Tag Archives: Fred Hutch

Seven Years, Three Years, Seasons

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I know it is redundant, I’ve spoken of it before, but there are just those points about which your mind continues to circle back to, the strange attractor.  In the afternoon of Friday, March 11, 2011, a 9.0 magnitude earthquake occurred, centered “about 45 miles east of Tohoku, Japan, at a depth of about 15 miles below the surface.” “The quake occurred as the Earth’s crust ruptured along an area about 250 miles long by 100 miles wide, as tectonic plates slipped more than 18 meters, said Shengzao Chen, a USGS geophysicist.”  The result?  The earthquake moved the main island of Japan 8 feet to the east, shifted the earth on its axis by an estimated 4 inches and sped up the rotation of the earth by 1.8 microseconds.

How could such a thing occur, such a radical shift with mind-boggling results? “The temblor (earthquake) completely released centuries of built up stress between the two tectonic plates, a recent study found”

As of yesterday, June 30th, I have lived in Montana, for the second time, for seven years.  It has been just over three years since Allistaire died.  For the passed six plus months or so, there has been a building tension, a weariness more and more intensified, the layers of pain and loss compressing down.  My cry of lament to the Lord has been a pleading to bring this season of loss and sorrow to a close. Can we please be done with this Lord?  Can you please bring me into a new season, a season not marked by loss and sorrow and deep loneliness?  Many times I have sat across the room with my clients who ask me with plaintive, pleading eyes, the searing question that resonates in my own being, why should I go on with this overwhelming pain?  If this is all there is, why can I not just die?  The sorrow, the loss, the betrayal, the empty, the radical deep loneliness of feeling cut off, cast out and pervasive, cellular, visceral not-belonging.  The small room swells heavy with the questions, honorable questions, questions with the grit and scouring of reality – questions that greet me as I yet again enter an empty house at the end of a long day, as I lay my head on the pillow and wonder what it’s all about, a weariness that lacks the energy to circle round yet again, desperate to find the propulsion that will keep me going.

The rung upon which I cling is the hope that it will not always be this way. I take in their tears, the rage in their voice, the demand for an answer, their moaning that contorts their body as they draw back toward the office wall, an unconscious bodily response of repulsion of the horror that greets them daily. I sit alongside them, my own shoulders weighed down with grief in every direction, the questions pummeling even as I am already on the ground. I hold out my small hands, feeble, cupped as a bowl, and offer to hold hope.  Hope for them, hope for myself, that it will not always feel like this, be like this, protecting and nurturing that wee little flame that clings to life, the fervor small and frail that has tasted of something beyond this suffocation.

For six months I daily sat in this chair by the window, studying for my Licensed Clinical Social Worker exam, 21 years since grad school, trying to cram in thousands of new words into a brain that already felt saturated.  At times I wanted to scream out that my brain had already been asked too much, had finally learned the language of medicine and cancer. Once foreign and new to me, I learned to speak fluently – febrile, nadir, kinase, cytokine storm, monoclonal antibody, gemtuzumab ozogamicin, bortizomib, mitozantrone, ejection fraction, LFTs, vancomycin-resistant enterococcus, and my all time favorites – the “vincristine push” and Entresto – no, not “Ernesto” – it’s heart drug, not a Hispanic man.

And now I was asking this same brain, who had already learned this language of oncology, cardiology, immunology, pulmonology and nephrology, because the actual life of my child was on the line if I failed to master it, to yet again sit with a gun to my head.  Again it felt like a life was on the line – this time mine.  Learn this language of psychology and therapy…or else.  So I memorized the 12 criteria for catatonia which is easily recalled by the phrase “Stupid Cat Flexed and Grimaced at the Posterior of an Agitated Man who Steered his Mutts, Echolalia and Echopraxia, by their Necks” which is supposed to help you remember Stupor, Catalepsy, Flexing, Grimacing, Posturing, Agitation, Mannerisms, Stereotypy, Mutism, Echolalia, Echopraxia and Negativism – easy peasy lemon squeezy as Allistaire would say.  Lists of typical and atypical antipsychotic drug names got smashed in there along with SSRIs, MAOs and SSNRIs.  Now I can tell you all about Erik Erickson’s stages of development, Piaget’s stages of cognitive development, and Kolberg’s theoretical stages of moral development.  I can tell you how many times a week over what period of time you have to binge eat to qualify for binge-eating disorder, how many days in a row you must have exhibited “expansive mood” to qualify for having bi-polar I versus bi-polar 2 and how to differentiate between schizophrenia and schizoaffective disorder.  You know, your mom may just be the way she is because she’s stuck in the anal stage according to Freud.  On and on it goes, all the while I feel the cold pressure of the gun’s muzzle against my cranium frantic to cram in more and deliver it in sensible manner during that four hour exam during which I am not even allowed to drink water.

