turn causes her vessels to be leaky and the fluids to leak out into the surrounding tissues.  They continued to give her boluses of fluid and added on Norepinephrine which is a vassal presser to cause the vessels to tighten up and constrict, thus increasing blood pressure.  The doctors are referring to her situation as sepsis and that she is in compensated shock.  The primary goals are to address the bacterial infection itself and to assist her body in its great effort to respond to the infection by supporting her in a variety of ways.  The primary tasks were to get a more reliable means of obtaining blood pressures, aiding with her breathing, determine the state of her heart in response to all the fluid, to provide broad, sufficient antibiotic coverage and to determine by CT, what was going on in her gut.

In order to get a CT (Cat Scan), she needed to drink oral contrast which would then take two hours to move through her system.  While this was being accomplished, an Echocardiogram of her heart was ordered and discussion began on how the best ways to determine her blood pressure.  First a transducer was set up with her Hickman line in order to determine her Central Venus Pressure.  Initially this was not working properly and the decision was made to go ahead with prepping to insert an Art line.  It was also decided to put her on a CPAP machine which would more forcefully blow air into her lungs which would not only provide oxygen but also help keep her airways open.  In the midst of this time, she had her Echo conducted.  It took some work to get her set up and stabilized to be able to transport to radiology for her CT.  Once she returned from radiology, everyone was prepping for CPAP and the insertion of the Art line. Right about the time they were ready to proceed, Allistaire threw up.

Throughout the day, the attending PICU doc had discussed with me the possibility that Allistaire may at some point need to be intubated which means a breathing tube is inserted down her throat and attached to a ventilator which would ease her body’s burden and breath for her.  At one point the doctor noted how long Allistaire has been sick (as in the last 3 + years) and said that it was really our choice if we wanted to move forward with this intervention.  She was implying that we did not have to continue to intervene if it was just too much.  To be fair, she had never seen Allistaire outside of this setting and while I found the option appalling and repugnant, I think she was ethically trying to make our options clear.  It was a hard moment.  I also asked her if I should have Sten come out.  She said that while she does not anticipate this being the case and that it is highly unlikely, it could come to the point that they would not be able to extubate her which would mean that our time to ever talk to her again could be limited.  This was when I called Sten to look at flights and see when he could come.  I had no time to explain to him what was happening only that he should come.  After researching the options, he and his mom and Solveig began driving to Billings so that he could fly out to Seattle on the 6am flight and be here by 7:30 Sunday morning.

Once Allistaire threw up, the doctors decided it would be safest for Allistaire if they were to go ahead and intubate her.  The concern was that if she threw up while on CPAP, she could aspirate (throw up go into her lungs and cause damage), where as if she aspirates on the ventilator (which she later did), it would be caught by the “balloon” in the breathing tube and to then be suctioned off.  Additionally, an NG tube or a Salem Sump, was inserted into her nose in order to pull out anything in her stomach including fluid and gas.  The plan throughout the day continued to change as new information was gained.  Results from the echo showed that her shortening fraction had dropped from 32 to 20.  The increase of fluids was also causing her heart to be more floppy and less able to constrict.  This prompted the addition of epinephrine to help her heart muscle contract and in a way, counterbalance the effects of the norepinephrine.  After much preparation, she was sedated (not completely) and they then placed the breathing tube and got that all situated.  The doctor then moved onto the insertion of the Art line which was very interesting to watch.  He used a small wand with ultrasound to determine the location to best place it.  Once it was all set up, he put in a stitch on each side of the line into her hand to secure it into place.

The next bits to tackle were a consult from the ID (Infectious Disease) docs and the surgeons.  The ID docs reviewed all of her past infections and recommended a few changes to her antibiotic coverage.  She is now on Cefepime, Gentamycin, Linezolid, Flagel and Micafungin.  The results of the CT showed typhlitis as they suspected.  Possible reasons to do surgery would be if there were a perforation, obstruction or to resect portions of dead (necrotic) tissue.  However, because she has absolutely no neutrophils with which to fight infection and heal, the dangers of surgery often outweigh the benefits.  Thankfully there is no evidence of perforation or obstruction.  The CT did show a “marked bowel wall thickening of the Sigmoid Colon and the rectum and a mild thickening of the transverse colon. It is suspicious for neutropenic colitis.”

For now she is stable, blood pressures are stable and in a good range and she is much more comfortable.  They are watching her lactate level which is slightly elevated and can be a sign that her body is still working too hard.  The nurse has been able to wean her off both the norepinephrine and the epinephrine.  She will continue to be intubated for now and we simply have to wait for the antibiotics to do their job.  On Monday, and for the following 6 days, she will be given transfusions of neutrophils.  I had no idea that this was possible.  A donor, who is HLA matched with Allistaire, will be given a GCSF (Granulocyte Colony Stimulating Factor) shot that will cause their bone marrow to produce and release neutrophils which will be then collected, processed and given to Allistaire.  Cool huh?!!!

In this midst of this all, Allistaire has done a remarkable job dealing with all the invasion and discomfort. Until she was sedated, her little independent big-girl self, insisted on going to the bathroom in the little potty chair rather than in her diaper.  Throughout she has been very cognitively aware and articulate.  Her greatest frustration has been not being able to drink (no food or drink for now) and she absolutely HATED the CPAP mask.  It drove her nuts to not be able to rub Doggie’s fur up against her nose and such her thumb easily.  Even now that she is sedated, she is still doing well.  A friend visited and when Allistaire heard her voice, a smile passed her lips.  When Solveig said, “Hi Allistaire,” on the phone, Allistaire waved her hand.  The hardest part for me is that she can’t talk because of the breathing tube being positioned at her vocal cords.  It is so painful for me to watch her trying to talk, to communicate how she is feeling or what she wants and not being able to understand.  Thankfully, she is able to communicate yes and no.  There have been a few times when her eyes suddenly go wide and she looks afraid.  This hurts my heart for my girl, but she is pretty readily calmed.  I know my little fighter is in there and her tenacity is serving her well, even if we cannot hear her voice of defiance.

Yes it’s been a rough day, but man, this is the first time in three years that we have gotten to this place.  That in itself is an amazing provision.  I have total confidence in the PICU team and our sweet attending Hem/Onc doctor, Dr. Leger, stopped in multiple times to check in, including at nearly 11pm before she went home to her own family.  Allistaire has a lot of support right now but all seems well.  I am told that once those neutrophils from the transfusion enter her blood stream, they will go straight to the areas of infection and start to battle.  She will likely get sicker before she gets better.  There may be a cytokine storm (proteins in blood from cell death).  It could get scarier before we see better days, but this is what must come.  What gift to have so many people’s brains and experience and persistence come together to care for my sweet girl.  I am in awe at all that we are able to do to support this one small life.  Oh what gift that so few on this earth have ever known.  Life.  Life.  Beautiful life.  And beautiful body, so complex and miraculous.

