They call it the cold smoke.  The snow so fine it floats on the currents of air, swirling, aloft.  The drive down Bridger this morning was more treacherous than it seemed it should have been.  The plows were not yet out and the cars in front of me were invisible in the swirl of the snow, only intermittent glimpses of brake lights.  Despite being sick, I was drawn out into the morning’s weak light for some quiet hours to try to put into words the last month.  Of course the thought of a scone and breakfast sandwich at Wild Crumb was a pretty strong draw as well.

So here I sit with a cup of coffee and a huckleberry scone with the perfect crisp sugary outside and delightful taste of summer inside.  The truth is I am still surprised to be here.  When I tucked Solveig into bed on Saturday night, January 21st, I told her I hoped I would be back in a week and a half.  But I told her I didn’t know.  I really didn’t know.  Sometimes Seattle feels like quicksand, you can so quickly become entrapped, unable to struggle free.  For the sixteenth time they would plunge the needle into her bone, in that purple dent on her right lower back, looking again for those cells that never cease to threaten.  Her hematocrit had been dropping, down around 34, the lowest I had ever seen since prior to transplant.  I feared relapse.  But you know, it wasn’t just an unsettlingly low hematocrit, it was God, He was preparing me and I didn’t like it.  On more than one occasion I wanted to tell Him to knock it off; He was freaking me out.

Only a week and half from today, it will have been a year since that day that is branded into my heart.  On that snowy Wednesday nearly a year ago we received word from Dr. Gardner in Seattle that the lump in Allistaire’s back was indeed leukemia cells and that we needed to get to Seattle as quickly as possible.  With face swollen from inexpressible sorrow and tears, I tried to answer my sister-in-law Jess.  She asked how long we would be gone.  “Six months, a year, I don’t know.”  In that moment I could never have imagined the ragged path that would stretch out into the year ahead of us.  I knew that in the best case scenario it would be six months, but I knew enough to know that plenty of terror could truncate that time into mere months or stretch it out into the realm of years.  And so in some strange way, as the world tilts again to February, to the time when one begins to weary of snow and cold, and yearn for the breaking of winter into spring, I found  my life repeating in strangely eerie ways.

Everywhere white.  Snow boots everyday and the time-lapse between icy breath in the car to the blasting of heat.  We meet at the end of the driveway at 5:15am and don our headlamps as we head up the side of the Bridger foothills, to that great white “M” fashioned on the face of the mountain.  My friend, Hope, and I head out into the dark to fight back the weight that seeks to settle on our surfaces and to be in the presence of the dark land and to be in one another’s presence.  We did the same a year ago.  We had barely begun our pattern of exertion when I was swept away with Allistaire.  We had barely begun to pick up where we left off when it was time again to head west to Seattle, uncertain of my return.  On those hikes up the hill a year ago, I told Hope about how God seemed to be preparing my heart for the realization of my greatest fear.  In His mercy He allowed me to sense the swallowing, suffocating darkness of possible relapse and told me in the clearest of ways, that repeated refrain, that He was there, in the darkness.  Come what may, He would be with me.  He would never leave me or forsake me.  And more – He audaciously promised to turn darkness into light.  I repeated His words to Hope on those dark mornings with head bent down, watching only the circle of light in front of my steps.  As so it was again, I recounted His grace to me, how He seemed so relentlessly at work in my heart those few weeks before we were to go back to Seattle.

How much of who we are could be better understood as a reaction to some unseen circumstance, some reality that seems questionable only because it dwells in the past but whose weight presses into us like a mold into clay.  As others encounter our surfaces, those forces that cut us, that exerted against our spirits, those days and moments and faces that softened and hardened us, are unseen.  We are often left to see one another only by what is readily visible.  And without exactly saying so, I have been asked why I rush to relapse.  Why do I sprint toward darkness and woe?  Brandon hit the floor, dead at 18, in the middle of brushing his teeth.  This tall, lanky tan kid who ran 20 miles before breakfast, passed from vitality to extinguished life in a breath of a moment.  As Sten and I disembarked the plane from our honeymoon, the gaunt face of his mom unexpectedly greeted us.  Matt was dead, killed in a car accident just days before.  I remembered standing next to Matt almost exactly a year before that, hearing that his friend Natalie, had been killed in a bus accident in Africa.  We could not have guessed that we would be hearing like news of Matt not long later.  These two were the first of an unwieldy number of lives lost too young.