The winter has been relentless, even absurdly reaching 32 degrees and snowing on June 20th.  The relentlessness of the winter has paralleled this domination of sorrow and gun against my head sufficiently propelling me to not relent, to press on, desperate to be on the other side of it all.  And as the exam of May 29th approached and my studying seemed to reach its culmination, I found myself in a sort of quiet lull, and eerie time between times.  The hair raised on the back of my neck and I felt my throat clamped tight.  What is this, I asked with voice low and cautious.

It was as though in all my rush and fury, blurring of tears and frantic ceaseless action, I had unknowingly come to the edge, to the end of the horizon.  Suddenly I realized I had no idea what lay on the other side.  Just as I had focused all my energy and courage to get through my first pregnancy and just have my child safely delivered, I found the looming question, “now what?”  For eight years I have lived with and become accustomed to the terror of life-or-death.  The black form of the reaper has ever stood in the corner of the room, it’s heavy dark presence sucking in any light that dares come into its orbit, always in my periphery.  So intimately familiar with impending storm that ravages and destroys, with the metallic taste of blood and salt while thrashing out in the dark waves, I found myself bending forward, eyes squinting, what now?  The bottom has dropped out time and time again.  The potential for loss remains.  Turns out there is no quota for suffering, there may be and likely is more to come.  My Papa Murphy will be 96 years old this September.  “Forty-plus possible more years of this?” my heart cried. Oh God, oh God. Must I go on if this is all there is?  Let me be done God.

With only seconds remaining,  I pushed the button on the computer to say I had completed the exam.  My hands shook, my stomach cramped and heat stung the back of my neck.  Passed.  And just like that, the efforts of the past two and a half years since my husband walked out of our life, leaving me reeling, grasping for some path toward financial stability, it was done.  On June 6th I received word from the Montana Board of Behavioral Health that I had earned my Clinical Social Work License, a credential that means little or nothing to most who hear it, but is the pivot point for me financially and professionally, opening doors before me.

You see, I never wanted to be a therapist, it had never even occurred to me.  What I knew from the time I was an adolescent, is that employment is a trade, an exchange of money for your life.  Literally, I carve out these hours here and these hours there, like scrapes of my skin, flints of my bone, ounces of blood and I hand them over. In return?  I get money.   It’s all a bit sickening really, gross but necessary.  So I determined that such an exchange was not enough for me.  No, there must be more.  So I set out to look for work that would yield more than money.  Passing through medicine I landed on social work.  I have memorized the six core social work values, honestly having forgotten their specifics from schooling so long ago.  They are Service, Social Justice, Dignity and Worth of the Individual, the Importance of Human Relationships, Competency and Integrity. They are summed up in love and laying down your life for all – every single one of us humans, bearing the resplendent, other-worldly, image of the living God. And more, there is a fierceness in that love that stands in shield of those whose very lives and well-being threaten to be crushed by all the brokenness of this world.  It seems that God, incarnate in Christ Jesus, was the very first social worker, who declared worth and value and treasuring of those often disregarded, dismissed, passed-by, reviled – the poor, the orphan, the widow, the barren, the sick, the imprisoned, the foreigner, the not-belonging.