I’m pretty tired and Sten should arrive early in the morning.  Lord, thank you that though we cannot foresee how our days will go, from morning to night they may swing dramatically, but you are not caught off guard.  You know the days before us.  Thank you for your provision of so many amazing people and crazy cool meds that can fight and care for Allistaire.  Thank you for that incredibly beautiful little girl that I can only love more every single day!


Thanks and thanks and thanks, giving thanks


Little three-year old Howie died Friday morning of neuroblastoma.  I stood in line at Anthropologie, trying to score a deal on Black Friday and get out of the hospital for a few hours.  Out of habit, I pulled out my phone as I waited.  There was Pam’s text, “Howie died.”  I gasped out loud.  The phone went black and I fumbled to see if it said what I thought I just read.  Suspended in the swirl of shopping mania, the world seemed silent as I saw arms loaded with clothes and faces considering Christmas gifts.  There on the hill, the world went black, went silent.  Forever the cheer and celebrations of this season will be punctured through with ripping grief for that family.  The fight is done.  There is nothing more left to do.  He is gone, gone.  His eyes will never again light up.  His sweet voice will never again utter, Mommy.  His father will never again gather him up in his arms.  The warmth of his neck is lost.

My mind apprehends the fact of his death, but my whole self struggles to take it in.  His death declares the possibility of Allistaire’s death.  They are no different from me.  They are ordinary people who were suddenly thrust upon this path, just as we have been.  I sit here in the same spot in Starbucks that I have countless times before.  I recall that conversation a year and a half ago when Dr. Pollard said we could be done.  We didn’t have to try more chemo.  We could bring her home.  Bring her home to die?!  I could hardly breathe.  I could not stop gasping, trying to get up to the surface for air.  I felt myself going down into the dark waters.

Yesterday was Thanksgiving.  It really was a lovely day.  In our small room we enjoyed such pleasures as one another’s company, bright afternoon light, a football game and the incredible provision of an amazing Thanksgiving dinner.  Julie and Jeff, whose son Zach died last January of AML after his third transplant, cooked us and two other families a feast complete with homemade ham, turkey, gravy, yams, mashed potatoes, green beans, pinto beans, spinach with bacon, cranberry sauce, butter, rolls, pumpkin pie and whip cream, pecan pie, cherry pie, apple pie and cupcakes.  Out of their sorrow, on their first Thanksgiving without Zach, they cared for three families trapped inside the hospital as our three children fight against AML.

Allistaire was also blessed on Thanksgiving day with the gift of her 40th transfusion of red blood cells.  On Sunday, she had her 27th transfusion of platelets.  On the evening of her very first transfusion of red blood, on December 1, 2011, her hematocrit was 9.  The doctor later said she would have lived 2-3 more days with a red blood level that low.  That transfusion saved her life, just as each one since has given her the chance to persevere and fight against her swallowing cancer.  So thank you to each of you who have given of your time and endured a wee bit of pain, to sustain Allistaire’s life, and those in grave need like her.

Thanksgiving marked her third day of her ANC (Absolute Neutrophil Count) hitting zero.  It was also the second day of zero blasts.  The blasts returned last week in low numbers (18, 10, 6, 18).  We were so thankful on Wednesday when they finally hit zero.   When that first day of 18 blasts showed up, I again felt that shaking terror, that suffocating clamp on my throat.  Why God, why?  Why do you have to do this?  Why do you have to let terror strike again and again?  Can’t you just give me a break?  I barely felt settled in the hospital and back in this life when I was ruthlessly slammed up against the wall, with tip of knife pressed up against my throat.  Will I believe God?  Will I trust Him?  Will I rest in Him?  I’m up against the wall and my heart is pounding, my breath is strangled and the world tilts hard.  Will I believe?  Is God really good?  Because man this doesn’t look good.  There is nothing good about this.  My whole view is flooded with brokenness.

Every time I wait for test results, every time bad news is delivered once again, I am given opportunity.  The Word of God calls me to give thanks, regardless of the circumstances.  How?  What is there here in this mess to possibly give thanks for?  The Lord offends by His command to give thanks when the whole world turns black, turns silent and death swallows.  How do I possibly give thanks?  Resisting thanks drives further still the question out of the corner of my eye, is He good?  Am I actually some crazy lady brain washed to believe a whole load of crazy?

The waves pressing cold against my face and breath sputtered with swamping water.  Down, cold, dark, arms flailing, chest straining, burning.  Fighting for surface.  Whole body fighting.  The tipping point is near, the temptation to yield and slip silent into that cold deep dark where all thrash is done.  Sometimes I don’t want to have to fight to see the Lord.  Sometimes I weary and just wish for some way to walk away and never turn around.  But what is there out there for me?  The desolation of life outside of God is a complete aloneness.  Sometimes the dullness of a simple life where eyes stay put on earthly plane appeals.  Eat. Drink. Sleep. Work. Repeat.  Fancy collection of elements that eventually gave rise to consciousness, but really it’s all just biology – love, hope, religion – just biology.  That’s what I’m told.  Every inclination of my heart is simply tied back to survival of the fittest.  This love, this hope, this searching for God is merely impressive operations of a brain that innately yearns for the species to survive.

But I would have to will myself to blindness.  Because when I look up and look out and look in, when I scan all that I perceive with finite eyes and mind, I see that there is so much more.  There is SO much that defies my comprehension.  I went and saw The Theory of Everything last week.  It’s the true story of Stephen Hawking and his pursuit to understand time and it’s place in physics, in the universe.  Sten and I saw Interstellar yesterday.  It’s a wild movie about traveling through a worm whole, passing from our galaxy into another and the mysteries of black holes, mysteries that ignited the imagination and brilliance of Stephen Hawking.  In talking with a fellow mom the other day, she mentioned the Higgs Boson Particle.  Look it up.  You will begin a journey that unveils a world where time bends and there are realms upon realms of reality that completely boggle the mind.  We are SO small in the universe!  Our minds so finite.

So when I feel the tip of that knife pressing up against my pale neck, threatening to burst through and rip out my life force, snarling to tear me apart, I look up.  I look out.  I fix my eyes on the Lord, my lifeline in these ragged waters.  I place my hope in an infinite being who is beyond and outside of time – a being who makes audacious claims about what He has done and what He will do.  I look at finite flesh and flower and sky and I see we humans who are absolutely discontent to live as though this is all there is and I am convinced that in as much as I can know anything, I know the Lord is there, orchestrating my days, ordaining the life and death of cells in Allistaire’s flesh.  The Higgs Boson Particle is not mystery to God.  It is His delight.