As a kid growing up, I watched the wreck of relationships caused by grudges held to fiercely over the years.  Somewhere burrowed deep in me grew the resignation that I would do my best to never, ever let the sun go down on my anger.  I willed to never let division whittle its way into my heart, severing me from those I held dear. And as I faced the brevity of life, I willed to soak in life, to taste and see and hear and speak.  I determined to speak out loud what needed to be said, to tell those I love, that I love them now, never assuming there would be more time.  I began the habit of intense observation.  With eager forward bent, I sought to observe the light on trees, the silhouettes of swallows and bats at night, the sounds of voices, the details of ears and expressions.  I was determined to not miss what might soon be lost.  Any moment could be that last moment, the unexpected, seemingly trivial moment that could swell to significance were it be the last of something dear.  Some would call that morbid, but I saw it as becoming enriched, of taking into myself the beauty and delight of the life that is.  What if I had rushed passed those details, absurdly assuming they would always be there for the taking?  What if I didn’t speak and the opportunity was lost?  I so very much wanted, and want to live a life without regrets.  Perhaps too it is Thoreau’s fault, he who said he wanted to live deeply and suck out all the marrow of life, who when he came to die, did not want to discover he had not lived.  His words resound in me.

And then there was my deceit, my lying ways.  I was a liar of a child, a manipulator and even a petty thief.  After getting caught in 9th grade for stealing a sticker worth a mere dollar, I was shocked into considering the person I was becoming.  I was ironically on an Honor Society field trip to the Puyallup Fair and ridiculously decided to steal something I could easily afford to buy.  On that odd day, something turned inside me and I determined not to lie any more, to never steal again.  In the years that followed, my personal choice to be honest grew more weighty and filled out, such that I began to discover that I was strangely empowered when I had nothing to hide.  When I chose to walk through life exposed and vulnerable, I began to see that I need not fear people discovering something dark I was trying to hide.  I enjoyed the sense of lightness in my step when I was less burdened with the fear.  When I pulled my darkness into the light, it lost some of its power and what’s more, then it could be examined, explored and dealt with.  The thing about being honest and vulnerable though, is you are open to assault, you are unprotected, unshielded.  When the blade comes at you, it simply buries into your flesh, it is not deflected.  But here too, the Lord revealed to be a mystery beautiful.  He would heal me, He would bind me up.  He does not promise a life free from pain and hurt, free from the stinging pain of being wounded even by those you love, but He promises to carry me, to bind my wounds.  And He promises forgiveness when I am the one wounding, lacerating.

All of these mosaic bits of color and light and dark, bring me to this place of willing to look my greatest fear straight on.  I turn again and again to this darkness, this fear, this overwhelming mountain of doom that threatens to swallow my life, because I seek to wrestle.  I know too many dead kids and can imagine too easily those last moments, the last time to say goodnight or the last giddy run across the living room or grass, to pretend that relapse, and more significantly, the death that is so often tethered to it, is not utterly real and possible.  I suppose there is an element of wanting control, of not wanting to be knocked down in surprise when the board slams into my skull, or the knife again slips hot between my ribs.  I know rationally that I can never, ever be prepared sufficiently for such a blow.  Allistaire’s death would without a doubt knock the wind out of me.  I would surely find myself crumpled on the floor.  So why do I keep turning toward it, willing myself to look my greatest fear in the eye.  Yes, there is loss when I choose to do so.  There is a way in which giving attention to an unknown, and only merely possible, not certain outcome, is waste, waste of present energy, waste of present joy.  I have certainly known many a day, eroded away by fear and anxiousness and sorrow.  I know my eyes have too many times glazed over with tears as I watch Solveig and Allistaire dance, wondering if it is the last time.  Countless nights, hot tears have slid down my cheeks as I lay in the darkness next to Allistaire, wondering how many more nights I have with her.  Yes, my choice to face the darkness has too often in turn stolen away life, life that didn’t need to be lost.  Ironically, in my yearning to take hold of life, I have let too much of it slip from me.