I have felt the sting of these.  For me there is not even a word.  I am a mother whose child is dead.  I am on the outside of my own native tongue which does not even offer me a place, a standing.  I offered to carpool to a work meeting the other day, when my co-worker gawked at my Suburban, asking me why I drive such a thing.  The question of why one individual would drive a vehicle clearly made for more, inherent.  I stuttered and stumbled, trying to explain that it once made sense though little now does. I remember learning long division in elementary school.  How satisfying it was when the little number fit so perfectly into the big one and how agitating a “remainder,” as though no one knew what to do with this extraneous left over bit, the little hunk of dough left after cutting out biscuits, fit only to be thrown away.  I feel the sting of being a remainder, a family of one-point-five.  I don’t fit anywhere and no one really knows what to do with me, other than to remember me on major holidays and invite me to their gatherings, never apparently being worth including of my own accord in an ordinary week.

My sorrows do not make it possible for me to know what it is to have as your first memory being taken from your mother in a police car with stuffed animals in the back seat, daily gasping at the blunt force trauma ever fresh that somehow you were not wanted, not deemed worth keeping and can only guess that you must have been too ugly a baby.  I cannot taste on my tongue the cigarette smell of your father’s mouth pressed on your little girl lips and his hand putting your hand on his crotch.  I cannot imagine that Disney’s Lion King is synonymous with remembering the panties you wore as you were raped in that bed, perpetrator on one side, your little sister on the other.  How can I begin to imagine the impossible decision before you to keep that baby or not, to consider a second abortion when you daily struggle just to survive in your own skin, unfathomable that you have the capacity to care for this new innocent so frail life when you have asked in agony again and again how you are to live out each day.

My own path does not allow me to know what it is to have walked that of another, but it has led me to sit in community with those who also ask weighty questions in the darkness, hearing our voices consumed by the black with no seeming answer in replay, no clear way to bind up the oozing, festering of lacerations, that even mere air passing over causes a wincing recoil.

As I moved the cursor and it hovered over the word “complete,” I shook from head to toe.  And with the appearing of the word, “passed,” the tears came hot and unrelenting for twenty minutes or more, I incapable of stopping them, trying to force a smile so the test proctor would not be too concerned as he approached me with forehead knotted.  “I’m fine, I passed,” I weakly uttered.  To the back bathroom stall out of the testing center I fled, and sat there on the toilet, face in hands, crying and shaking.  All I could say over and over was, “thank you God, thank you God, thank you.”  How many times have I walked and stumbled, my hand shooting out to regain balance, tears blurring my sight, muscles weary and mechanical, a mantra simply to walk through the next open door?  How many times have I stood on the other side of the door, mouth gaping, shaking my head in awe – He did it again, my God went before me.  Every single time feels like a miracle, because it is.

That most recent door of becoming an LCSW, is one more way to live out the absurd privilege that God has granted me.  Who am I to have been born an American in the 21st Century in a white girl body to English speaking parents who loved me and raised me in a stability that has yielded 50 years of their marriage to one another and financial means to send me to college and grad school and a brain that works decently well and a personality that has helped shape this path?  Do I get to take credit? Nope, I sure don’t.  But I am compelled to live out the belief that this privilege calls me to wield it in a way that cares for the lives of others, many of whom have had much more difficult, often brutal, starting points. Hence I am a social work and mighty proud of it, and God has seen fit through heart, personality, education, experience, the guidance and mentoring of those wiser and further down the road than myself, and little pieces of paper with letters like LCSW, to hone my craft of care bit by bit to more effectively love.