In Ann Voskamp’s book, 1000 Gifts, she gives a compelling case for us to give thanks.  She challenges herself, and thus the reader, to be on the hunt for all of God’s gifts – all of them, and to name them and in so doing, to stake claim to them, to possess them more fully.  She strives to not let life pass her by but to dwell fully in the present and soak up all the bounty that exists.  But she dares to go further, she dares to take God at His word when He tells us to give thanks in all circumstances.  Get down low, eyes wide, scanning, scanning – where is the gift?  Where is the bounty in the sorrow, in the ripping times, in the dark, in the silence, when death swallows?  I can never do her work justice in this short space, but if I might summarize her work by saying that in practicing the habit of giving thanks daily, hourly, moment by movement, we gain eyes able to see the bounty in the times that at first appear as only ravishings, as only loss and desolation.  She refers to these brutal times, when we can still be on the look out for God’s good, as “seeing through to God places.”  That is the point of giving thanks – giving thanks enables us to see God.  And to see God is to have fullest of life, fullest of joy, fullest hope for fullest redemption.  To strive to give thanks stops my view from being swamped by sorrow and gives me eyes of hope – hope that this right here, right now, this is not all there is.  There is SO much more!  The SO much more enables me to dwell fully in the present – I am more able to take in the whole view – not just a view saturated by death and disease and threat of loss and present loss – there are all these AND there is more.  The loss is wrapped up within the fuller view of life in God.

I wish to leave you a few quotes from Ann’s book to give you a taste of her dare to give thanks at all times.  God has used His work in her life and her words to spur me on, to give further evidence, to offer support to what I have seen Him do in my own life.  She is my sister in Christ and I am humbled to have been so blessed by her yearning for Him and His faithfulness in her life.

“You murmur the question soundlessly. No one hears. Can there be a good God? A God who graces with good gifts when a crib lies empty through long nights, and bugs burrow through coffins? Where is God, really? How can He be good when babies die, and marriages implode, and dreams blow away, dust in the wind? Where is grace bestowed when cancer gnaws and loneliness aches and nameless places in us soundlessly die, break off without reason, erode away. Where hides this joy of the Lord, this God who fills the earth with good things, and how do I fully live when life is full of hurt? How do I wake up to joy and grace and beauty and all that is the fullest life when I must stay numb to losses and crushed dreams and all that empties me out?”

“Is this the toxic air of the world, this atmosphere we inhale, burning into our lungs, this No, God? No, God, we won’t take what You give. No, God, Your plans are a gutted, bleeding mess and I didn’t sign up for this and You really thought I’d go for this? No, God, this is ugly and this is a mess and can’t You get anything right and just haul all this pain out of here and I’ll take it from here, thanks. And God? Thanks for nothing.”

“And I moan that God has ripped away what I wanted. No, what I needed. Though I can hardly whisper it, I live as though He stole what I consider rightly mine; happiest children, marriage of unending bliss, long, content, death-defying days. I look in the mirror and am fearlessly blunt – what I have, who I am, where I am, how I am, what I’ve got – this simply isn’t enough. That forked tongue darts and daily I live the doubt, look at my reflection, and ask: Does God really love me? If He truly, deeply loves me, why does He withhold that which I believe will fully nourish me? Why do I live in this sense of rejection, of less than, of pain? Does He not want me to be happy?”

“I wonder if the rent in the canvas of our life backdrop, the losses that puncture our world, our own emptiness, might actually become the places to see. To see through to God. That that which tears open our souls, those holes that splatter our sight, may actually become the thin, open places to see through the mess of this place to the heart-aching beauty beyond. To Him. To the God whom we endlessly crave. But how? How do we choose to allow the holes to become seeing-through-to-God places? To more-God places? How do I give up resentment for gratitude, gnawing anger for spilling joy? Self-focus for God communion. To fully live – to live full of grace and joy and all that is beauty eternal. It is possible, wildly. I now see and testify. So this story – my story. A dare to live an emptier, fuller life.”

As for sweet Allistaire, she is doing relatively well.  Our life circles around meals and sleep.  Each meal seems to take about 2 hours of relentless effort to coach in bite after bite.  She has to drink 44 oz of fluid a day to remain unhooked from her IV pole, which she has managed to do every day since coming off of chemo and IV Zofran (for nausea).  Our goals are simple – protect against infection with baths, chlorhexidine wipes, ceaseless hand washing and Purell, keep her hydrated to help her kidneys and keep her weight up.  Her ANC remains zero and she continues to get transfusions as needed in this time of decimated marrow.  Today she will get another transfusion of platelets.

The saddest development has been that due to her being in contact isolation for VRE, she is not allowed to have any visitors under 10 years old, which has meant that now even her cousins are barred from visiting.  I was so, so sad when the Infectious Disease doc came by to enforce the rule.  The upside is that Solveig was here for five days and the two wild cat girlies had a great time together.  It was hard to see Solveig leave this morning.  It’s also been great having Sten here for the past week.  He has stayed at the hospital each night and taken on the bulk of meal-time duties.  It has been a great break for me.  Sten’s folks watched Allistaire and Solveig stayed with my parents so Sten and I could have some time together. We are truly indebted to our parents for their faithful, generous love.  Both sets of our parents have been unflagging in their support through this now three-year journey.

It is surreal to realize that it was three years ago, on December 1, 2011, that it first became clear that something was drastically wrong with Allistaire.  I remember when she was diagnosed just a week later with AML, being told that she would have five hard rounds of chemo with most of that time spent in the hospital.  We were utterly overwhelmed at the thought of going through that.  Little did we know how much more would come.  The Lord said to be expectant.  I could not have guessed how He would move in my heart and be at work in our lives.  I could never have chosen these three years and yet, given the chance, I don’t think I would ask to undo them.  The good has been other-worldly, it counts for little in earthly currency, and yet it is an enduring good and an exponential bounty that is not yet done unfurling.  Thank you Father.  Thank you for these past three years, for all your abundant provision, tangible and intangible.  I look ahead down the road and it is easy to fear what lies down that path.  Some times I want to turn away.  Rather, I dare to fix my eyes on you and give thanks, even as the knife threatens.

Here are a few videos of the little miss Allistaire. I needed Sten, my techy fellow, to help me remember how to put videos on the blog.  The first is from last week, the second is from March 2012, the only round of Allistaire’s first treatment that she was able to come home for a few weeks. The next two are post transplant (summer 2013) when she was a huge chubster on steroids.  The last one is from last night.

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Dread, Hope, Dread


IMG_1612I know I should go to bed but I know that when I do, tomorrow will hasten its coming.  So fast it will fly and then we will have arrived on the threshold of that day we must enter the hospital.  I strain to slow my steps as though I can with force of will prevent the series of events which will come, which must come to bring us to Wednesday morning.  The halls are bright with light and the colors, blue, orange, green are meant to be cheery, modern.  But to a prison cell it feels we are being sent.  And the dread is not because of the annoyance of people perpetually coming and going or the fact that we are closed into a tiny space where no normal advances of life can take place, where we are stunted in 4 hour cycles of vitals.  No, that is endurable, that is bearable.  The dread, though weighty, sinks slow and silent, settling firmly in my heart, in my gut.  Will she ever leave again?  Will the sweet small child who walks through those doors ever, ever return?  I KNOW what happens in that place.  I know what terrors lurk.  I feel as though I’m walking my child to the gallows.  I’m doing this, in her innocence, I lead her into that place.  But I have no other choice.  I must hand her over.  It’s breaking my heart to know what will soon be done to her, again.  How can she endure?  She is so small.  And she must do it all over again for a second time.  My heart tears with screams – how can I be forced to choose between these poisons and destroyers of chemotherapy and radiation, and her death?  Neither are good!  I despise being crammed in this wretched crack of murderous choices.