So there is loss, but, there is also gain, gain of a different sort.  For when I turn toward that darkness, I am also turning, turning toward the Lord, choosing and willing and determining to look Him in the face.  Because that is really what this is all about.  Cause the thing is, He is the One doing this.  He is the One determining all the days of my life before one of them comes to be.  In a flash, He could bring this to an end.  In a flash He could dissolve every and any cancer cell that still dwells in my child’s flesh.  The thing is, He has set me on this path and it is ultimately He that I wrestle.  I peer around at this terrifying land He has placed me in and I am repeatedly confronted with the question of is He good, can I really, really trust Him?  He stopped the life of that child that had begun to grow inside me.  He put an end to that life and made way for the life of Allistaire.  He knew what He was doing when He made her and He could have changed the course a thousand times, but this is where He has directed me.  The question I face over and over  is whether I will yield to Him and learn more and more what it is to truly rest in Him.  It’s pretty easy to walk through life, all beautiful and light and bursting with abundance, the Lord by your side.  But what of those darker days when He is ahead of you, stretching out His hand, beckoning you to come take His hand down a road where you can see nothing, nothing but your feet in front of you, where all around the blackness is thick with cold.  Your finite mind cannot grasp onto one good reason to walk into that black.  Your whole gut is in revolt and demands that your turn and flee.  You are pretty sure there is nothing good down that path, you can only imagine destruction in fine detail and sweeping, broad blows.

Like a contortionist, I strive to bend low and attend to the gritty details of blood counts and rashes and the nuance of appetite and energy levels while simultaneously fixing all my gaze above, on my beloved Christ who spans all of time and place and circumstance.  I grasp my side where the ache is still so tender from deep searing wounds and I gasp as I imagine wounds still to come, blows that threaten to take my breath and swallow my life.  But as I said, that God, that relentless God that won’t let me go, that God who formed me in my mother’s womb and who chose me in Him before the foundations of the earth, He is patient to wrestle with me, and continues to form my heart.  I cannot say that He has taught me something new this past month.  He has not pulled back the veil to reveal more.  I can only describe it as having the sensation of being suspended.  Somehow He is deepening my rest in His Word, in His promises, in His declarations of how and what this life really is and in so doing, He has moved me forward in Him by enabling me to dwell more in the present.  That doesn’t seem so profound.  How many times has the mantra, “take it one day at a time,” been repeated as though the simplicity of the statement means it is simple to do.  Never have I found something so hard as to dwell in the day, in the present.  It feels so often as though it is up to me to press on those towering walls of water, the weight of the past set up against the immensity of the future, both threatening to collapse down on me, crushing me like the Egyptians in the Red Sea.  But here, the Lord has made this strange space, this open land between the past and the future.  He is forming for me a way through, a way of refuge on dry land.

I somehow feel more aloft.  A little less fettered.  A little less burdened.  A little more buoyed up in Him.  A little more content to trust that He holds the weightiness of my past and my future.  Those walls of dark water rise up on either side and I can feel the energy and rush of their cold spray, and yet mysteriously, here I am, in the middle, right between the already and the not yet, right between grace past and grace to come, delighting in grace now, grace present.  I couldn’t even bring myself to make plans in Seattle for anything past Tuesday afternoon, when Dr. Gardner would call with results.  I knew that the whole landscape of my life could shift and break once again just as it did those few years ago when the continental plate repositioned 14 feet, causing the tsunami in Japan of terrifying proportions.  I had already been swept away once, it did not seem outlandish that it could happen again, especially as the details of life repeated, repetition from a year ago.  I asked the Lord to help me just enjoy the days that led up to our departure, just let me soak them up, not with morbid preoccupation that they may be last days, but form in me a new pattern, a new way of dwelling in the present, of delighting in the now that does not require loss to illuminate value.  And He answered that prayer.  As I pulled out Allistaire’s piggy jammies from the drawer that Saturday night, I found my mind drifting toward the question of would she again sleep in this room.  So I asked the Lord again to come to my aid.  I turned my eyes to Allistaire and fixed on delighting in her form and the childish, adorable lilt of her voice.  As the girls danced that night to crazy, hard-core music, I  sat with contented smile on the couch, tucked in Sten’s arm.  What a life I have, what gift, and I am consuming it, taking it into me not like last rations, but like manna, like nourishment for the day.