Having the fantastic relief and joy of passing my exam and earning my license, gushing in came the repeated refrain of “now what” tied tight to the longing to be done with this season.  There seemed to arise a pulse of my flesh which pressed out the words, “I am ready to set down this grief.” I don’t know that one can “will” the Lord into doing what you ask, but through flex of arm and movement of leg, and scanning of eyes, I have set about in this past month to purge my home of all that belonged to a life that once was and is no more.  At long last I have determined to live in the present.  Turns out to be a radically difficult feat for me, but into the trash I tossed the little purple piggy bank I painted with Allistaire’s name. The great green monstrosity of my wedding album, the dog brush whose matted hair has sat for five or six years unmoving, the pack-n-play and board books, the little shovel and rake all went sailing into the trash.  One of my clients works at the receiving door of Goodwill and just shakes his head as Sunday after Sunday I pull up with a car load full to the brim.  I’ve sorted bags and bags of cards received after Allistaire’s death, countless drawings by kids who said they loved Allistaire and prayed for her every night with crayola drawings and spelling challenging to decipher.  I sat for a whole half a day on the carpet with a ring of papers surrounding me – echocardiograms, bone marrow biopsies, flow cytometry and chimerisms, labs and bills. There were pages scrawled with notes in my own hand trying to make sense of it all, trying desperately to comprehend the words the doctors were telling me – to somehow use my rational, analytical pre-frontal cortex to make a way through while my limbic system was screaming in agony, a frenzied blur of misfired direction to survive – fight? flee? stuck like a frozen version of myself having no clue which way to turn.  I whittled it all down to a few inches thick of paper that now sits neatly in a little plastic bin with a green handle.

I have two full outside garage cans worth of papers to recycle.  Over half of my books have been swept off the shelves, many of which came from a time in my life in which I was steeped in a world that sought to debate nuances of theology for which I now have little to no energy.  It seems King Solomon’s words in Ecclesiastes still ring true, “I saw all that God has done.  No one can comprehend what goes on under the sun.  Despite all their efforts to search it out, no one can discover the meaning.  Even if the wise claim they know, they cannot clearly comprehend it.”  Even as I write this I laugh, knowing there are those who will feel compelled to debate me on this bit of scripture.  God’s word absolutely matters, and these days I am easing back into His grace knowing there’s a lot I won’t get “right” but setting my intention to live out a reflection of his love.  Do I join my client in going to her abortion?  Do I leave her alone in the dark of her misery and agony so as to ensure that my “stand for truth” will not be muddied?  Can I love and value the life of the unborn and the life of my patient too – at the same time?  I’m sure gonna try and I trust God’s grace can handle it.  A tangent I know…

I sorted through all the photo albums, having to throw out the evidence of an entire life which cannot go forward into the next.  Her closet is finally empty, having at last folded up the Disney night gown in which she loved to twirl. At long last, I went to the funeral home and had them divide Allistaire’s ashes into the two blue urns, one for me and one for her dad.  I asked with cracking voice if I could make a strange request, realizing as the words came out of my mouth that the funeral director had probably heard it all. “Can you set aside a few bits of her bone?” I could see them white in the bag of grey ashes, a bag weighing only 2.25 pounds. “The remains” – language the funeral director kept using in reference to my baby girl who weighed 8 pounds 3 ounces when she was born.  How could I explain that somehow I needed to have those bits of bone, the only remains of molecule connected to molecule to create the flesh that had begun in my womb.  How could I explain that these bones were the birth place of her death, a marrow that spewed out rot and broken when it should only have been the means of life.  What would I do with these bits of bone, I did not and do not know, only that while somehow I can imagine spreading her ashes in the wind or water, I must hold onto some fragment of her flesh.

And as the spaces empty and I contrive how to get rid of more, there is a lightening, there is getting out from under a pressing weight. Just over a week ago, I sat once again on a Saturday morning, drinking my coffee, staring out the window watching the aspen leaves shudder and quake and glitter in the morning sun.  I sat with a little book with purple binding on my lap, and honestly a grumpy assumption I was about to dive into another cheesy Christian women’s devotional that would make me want to puke and dump it too into the trash. But Tara had heard this woman speak and mailed me this book, thinking of me.  I ought to at least take a look at it.

I haven’t the time at present nor energy to begin to describe what happened next.  I can only say that just as after years of building tension, such a cataclysmic shift occurred on the earth that the island of Japan moved and the earth tilted on its axis, so in a twinkling of an eye did the Lord shift my heart.  Years of build up proceeded this moment, but it manifested in the time it took to read three pages.  The Lord gave me a taste for what may lay down the road, off in the distance there is the shimmer on the horizon of a place worth journeying to, a path worth treading, a way out of the darkness that demands an answer for the point of my existence.  The refrain that rose spoke, “perhaps endeavoring to alleviate some of the pain of others is reason sufficient to endure my own agony.”  Funny, sounds like my all time favorite verse – in Hebrews it tells of a man who though he huddled in agony in a garden, asking repeatedly for the Lord to let this cup pass, He concluded that “for the joy set before Him, He, Jesus Christ, would endure.”