But I yield.  I take her by her small, warm hand and I will lead her in.  It does not take long in the fight against cancer to know so clearly how each step forward is gift, pure, free, underserved, gift.  For you see those falling away around you and you know how very fortunate you are.  The sun has shone upon you, you are the blessed and you have absolutely no room to grumble or complain – for you still stand.  I don’t know what the days ahead may hold.  I don’t know how long we will be locked in that place or if ever, ever my beloved Allistaire will come out, marred, but alive and radiant.

This morning we went to clinic and Allistaire had labs drawn, then we saw the nurse practitioner.  At the end of the appointment we had the joy of having Dr. Gardner come by as well.  She was able to relay the discussion regarding Allistaire that the Hem/Onc and transplant doctors had this past Thursday.  They agreed to prioritize a clinical trial transplant whose aim is to reduce Graft Versus Host Disease (GVHD).  Based on Allistaire’s HLA (Human Leukocyte Antigen) typing, they are optimistic that they will be able to find a 10 out of 10 matched, unrelated donor that will fulfill the protocol’s requirements.  The trial is testing the efficacy of removing “naive T cells” from the donor cells and returning the remaining cells to the patient, leaving the memory T cells.  For those new to bone marrow transplants, the idea is not only that you myeloblate (utterly destroy) the patient’s marrow in the hope that you also destroy the cancerous cells, but that the real beauty of transplant is mythical GVL (Graft Versus Leukemia).  When you receive the infusion of the new donor cells, these cells enter the patient’s body and sees their body as foreign.  The immune system is created to search out and destroy what is foreign and unwelcome.  This means that both healthy and cancerous cells may be attacked.  The attach of healthy cells is known as GVHD and the attack against cancerous cells in the case of leukemia is known as GVL.  So this transplant is designed to remove the T cells that indiscriminately destroy and leave the rest.  While I love the thought of less GVHD, I asked Dr. Gardner with concern, whether or not such a transplant would produce diminished GVL.  With a smile, she said, no, they don’t think so, they have had very promising results.

Another upside of this transplant, is that with diminished risk of GVHD, there is a greater likelihood that Allistaire would be in a better position to receive the infusion of the modified TCRs (T cell Receptor).  When you have GVHD, one may need to go on immune suppressants, often steroids, to reduce the immune response of the T cells.  The most common places under attack are the skin, liver and gut.  It would make no sense for Allistaire to receive fancy, modified T cells only to suppress them with steroids, rendering them ineffective.

Perhaps the greatest ray of hope, came with the words, “transplant without remission.”  It sounds like the transplant doctors are still willing to go ahead with this transplant, even if Allistaire is not in remission.  To qualify for the trial, Allistaire would have to have 10,000 or less circulating peripheral blasts, a 10 out of 10 matched, unrelated donor, and generally be in good condition (organs functioning well, no out of control infection, etc.).  Dr. Bleakley, the principal investigator for the trial at Fred Hutch, does not view Allistaire’s chloromas (solid leukemia outside of marrow), as disqualifiers.  Of course it would still be optimal for these spots to be gone or substantially so, but their presence would not close the door for her.  It may mean, however, that she would need focalized radiation to these locations in addition to TBI (Total Body Irradiation).

Suddenly, the yellow walls of the room felt fitting for the hope swelling in my chest.  There may be a way through.  There is a ray of hope.  That is what I needed to face an indefinite inpatient stay.  Knowing there is hope, spurs one onto fight.  Before this conversation with Dr. Gardner, it just seemed like this was all doomed to fail which made it all the harder to willingly walk into that lock-down prison.  Good fortune continued with Allistaire drawing her first person and getting bumped up in the schedule for her “back poke,” where they test her spinal fluid for leukemia and inject a chemo, cytarabine.

Allistaire had just been wheeled into the recovery room where they practically kick you out 5 minutes after a procedure, when our nurse practitioner walked in with the lab results.  In the appointment we’d had everything back with the exception of the ANC (Absolute Neutrophil Count) which always takes longer.  All her labs had looked great, despite her falling blood counts which are naturally to be expected because of the advance of her leukemia and the chemotherapy.  The ANC was fine, 1022.

The absolute smack in the face was the presence of an Absolute Blast Count – 68.  Blasts are immature cells and they can be completely normal depending on their location and number.  Blasts in the peripheral blood, and of more than just a few, are most likely leukemic.  There was that wretched number declaring the very real increase of her cancer, such that it has pushed out cancer cells into the bloodstream, and this, even in the face of seven days of chemo.  Now, Decitabine is not a hard-core chemo, is known to take a while to be effective and is not what we are relying on to get her cancer into remission.  Yet, it makes you want to throw up on the spot.  Blasts are the harbinger of things grossly out of control in the marrow.  Their presence stings and burns the mind.  Blasts were the evidence that every round of chemo prior to her first transplant had failed.  It is not an overstatement to say that they strike terror.

All the hope I had known in that yellow room thirty minutes before, seemed to have been violently suctioned away.  I felt panic and desperate need to talk to Dr. Gardner about this most wretched development.  She appeared shortly and said in short, “I don’t want to blow it off, but it does not add to my level of concern.  It does not surprise me and it doesn’t change our plan.”  She affirmed all of my assertions regarding Decitabine that I had quickly thrown together in my mind.  Well, I would have felt a lot more free-spirited joy had those blasts never shown their ugly faces, but all hope is not lost.

For now it is late, but I have one last morning to sleep in and snuggle with my girl, just the two of us.  No lights, no pumps or beeping sounds, no interruptions for vitals.  One more morning and day of seeming normalcy.

For more information on the transplant trial, click the link below.  The trial for the modified TCRs is below that.

Selective Depletion of CD45RA+T Cells From Allogeneic Peripheral Blood Stem Cell Grafts for the Prevention of GVHD

Laboratory-Treated T Cells in Treating Patients With High-Risk Relapsed Acute Myeloid Leukemia, Myelodysplastic Syndrome, or Chronic Myelogenous Leukemia Previously Treated With Donor Stem Cell Transplant

Explanation of TCRs from the Juno Therapeutics Website

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Press On


IMG_1435This is my 200th post on this blog.  The 200th time I’ve sat down before these black keys, trying to look back over the days and hours, to look into myself and ask what I feel, what have been the colors of this day, what was the angle of light and shadow.  What were the moments that seemed to sum up the experience, this strange realm in which I dwell.  I look up and out, expecting like a Montana sky to see far, to feel the refreshing of expanse, to relish in the way it dwarfs me.  Somehow to feel so small seems to satisfy, perhaps because down deep I am so keenly aware of my smallness, my finiteness.  But the sky, oh sky, whether by day with extravagant drape of blue or stormy steel of cloud underbellies, or that singing silence of stars – sky at dark – the sky gives my tiny self context.  I am swept up within and so it is when I lift my eyes to The Lord.