To be honest, I’m tired and hungry and have the lawn to mow and the bathrooms to clean in anticipation of my parents visit.  This is one rare day off from work I’ve taken and I didn’t want to spend hours of it writing here, and certainly had not planned to do so.  Yet in my sorting I came across a series of pictures, pictures I took to show in a way no words ever can, what cancer IS – the bulging pressure of insane dividing cells that will not stop but press out the eye of your child so you can hardly bare to look at the ghastly white of eye that you should never see, nor the black blood that drains out of her nose because the cancer cells are filling her sinuses and purple of bruise along her cheek or the call for more pain meds because your little sweets is suffering and now matter your heart, you can’t make it stop.

I have no energy to go back through this post and correct the inevitable spelling and grammatical errors.  The truth is that in just over one month, I will for the seventh time, swing my leg over the saddle of my orange bike and pedal my way through miles of Seattle asphalt in a feeble human attempt to slow, and dare we hope – stop, the onslaught of cancer.  I am again asking you to consider helping support cancer research at Fred Hutchinson Cancer Research Center.  The series of pictures show not the progression ,but rather, the retreat of Allistaire’s cancer in the face of this beautiful monoclonal anti-body drug conjugate, Mylotarg, sometimes known as Gemtuzumab ozogamicin.  Dr. Irv Bernstein’s lab at Fred Hutch developed this drug years before my little girl would be in desperate need of its weaponry.  Allistaire is dead and her cancer overtook her in the span of two weeks with a white cell count of over 256,000 – 14,000 being about normal.  Her blood was sludge from being packed with acute myeloid cancer cells.  I watched my child’s grey mouth move like a dying fish on the shore and I will have to live with that image and the sounds that accompanied it.  I will have to live with the letter from the boy who writes to tell me their horse just had a baby they named after Allistaire – Sapphire Rainbow Sparkle Jewel, instead of seeing that bright spark of a girl continue to burst forth extravagantly in this life.

Allistaire’s cancer cells are stored at Fred Hutch in Dr. Soheil Meschinchi’s lab which holds the largest repository of pediatric AML cells in the world.  I will not forget the tears of this brilliant man over the loss of this seemingly insignificant six year old girl whose life cost $10 million to try and save.  I have said it before and I will say it again, until cancer is cured, Obliteride is no more or I am dead, I will continue to exert my small human efforts to try to alleviate some of this human suffering.  What more is the worth of my life than this?  What better task to put my hand to, to give my money to, to exchange the minutes and hours of my life for than to call out to the Lord for life again and again and again.

Every where I turn there is brokenness and loss and rot in staggering array.  Ever where I turn I can see if I am looking, that life presses on, that the light overcomes the darkness, that the winter ends, that out of the dark grime of dirt comes resurrection.  I cup my hands in this feeble bowl and I hold hope.  I am looking for redemption and I stand boldly in the throne room of grace asking the Lord to show His goodness in the land of the living, because He has invited me to do so, on the basis of my magnificent Jesus who sits on the throne.

To exchange a bit of your life for the well-being of others by financially supporting cancer research at Fred Hutch, support me in Obliteride by giving HERE

To read more about the crazy amazing doctors and research at Fred Hutch that directly relates to my girl who was a whole lot more than med rec number 1184859, check THIS out 🙂

For any arriving late to this story, or for those who wanted to make it to Allistaire’s service but couldn’t, here’s a link to that service three years ago in which I attempt to articulate what transpired.  Plus, I guess I should have provided this link long ago – oops.


Allistaire’s Memorial Service Details – Final Update!

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084Allistaire

(All are welcome to attend either or both services)

Memorial Worship Service

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

Saturday, June 11th @ 10:30am

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

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

 

Celebration of Life Service

(A time to focus on Allistaire’s life)

Saturday, June 11th @ 6:30pm (MST)

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

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

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

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

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

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

Many of the items included in the gift basket (totalling over $200) are pictured below:
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We Could Use Your Help!

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

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

 

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

 

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

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

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

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

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

 

 

 

Bouey

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

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

We bouey up.

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

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

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

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

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

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

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

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

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

 

 

Still

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

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

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

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

Quiet

Utter stillness

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

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

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

 

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

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

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

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

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

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

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

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

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

Good to Be Home

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

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

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

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

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

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

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

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

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

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

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

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

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

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

14176 Kelly Canyon Rd, Bozeman, MT, 59715

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

Click HERE to sign up to bring a mealIMG_0463IMG_0465IMG_0467
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Come to the End

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

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

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

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

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

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

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

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

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

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

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

Click HERE to donate.

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

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

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

Blind Sided

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Longing

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Stirrings

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Donate HERE to support me in Obliteride to end cancer!

Check out all the details at Obliteride.org

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

Learn more about Immunotherapy

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Cacophony

Standard

IMG_2600Cacophony

Disparate.  Discordant.  Dissonance.

Turning this way and that, buffeted, battered.  Every angle met with contradictory force.  Joy, relief, yellow, bright splintered through with black, tears.  Flashes of bodies warm gone cold.  Flashes of giggles and bright eyes and stiff bodies born down hallways blocked from the eyes of the living.  Friends gone.  Gone.  Turning east, car seats empty.  We should NEVER go east without those faces in the rearview!

And I sit in sunny room, a palatial expanse, hum of the dryer and a sudden home, a grocery list and kitchen utensils and a recipe.  Sixteen months and the first meal cooked.  Not microwaved.  Not to-go styrofoam from a restaurant.  Ceramic plates.  Glasses.  Imagine: a refrigerator, a stove, a sink, a table, a child, all in the same room.  No flights of stairs to run up and down to heat up yet another hotdog.  For the first time in sixteen months, I sat in a cushy chair in the early morn, coffee and book in hand.  Wonderment.  Grandeur.

I walk out into that cool of night, crystalline stars blue and white, sparkling, not trite but truly, they sparkle.  How long since I looked at stars?  There, Orion’s belt.  Stars countable in a city sky.  I walk the 30 feet from the Ron Don Apartments solely for those patients discharged from bone marrow transplants, into Ron Don’s House A.  A familiar face and a story.  Kidney failure from a culprit whose name I know so well, drawing its milky substance into the syringe, three times every day, waking her every night at 2am.  “Allistaire, Allistaire.  Wake up sweets.  It’s time to take your med.”  Up she rises in the dark, half-asleep, trusting, mouth open.  And little John, little John.  “But I thought they went home?!” my voice a near quiet wail.  He bled out.  Just blood everywhere.  But, but…his platelets?  No, they were high enough.  His clotting factors then?  No.  No.  His cells just broke open.  He bled out.  Another family swept away east, empty-handed.

I stumble back through the night air, to my spacious abode, to my bald-headed girl.  Bright.  Cheery and spinning.  And I draw up the meds, again and again and she opens her mouth.  Trembling at the huge chunk of magnesium.  Shaking at the sight of that fish oil capsule.  But you must.  You must!  Press forward, rush at that pill before it gets the better of you.  Defy it.  Don’t look at it.  Don’t think about it.  Just do it.  Put it on your tongue and swallow!  Can you not hear the pounding of some monstrous hooves?  The breath hot and rancid on your neck?  The flying of rabid saliva.  Run Allistaire!  Run child, run!  We must keep running, I silently wail.  And the ashes of children, children whose voices I have known, ashes of eyes that once were bright, falling, falling all around us.  Ashes on our cheeks, ashes in our hair.

And upon the wall I’ve hung the art, the endless rainbows of color.  The cheery felt flags and the string of butterflies.  I’ve purchased bins, bright taffy pink bins with lids, little woven bins of lemonade yellow.  The lip glosses go here and the legos there.  Spread out the new Ikea rug across the cold faux-wood linoleum.  Set the picture frames upon the tables and cozy up to lamp light.