Allistaire was still asleep in the recovery room after anesthesia for her PET/CT scan and so I slipped out to use the bathroom.  Through the window of another room, I caught a glimpse of a woman, head turned far to the side and eyes closed with an expression of pain.  Then came the cry, that distinctive cry of a newborn, clutched in her arms as the two nurses surrounded, attempting a blood draw or an IV.  I remember holding Solveig when that first needle came and then another and another, to vaccinate her against diseases that cripple and kill if not protected against.  My tears ran hot as I pressed her body against my chest, as she flexed in pain.  Brokenness, we are born broken, vulnerable.

We were to meet Dr. Gardner along with Ashlei our social worker and a member of the PAC  team (Pediatric Advanced Care Team) up on Forrest 7.  Forrest 7 is the Cancer and Blood Disorder Unit for children under 13.  The older kids are one floor up.  As I walked down that long white corridor to the Unit, memory upon memory threatened to swamp me, like dark waves pressing up the sides of a little dingy.  I looked out the window as we passed, the leaves turning, but the same scene regardless of the season.  The smell hit me next and I dreaded walking through that door.  When my eyes first opened this morning as weak light entered the room at Ron Don, I wished to somehow prevent the coming of this day, as though eyelids open would welcome in a torrent of sorrow.  To walk through that door was to submit to what was coming, to acknowledge the reality of all this.  For I have already walked this road, I know it intimately, all its contours and paths.  Today felt like a sentencing, knowing we would sit across the table from Allistaire’s doctor and be handed the options set up against the realities of her disease.  It must be the exaggerated difference of what I see with my eyes when I look at her and what all these tests declare, that makes swallowing what’s to come so very difficult.  It is like putting one foot in front of the other, willing yourself to hand yourself over to be thrown in the lion’s den.  You have been there before and only narrowly escaped, but with your flesh tattered and raw.  The wounds have really only begun to heal and you are thrust back into that place.

I know the trees will soon lose all of their leaves and we have months ahead of us of dark grey and cold wet, this Washington winter. Immediately sun on snow and the crisp, invigorating freshness of winter in Montana rushes into my view and I grieve knowing this little girl who talked about skiing all summer will most assuredly not ski this season, if ever again.  There are a thousand wounds of what will not be that slash and slash.  I circle and circle these sorrows, perhaps because they are easier to bear than that center of deep black, that greatest loss.  My world has constricted once again.  So narrow is the focus, yet so looming.  Again the mission of getting her into remission in order to do another transplant.  While her bone marrow only shows 0.9% leukemia, the biopsy of her lymph node and bone both confirmed leukemic involvement outside of her marrow.  They were unable to do Flow Cytometry on the bone marrow aspirate of her arm because the marrow was too fibrotic, but the old school method of using stains confirmed the presence of leukemia cells.  The PET/CT scan also revealed a broiling terror no eye could have guessed.  Outside of her marrow, the PET scan revealed leukemia in her right proximal humerus, right axillary lymph node, left distal femur, anterior compartment of bilateral thighs and in her left hand.  There is also a lymph node in her left groin that may be leukemic, it is not clear.

It’s her little sweet left hand that hurts the worst.  Somehow looking at that small hand, knowing what is eating away at it inside, oh, it feels like it’s stealing away my child, this girl who is so full of life.  And when the sobs come it seems my cranium cannot contain the agony of losing her, the pressure unrelenting behind my eyes.  And there are the words I know would come, must come.  “We will give her chemotherapy and while there is a trial for transplant without remission she may be eligible for, we will have to discuss the worth of that.”  All the doctors agree that if she “progresses,” if her leukemia becomes worse with chemo than it will progress with transplant.  So we forge ahead with chemo, praying this time it works.  Those three rounds of failed attempts last time she relapsed are seared into my mind.  I fear nothing will be able to stop this thing.  I fear watching the life vanish from her eyes.

We decided with the directing of the doctors to proceed with a chemo regimen called DMEC which is a wild combination of Decitabine, Mitoxantrone (also known as Blue Thunder), Etoposide and Cytarabine.  She has actually had all of these chemos before but at different times and in different combinations.  On Thursday or Friday she will have her third Hickman catheter installed and then she will be given 7 days of Decitabine, which can be done at the outpatient Hem/Onc clinic.  She will be then admitted to the inpatient unit and be given infusions of the other three chemos.  These are power house chemos which also are known to have the high potential to weaken the heart.  Allistaire has had weakening and dilation of her heart before resulting from chemo and has been on Enalapril for about a year and half to help it recover.  Thankfully, it is currently in really good condition, but this is the organ we most pray will be spared. A weak or damaged heart or other organs may close the door to transplant.  This combination of chemos is currently under study but has shown such promising results that the doctors here are willing to try it on Allistaire despite it not being a standard protocol.  Somehow the Decitabine changes the leukemia cells in a way that “primes” them to be more vulnerable to the destructive powers of the other chemos.  Once she is admitted for the remaining three chemos, it will be a standard 28 day cycle where her blood counts drop, with her ANC (Absolute Neutrophil Count) falling to zero, and then waiting for them to recover.  Once her ANC reaches 200 again, another Bone Marrow Aspirate and probably PET/CT will be conducted to determine the effectiveness of treatment.

Because Allistaire has extramedullary disease (leukemia outside of the marrow), it is necessary to give her systemic chemo prior to a transplant, even though the percentage within her marrow is currently so low.  If the DMEC round fails, there are still a few other options.  The trial in Denver for the DOT1L would still be an option, assuming her marrow is over 10%.  They are also conducting a study with the drug Panobinastat her at Children’s that they could try.  The other advantage of giving Allistaire chemo before transplant is that it takes a bit of time to find a matched bone marrow donor and arrange the actual donation.  This is not a quick turn around like using cord blood would be.  However, they will also be looking for a cord blood match and reserving that if it became needed.  I don’t have a lot of details on the actual transplant options because we are simply not there yet, though it sounds like we will be meeting with the transplant docs at SCCA relatively soon to review what may be available to her.  One of the greatest advantages Allistaire has is that in her clinical trial transplant last June 2013, she did not have TBI (Total Body Irradiation).  This is radiation of the entire body and can only be given once in a lifetime given its very detrimental cognitive and growth side effects.  Because she hasn’t had it before actually gives her more options.  It is possible that if she were able to move forward with a transplant that she could participate in a trial using modified T-cells in a way that differs from the T-cell therapy that children with ALL (Acute Lymphoblastic Leukemia) receive.  She is eligible based on her HLA typing but she is under the weight requirement of 30kg.  She is only 17.3kg but they are willing to consider whether or not they can modify the trial for her.  The weight requirement is due to the amount of blood they need to take for all of the tests.  If you want to be inspired by the wonders of current cancer research, check out the Juno Therapeutics website that explains the TCR therapy that may benefit Allistaire.  Be sure to check out the mad scientist, Dr. Phil Greenburg, who is leading this research and watch the video that shows the modified T-cells obliterating cancer cells.  It’ll make you want to stand up and cheer and maybe weep for the beauty of creation and science, being the study of what our Lord made.

The chimerism test on Allistaire’s marrow, which looks at what percentage of her marrow is her donor (stem cells from transplant) and what percentage is herself (the cancer cells), showed that she is approximately 96% donor and 4% host/her own cancer cells.  It’s hard to see this first glimpse of her donor cells losing their ground.  But to you, most honored and cherished of women, to you, her donor out there across the globe somewhere in Europe, know this, though your cells may not prevail in my daughter’s flesh, it is because of your incredibly generosity in giving of your own flesh that my child has had life for the past sixteen months.  And you have given all who know and love Allistaire precious time with her that would certainly not have been.  You have allowed countless memories and joys to pile up.  You have given my sweet girl, Solveig, memories of her sister that her younger mind might never have held on to.  Thank you.  We are forever and ever indebted to you and I pray God may bless you for your sacrificial giving.  And if there are any of you out there who have yet to join the Bone Marrow Registry, I implore you to consider offering up yourself to be the source of life for another person desperate for a way through, hopeful for life.  It is so easy to register.  Just go to Be The Match.org and answer a few questions and they will send a little kit in the mail for you to swab your cheek and get a few cells that will give them preliminary information about your HLA type.  While Be The Match is the primary registry in the United States, all of the registries around the world are linked, which means your cells could be a gift to someone on the far reaches of the globe, someone you cannot even imagine but is ever so real.

My life has dwindled down to this constricted place, this place of fight, this place where all energy is funneled into the battle to save a body, because it is the dwelling place of a spirit so dearly loved.  As has been true before, there are dark walls looming, surrounding, overwhelming and threatening.  The view on our lives as we knew it has been slammed shut.  In only a few days Allistaire and I will go back into that physical prison of the hospital where she cannot even leave her room and I must leave the Unit altogether if I do leave her room.  Every time I need to have food heated up, I will have to ask the nurse for help.  Countless strangers will come and go in our small space.  A message on the phone in our Ron Don room asks us to fill out paperwork for Adopt-A-Family if we are going to be here over Christmas.  I know we will be and it is like so many pains that you cannot stop before they have torn into your heart, severing.  The wounds come but I know I will not be destroyed.  I recall to mind the treasures the Lord a long time ago buried in my heart.  In the days of those first surrounding walls, I beat my fists in fury against them and cried out to God to help me find a way through or over or under them.  I used all of my finite might to war against them.  And then my sweet, patient God told me to turn around and fix my eyes on Him, on Christ, the author and perfecter of my faith.  He helped me to have eyes to see that He is my dwelling place, He is my Sabbath rest, He is my very way, my very life.  He enabled me to see that my boundary lines had indeed fallen in pleasant places and then with slightest of breath He caused those walls to simply tumble down.  He blew and the waters of the Red Sea parted and He brought the insurmountable walls in my life crashing down.  The Lord has been good to me.

So I choose to stand with those incredible three men of faith.  I stand with Shadrach, Meshach and Abednego who knew the Lord could save them from the fire but stood with resolute declaration, that even if He did not, they would not bow down to any other God, because they knew that regardless of the outcome, their God was the one true God.  I walk into the fire knowing God can preserve the life of my child, and even if He does not, He is my God and I will never stop worshipping Him.  I love you Father.  I love you and I am afraid.  My heart threatens to fail within me.  Hold me up.  Take my life.  I lay it down before you.  I know I will see the goodness of the Lord in the land of the living.IMG_1379 IMG_1385 IMG_1401 IMG_1406 IMG_1408 IMG_1410 IMG_1415 IMG_1428 IMG_1429 IMG_1430 IMG_1431IMG_1399

Fact Gathering


IMG_1339Allistiare is entranced watching a Tinkerbell movie on her iPad as we await the time for her surgery.  There are happy little woodland scenes painted on plywood – scenes of hills and trees with sweet birds, deer, little rabbits peeking out everywhere – a place to allow your mind to be transported to.  Soon however, it will be time for her to go back to the OR and be sedated for the third time this week.  Today the Interventional Radiologist will go in and biopsy her right humerus bone, the marrow and a lymph node in that arm pit.  The MRI from yesterday revealed a slightly enlarged lymph node (about 1 1/2 cm) and the view of the bone was inconclusive.  According to the radiologist, it looks like it could be a leukemic infiltrate where the bone marrow is pushing through the bone – they call it a lesion, or it could be osteomyelitis which is an infection in the bone.

The bone marrow aspirate taken from her arm will be tested by Flow Cytometry for a percentage of leukemia.  If it were to be 10% or greater, this test would qualify her for the Denver trial.  I am still unclear on what will happen if it is less than that.  She is scheduled for a PET/CT scan next Tuesday morning to check for any other locations in her body that might show the leukemia.  I suppose there could be more biopsies taken if something showed up with this scan but that hasn’t been discussed at this point.  For now we will have to go through surgery and wait for bone marrow results which we would hopefully get by the end of Friday.  One of my biggest questions at this point is what we will do if there are no biopsies yielding a percentage high enough to qualify her for the trial.  A part of the confusion lies in the fact that the remission required for transplant is defined as having 5% or less disease.  At this point, Allistaire has less than 5%.  Of course, who knows how fast her leukemia is moving but for now she is known to have 0.9%.  I asked for clarification from Dr. Gardner about my understanding that the necessity of being in remission prior to transplant is to remove “bulk” disease.  She affirmed this to be true.  Transplant is not good at clearing out large quantities of disease, thus the need for the low percentage identified in remission.  So, this leads to the question of why we can’t just condition her now and take her to transplant.  These are the strange terms of this world: “condition,” which sounds so gentle and nice is actually the brutal chemo and radiation that obliterates the present marrow.  They “take” her to transplant where she is “rescued,” by the infusion of the donor bone marrow or stem cells.  I do know that Dr. Gardner has reopened the search for a bone marrow donor – whether this ends of being cord blood or a match with an actual person’s marrow, I don’t know.  It will all depend on the details of the transplant they can give her.  But the process has begun.

For now then, we wake up each day with the shocking realization that this is all really happening.  We must simply walk forward through each step and make the most of it along the way.  Today Allistaire has surgery and we lie low for the rest of the day while she  recovers.  Tomorrow she will have an echocardiogram to check her heart.  All of Allistaire’s organs have to be functioning well to endure what is ahead.  Thankfully, as of last check in June, her heart was doing excellent.  Next Tuesday is the PET/CT scan.  I’m sure intermixed in there will be a number of phone calls with docs and perhaps new tests scheduled.