We escaped.  Maybe.  But who are we that we should be any different?  Who am I that I should be allowed to keep my child?  I watch the eyes of my friends.  I reach out and know they are impossibly far away.  They dwell on the other side of that gulf.  People say, “So, one-hundred days huh?  And then you get to go home, right?”  You see, I never imagined we would even make it to this day, this twenty-eighth day post transplant.  Allistaire’s done so well, she discharged from the hospital last Wednesday, February 3rd, in near record time.  A mere twenty-two days post transplant and after a short 46-day inpatient stay, Allistaire walked out of that hospital into the light and air of the outside world.  And I felt relief and awed shock.  How?  How did it go so well?  How was it so incredibly easy?

The very next day our out-patient life began with a full day of clinic appointments at SCCA (Seattle Cancer Care Alliance).  I hadn’t prepared my heart, just read the times dictated to me.  Go here, go there, at this time she’ll get her blood drawn, meet with the nutritionist, the social worker, the pharmacist, the nurse, the attending physician.  Yes sir, yes ma’am.  We do as we’re told, we open our mouth and move our feet to their instruction.  I’d forgotten the stares.  The stares of adults with cancer taking in the image of a small girl, bald like themselves.  A sort of horror and wonder in their eyes as they take in the smooth curve of her cranium, little blond hairs sporadic at her crown and nape, tubies peeking out from under her shirt.  I’d forgotten the sight of great swelling cheeks, cheeks that no obesity could fashion, cheeks like grapefruits, the effect of steroids unmistakable; steroids the primary defense against GVHD.  She seems to have made it out alive from transplant, but there it is, staring us in the face, the next beast threatening to devour and the perverse desire for it to come.  Yes, GVHD (Graft Versus Host Disease), you are welcome here, we invite you, come, come devour, come eat alive the ever-present threat of those mutated cells.  And I gag at the thought.  GVHD can kill.  Kill outright or kill by slowly stealing away quality of life.  And yet, not even radiation on par with a nuclear blast, not round after round of ravaging chemo is enough to trust those bastards are gone.

Walking in the doors of that building, going to the 6th floor for the transplant clinic…it all comes sweeping back, a flood of memory, the terror that rose, water to the neck.  Abrasive, the memories admonish, don’t let down your guard, don’t feel at rest, muscles stay tense, eyes alert, edgy.  When is it coming for her?  When will it strike again?  Only 50 days after her first transplant in June 2013, her cancer showed itself again.  Will we ever, ever be rid of it?  Will this crazy life ever end?  And you tell yourself to shut your mouth.  Your friend, whose hand and the cold hand of her daughter you held, tells you she would given anything to be in the fight again, just to have her little girl with her.  So don’t you dare weep for the ravages of your life, for she is with you!  She is here!  But will it ever end?  Oh God, must it end that way to end?  She had her Day +28 bone marrow test yesterday and her chimerism test to determine what percentage of her marrow is her own and what is donor.  How long might we enjoy this reprieve?

Dr. Cooper saw her in the hallway yesterday, and said, “She just looks SO good!”  Words echoed by many, many that have walked long on this journey with her.  Yes.  Her eyes sparkle with glee.  You should have seen the enamored wonder in her eyes as she spun in her new room, her own room in our Ron Don apartment.  “I was squealing getting into the car,” she tells me, “all my dreams are coming true!” she grins.  I cried when I walked in the door of our apartment for the first time, less than an hour after hugging Stevie’s parents, Keshia and Michael, and grandmother, Linda, goodbye, knowing they had one last stop before traveling east on I-90.  They were headed to pick up Stevie’s ashes.  And I was headed into a new apartment and post-transplant life.  Tears that they had a U-Haul trailer full of Stevie’s toys, toys to pack away in a storage unit, and I, toys to pull out of boxes to set up in anticipation of Allistaire’s joy.  Tears that we have this gift we’ve done nothing to deserve.  Tears that this present lull in no way guarantees we have escaped the same outcome.  Tears for a home that is not home.   So weak the prayers, “Oh God.”