It is sort of mind-blowing to think of life one week ago.  I could not have anticipated this wild turn of events and yet, this is exactly how it goes in the world of pediatric cancer.  This is actually not one bit surprising.  When people have asked me countless times if Allistaire is okay, is she doing well, I have never been able to come up with an answer that seems suitable, or at least that is satisfying to both myself and the one asking.  Understandably, we all have wanted to and have rejoiced in seeing a little girl who seems to be thriving, who is bursting with life.  But for me there is always an underlying edge of “I just don’t know.”  I think the term “NED,” or “No Evidence of Disease,” is best.  It sort of sums up the reality – the victory and also the humility of knowing cancer can seem gone forever, when it is merely dormant, lying in wait to raise its ugly head again.  I think back over the past year.  This day, exactly one year ago, Allistaire and I got in the car and drove home after being exiled to Seattle for eight months.  As of September 20, 2013, she was considered in remission.  Three or four bone marrow tests since then have shown 0% leukemia.  But it’s still there.  This cancer has never truly left in these three years.  So sometime between her spectacular test results in June to that first evidence of arm pain at the beginning of September, somewhere in that small space of three months, her cancer was on the move, rising up.

Tomorrow is Halloween, a day both Solveig and Allistaire were greatly looking forward to.  They were both going to be mermaids.  I won’t be there to help Solveig dress up and admire her aquatic beauty.  I won’t get the joy of seeing two happy tailed girls skipping down the sidewalk of Main St. in anticipation of more delights.  When asked, Allistaire says she will be a mermaid princess named Ariel.  There are some activities at Ron Don tomorrow afternoon that she can participate in, but oh, oh, how I remember Halloween a year ago.  A year ago was a time of tentative hope.  As our nurse said in those days, “perhaps this is a fragile remission.”  And really, we’ve had more than we might have had, more than we were told we would likely have.  In August of 2013 we were told she has a 5% chance or less and probably won’t make it more than 6 months, her only chance for survival is another transplant.  And here we are, fourteen months later, hoping now for a second transplant.  We’ve had all this wondrous time with her and all the while her body has been healing and growing stronger.  In light of this, we have been given so much, so much more than we might have had.  And yet, oh how I want more of her.  I want a lifetime with her.

In the farthest corner of my mind is tucked, hidden away, this one most frightening thought.  It is a thought, that with stupid superstition, I hate to say out loud.  I try never to look at it.  I want to pretend it has never been shown to me.  But there in my periphery it remains.  If Allistaire dies, I will be at long last, standing on the other side of that terrible divide.  I will have been cast into a thick darkness unlike any I have yet known.  But I know that in this darkness are the faces and hearts of others whose lives have forever crossed into the realm where death has become real.  They know, in a way that I can only imagine, the finality of death. I have seen it from still so relatively far away, because it seems, until it cuts into the deepest core of your life, it is still intangible in it’s most severe of qualities.  Becca dwells there.  She awakes each morning with the gut wrenching reminder that Marleigh is gone, gone, never to return to this life.  And Nancy, sweet Nancy, she will never again hear her husband’s voice.  April has lost her baby girl Ruby and Kate her teenage Ruby.  Janet grieves that Sarah will never dance again.  Mario, Jaxon, Pantpreet, Zach, Christian – all gone, but their parents remain.  I have seen the Lord and known His comfort in the darkness, in splintering sorrow, but no matter how bad it’s been, I still have my girl.  God needs some of His people to walk all the way down that road and to cross over that chasm that in that place they may know His comfort, they may cling to His promises, they may declare that they have seen the goodness of the Lord – in that place, the place where you can never again hold your child’s hand or look into their eyes or hear their laughter.  With all that is in me I want to flee from such a place.  But I know in my core, that submission to God for me, means yielding to His will, no matter the path, even if it leads there.  And I pray this, Father, if you at last bring me into that wilderness of overwhelming sorrow, meet me there, allow me to see your face, to hear your voice, hold me up, bind up my gaping wounds, comfort me with your Holy Spirit and bring me peace that is beyond comprehension.  Father enable me to be a comfort to those you put in my path across that traverse.  By the power of your Spirit, put words in my mouth to build up and be salve, be refreshing and hope.  Make my face radiant, may your light overflow to those around me.  Lord I call upon your name – be faithful to your promises, uphold the glory of your name.  “God is love,” this is what you claim about yourself.  Let your love be so clearly and mysteriously known by those who turn their faces to you.

It’s just after 5pm now and we’ve just gotten home from the hospital.  It was a very, long day.  A forty minute procedure equated to 7 hours in the hospital.  We are well acquainted with waiting.  I had plenty of time to check emails and texts and Facebook.  I am overwhelmed by the outpouring of love sent our way.  Thank you to you countless folk who have called out to God on our behalf and have asked others to do the same.  Thank you for your compassionate and generous hearts.

Many of you have asked how you can be of help, to let you know what we may need.  Because we are still gathering data about where Allistaire’s cancer stands, we don’t know how long we’ll be here in Seattle so I hope to give more specifics on ways to help in the upcoming week.  But I do know two things right now, in addition to praying, you can donate your blood.  Have you done that?  It is something so tangible and critical you can do to help Allistaire and other children and adults in her situation.  Her hematocrit has finally started to drop.  Today it was 35.2.  It is never that low.  The decent has begun.  Dr. Gardner actually wanted to put in her Hickman line during today’s surgery.  I said no way.  I can’t handle seeing those things yet.  I know she will need them, and probably soon, but oh they are just the most wretched sign of the reality of this all.  “Access.”  They call lines, “access.”  Some how it is nauseating to me.  They are wonderful inventions but I don’t want my child to need to be accessed!  Dr. Gardner graciously agreed to wait.  Anyway, back to the point.  Blood.  Let them stick a needle in your vein and draw out your life force.  If the thought terrifies you, good, let the fear sink into you and walk forward into it.  Face it.  Allow yourself one tiny ounce of her pain to be your pain.  If you live in Montana, you can connect to the United Blood Services website and set up an appointment in your local area.  If you are in the greater Seattle area, connect with Puget Sound Blood Center.

There is something else you can do.  If pediatric cancer is foreign to you, if it is a world you cannot imagine, watch the movie, “A Fault In Our Stars.”  It will give you an easy taste of Allistaire’s world.  If you are yet more courageous, watch the documentary, “A Lion in the House.”  This documentary follows the lives of about four or five children with cancer and their families.  This is a hard movie to watch, but it is an incredible opportunity to see into this uniquely beautiful and terrifying world.  If you’re interested in knowing more about what life is like at Seattle Children’s Hospital for kids with cancer, watch the recently televised program, “Conquering Childhood Cancer.”  I have chosen countless times to watch movies that many call hard and too sad.  I willfully put myself in the position to feel pain, to get a minute taste of the pain in the characters lives, because stories reflect life and life is full of ache.  It is so much more than sorrow, but being acquainted with the sorrow helps me to step one step closer to understanding and thus love.  I want to love my fellow-man.  Thank you for so abundantly loving us!IMG_1325 IMG_1327 IMG_1328 IMG_1333 IMG_1346 IMG_1352 IMG_1355 IMG_1356 IMG_1357 IMG_1361


I Will Still Love You When I Die


photo-42 photo-41 photo-40 photo-39I reached behind the seat, in the dark car and rubbed Allistaire’s leg.  “Are you okay Sweets?  Are you in pain?  What are you thinking?”  Her sweet little voice and tender eyes respond, “I will still love you when I die.”  I look over at Sten and see the glassy sheen of tears filling his eyes.  She was desperate for a new doll with a pretty dress.  Already, so fast, I am discovering it impossible to say no to the desires of a little girl who may not have much time left in this world.  When she pointed up to the top shelf and said she wanted the doll in the white dress, a ragged cry caught in my throat.  A doll in a wedding dress.  “She will never get married,” stood the stark statement in my mind.  We walked hand in hand back through the parking lot, my arm bobbing along with her joyous skips.  “Mommy, I’m learning to skip in gym,” she declared with triumph.  Immediately I saw in my mind her uniforms for school hanging in her closet.  She will probably never go back to school.  With certainty she will never, ever go back to preschool.  She only got to go to two of her dance classes and less than a handful of her swimming lessons.  I don’t know how to bear it.  No, she is not dead, not now.  But death is already coming to rob, to shred and tear and ravish.  I think of her room, of her closet with the walls covered in her school work.  She only counted to 10 for the first time the other day.  It will never matter if she can hold her scissors right or read.  It will not matter that her ovaries could never give her children.

Throughout this long day, Sten and I both so hoped, thought somehow there might be a way out of this.  It just seemed too awful.  We had literally just begun to taste of a real life all together.  For so long I silently berated myself for making her cancer such a big deal.  In my Bible Study discussion group, my every response seemed tied back to this agonizing battle.  It has consumed nearly everything in our lives.  It saturates every decision, every hope, every plan.  I fear I may be swallowed whole by it or torn bit by bit into thousands of tattered pieces.  I do not know how to bring this little girl home to die.  So many points of her life flash into my mind.  I remember so clearly sitting in my blue chair reading one evening.  I felt her move inside of me for the first time.  I was only 13 weeks pregnant.  I remember her so sweet adorable round head and beautiful cheeks.  She loves to snuggle in bed on Saturday mornings and no pleasure is greater than opening my eyes in the morning to see her bright blue eyes smiling back at me.  Lord help us.  Father help us.

Dr. Gardner called at 5:30 to say that she had called the pathologist.  It would be another 30-60 minutes.  They just had so many samples to run through.  She told me that the radiologist at Children’s who looked at Allistaire’s X-ray from Friday did not think it looked too abnormal.  We were not sure what that meant but stowed it away into our basket of hope.  We were in the toy store when Dr. Gardner called back.  There is .9% leukemia in her marrow.  Just shy of one percent cancer, but it doesn’t matter.  It doesn’t matter that 99% of her marrow is healthy.  There is present there a marred thing, a mutated ugliness that cannot be stopped and it will not stop until it is all there is and there will no longer be red blood cells to carry oxygen or platelets to bind up wounds or white blood cells to protect against the constant invaders of bacteria and virus and fungus.  I watch her play with the train set.  We have told her her sickness is back.  As I embrace her, she says she is sorry and then returns to the trains oblivious, utterly oblivious of what will likely come.

Allistaire’s leukemia is not a high enough percentage to qualify at this point for the DOT1L inhibitor trial.  She must have 10% or more to qualify.  Dr. Gardner says she will call us tomorrow after Allistaire’s MRI to talk about what’s next because at this point she doesn’t know.  She has already begun talking with Dr. Pollard who is now at the Barbara Bush Children’s Hospital in Main and will also be consulting with the transplant doctors.  I asked whether or not she could do the trial for transplant without remission that she did before, as I saw that it had reopened.  No, no it didn’t work before, so they do not allow you to do the same trial again.  And then she adds this, “if she does not get in remission, she will most likely not be offered any transplant.”  My heart nearly stops.  Remission.  Oh what an overwhelmingly hard goal.  And now I see.  If this DOT1L inhibitor does not work…there may be nothing after that.  Nothing.  Nothing but making the most of the time that is left.  This is where my whole being slams so hard against the wall.  How is it possible for me to give up?  How can I possibly every come to the point that we have nothing left to offer her?  Can you not see this girl?  This bright shining fiery flash of a girl?!  Tell me how can she be extinguished? How can I possibly stand by and watch that happen.  How can I ever bear the sound of silence in my house?  How will I walk past that room?  What will become of Solveig?  How can we love her well enough?

It is so surreal to watch people go about their life when your’s has just been absolutely cut through.  You hear people laughing and you see the blood seeping from your side and you feel yourself grow faint.

I feel decimated.  I feel flattened and torn.  Bewildered.  How do we keep going?  I mean, I know we will, somehow we will, but how? How do I walk forward without absolutely wasting away, skittering across the ground like a dried out husk.  What have the days behind me shown me?  “Lift Your Eyes.”  I feel so feeble, but this is my life-line.  This is my anchor.  I ask my God to help me lift my eyes to see Him.  Oh Father, give me eyes to see you.  Give me ears to hear your voice.  Help me to lean on the truth that you are the Ancient of Days.  You are the Alpha and the Omega the beginning and the end.  You hold all things together by the power of your will.  You are the creator God.  What is seen with my eyes is not all there is.  Let me not be deceived into believing that this is all there is.  Am I desperate for their to be something more?  There is the part of me that thinks that if this finite life is all there is, if I really just turn to dirt when I die, then let me die now.  Let me just be done with this life and this burden.  But I know in my core that there is a mystery of such magnificent beauty from which I cannot turn away.

My Father, who art in heaven.  Hallowed be thy name.  Thy kingdom come.  Thy will be done, on earth as it is in heaven.  And give me this day, thy daily bread.  And forgive me of my trespasses as I forgive those who trespass against me.  And lead me not into temptation, but deliver me from evil for thine is the kingdom, the power and the glory forever and ever, Amen.

I choose to look back over the years and seasons I have walked this life alongside my Christ.  He has been faithful to me.  He has laid in my palms treasures of understanding, more glorious than anything else I have known – in part because they embrace what is dear to me, they illuminate the true nature of what my life consists.  I love my children more.  I love my husband more.  I love the earth more.  I love my church more.  I love my flesh more.  I love the other spirits in my life, my friends, my family, the person at the check out, I love them all more.  Knowing God has enabled me to somehow both treasure my life more and more and also to hold it all with an open palm – to see it all as it is connected into Him.  This life of mine is not just about this small window of time.  This awful cancer that gnaws and destroys, it is but for a time. And scope, scale – these are some of the foundation stones that enable me to walk forward.  I am finite and it is natural for me to view my life from a finite perspective, but the eternal God is beckoning me to lift my eyes – to fix my eyes on Christ and to believe Him when He says there is so, so, so much more.  He promises to redeem.  He promises to resurrect.  He promises to wipe away every tear.  I come again to that passage of His word, worn with my pondering and hope:

2 Corinthians 4:16-18

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.