Allistaire is doing wonderful so far.  She has clinic days at SCCA each Monday and Thursday, with frequent lab draws in-between due to the ongoing need for transfusions, especially platelets which are the last to recover.  She engrafted on Day +20 with an ANC of 2050.  Her ANC has since dropped due to no longer getting the GCSF (Granulocyte Colony Stimulating Factor) infusions, but today was 630.  Allistaire has not had an ANC that high for nearly a year and a half.  Her medications continue to be adjusted as drug levels are taken and electrolytes change.  She gets 35 doses of meds per day which include the immune suppressants tacrolimus, and mycophenolate mofetil (MMF), hydrocortisone to compensate for the insufficiency of her adrenal glands, acyclovir to protect against certain viruses, voriconazole to protect against fungus, dapsone to protect against pneuocystis, ursodial to protect her liver, fish-oil to reduce her high levels of triglycerides, vitamin D supplements and a multivitamin.  For her heart she takes hydralazine, isosorbide dinitrate, carvedilol, lasix, spirinolactone, magnesium supplements and Entresto.

Her higher ANC betrays the true weakness of her immune system.  Because her transplant wiped out her immune system, it also wiped out the immune effect of the vaccinations she has received, with the exception of chicken pox because that lives in the nerve cells.  It will take an entire year for her immune system to fully reconstitute.  Only then will she be able to get re-vaccinated, for the third time in her life.  For this reason, for one year post transplant she is not allowed to attend school nor any event or go to any location with a high density of folks.  We venture out with caution, at off times, mid-day, mid-week when we must go to the store.  She cannot dig in the dirt, cannot frolic in the grass, must avoid house plants and all sources of fungus.  Her food must be more carefully washed and cooked to avoid food born illnesses such as E. coli, Salmonella and Listeria.

We walk forward in hope, though it is not a bright and refreshing hope.  It is the hope of the hunted.  It is hope that there may still be a way through, though the dangers great.  It is a hope permanently stained with images of those who have fallen, images of tear-stained faces of friends, bodies lining the road behind.  It is a hope that feels a bit crazed and frantic, a panting from hard running.  It is a hope that yearns for a day when this fleeing may cease and a weapon will have been crafted that can be thrust deep into the heart of that beast, killing it forever.  For now, we strain forward, seeking to feel the warmth of sun on our faces, never taking one moment of life and bounty for granted.  My prayers are short.  “Thank you God.”  Thank you for this ice amazingly ever available in this freezer.  Thank you God that every time her platelets drop there are platelets ready to replace the empty space.  Thank you God for an oven to bake cookies in.  Thank you Father for that giddy joy she has as she places the chocolate chips in the pancakes.  Thank you God for the hope that we will see Solveig soon.  Thank you God that Allistaire is almost 6 years old.  Thank you that though we have been chased relentlessly for four years, her life has tripled from what it might have been.  Thank you God for every time I get to hear, “I love you Mommy.”

And I cry out to the Lord on behalf of those who have lost their little beloveds.  Oh, Lord.  Oh Lord.  Have compassion.  May your Spirit go out from you and dwell within those broken, bleeding hearts.  Comfort with the comfort that only You can yield.  And do not turn away from this ravaging, God!  Come quickly!  Bring an end to this brokenness.  Redeem the loss.  Raise the dead.  Bind up the wounds.  Put an end to the curse and bless.  Wipe away the tears.  We are expectant for You!

And Father, though we run as those chased, let us simultaneously find our rest in You, our only home, our very life.  May times of refreshing come to my heart, dependent on You, not on changed circumstances.

My friend lost her baby girl the day before she was to be induced.  She had to push out a child not breathing.  Only months later she learned she had cancer, at just about the same time she found out another child was on her way.  Now there is a bright, smiling baby girl in her life and tomorrow she finds out if her cancer has stayed at bay.  Her longing is that she might be singing when the evening comes, no matter the results.

Yes Lord.  May we sing out, even as tears stream down, let us bow low and worship and fix our eyes on You.

(Got a call yesterday evening with Allistaire’s bone marrow biopsy results…0% detectable leukemia by Flow Cytometry and 100% Donor Chimerisms in both the peripheral blood and marrow – this means only Sten’s/Donor’s cells are detectable and nothing of Allistaire’s old immune system, including her cancer, is detectable at this point.  What an incredible grace of God.  Thank you.  Thank You Lord!)

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