Sometimes walking with the Lord really is like wrestling and you can barely get your breath.  He seemed to just not let up, so continuous was His work in my heart in those two weeks before our return to Seattle.  I was thankful but it also seemed like relapse was ineveitable, simply because of how much He seemed to be accomplishing in my heart.  Again, I resolved to not live with dread that Monday and Tuesday but to attend to the details of the day, taking delight wherever I could.  We arrived at the hospital at 9am on Monday, January 23rd so that Allistaire could drink the giant cup of apple juice with the contrast in it, in preparation for the cat scan to come.  For someone Allistaire’s age, they automatically schedule anesthesia for the cat scan, not assuming a nearly 4 year old can stay still for the 3o seconds it takes to form the image.  But I was pretty sure she could do it – she did well in September the last time she had a CT and I hoped to avoid a day with two sedations.  They velcroed her in like a little papoose and she did a fabulous job of staying still.  Labs were then drawn and we had about an hour to wait before we would meet with Dr. Gardner.  Allistaire had no problem passing the hour glued to her iPad, and I had a great book, “Wednesdays Were Pretty Normal,” written by a dad whose son had ALL, the more common form of childhood leukemia.  You might think that reading about a kid with cancer wouldn’t be the best distraction as we waited for CT results, but in fact, reading of the father’s pursuit of the Lord was exactly the sort of spurring on that made those 60 plus minutes a restful yielding.  My hands only grew clammy as we honed in on the 10 minute mark before we would see Dr. Gardner.  When we were in the exam room with vitals already taken, I was alert to the door opening and taking that first look at Dr. Gardner’s face, like looking at tea leaves to portend the future.  Doctors, they drive me crazy sometimes, don’t ask me how I am, I don’t want to chit-chat…how did the CT look?  “Oh it’s good, it’s good, every things clear, ” she says like this the only reasonable outcome.  “And her labs are good too.”  I look and still see that blasted hematocrit of 34.9 that I was so hoping would be have risen.  But, it’s steady and the CT is good, maybe it’ll be okay, maybe the bone marrow will be good, maybe.  Thank you God.  Thank you, thank you, thank you.  The only bomb of the appointment is that doctors had discussed Allistaire’s case and decided they wanted her to do yet one more round of chemo.  This was scheduled to be her last but they want 6 rounds post remission which would result in a total of 7 rounds of Azacitadine.  It’s all a guessing game really and what they decide is based almost exclusively on what has been done in adults as very few children have ever been given this chemo, this mysterious substance that somehow changes the DNA of the cancer cells making them more identifiable to the body’s own immune system for destruction.  One more round of chemo?  I’m not going to argue, bring it, let’s do what we have to do to knock that junk down for good!

The long day continued with a 45 minute delay past the scheduled bone marrow aspirate, but at last we were there once again, taking up our familiar positions, Allistaire lying still unconscious in the bed they wheel into the recovery room and I in the adjacent chair, taking the odd picture of my child whose just had her bone plumbed.  If you’re wondering why Allistaire wears the same outfit in so many pictures, the one with the fantastic purple plants and the outlandish coral flowers, it’s because this is her weigh-in outfit.  Every single time she gets weighed she is wearing the same sweater, pants and socks.  I don’t want to have to wonder if her weight is being impacted by the bulk or lack there of her clothing.  So it was Monday, weigh-in day in Seattle and she had only dropped .2 kilograms and here she was again, for the 16th time, waking up from anesthesia after having a bone marrow test.

Recovery room is a bit of a misnomer as you pretty much get kicked to the curb the moment your kid is conscious and their vitals are determined to be stable.  There really is no recovering, no, you as the parent are kicked out the door with a kid crazed from anesthesia.  It’s not my favorite, at all.  On this day, however, we were simply moved to another room where we were to wait for Dr. Carepenter, the SCCA GVHD guru doctor to come see Allistaire.  We’ve only been able to see him once, way back in September and are supposed to see him every 6 weeks but between his schedule and ours it hadn’t worked to see him again until this visit.  He was currently the inpatient attending bone marrow doctor and was making an exception to come see us in clinic since we were technically in the same building.  She was in her crazed post-ansesthesia, haven’t eaten or drank all day and I need a nap real bad state.  Not probably the best time to examine Allistaire but this was our only window of opportunity with Dr. Carpenter.  He did his best to evaluate her and felt like she looked like she was doing well with no evidence of GVHD.  He approved the taper of her prednisone, which if all goes well, would be complete in 6-7 weeks.  At that point she would no longer be on any immune-suppressants which would be SO awesome.  We want her off those steroids both because of their awful side effects on the body and because we don’t want to dampen her own immune system from maximizing its fight against any remaining cancer cells.  Other than a flaring of GVHD, the only other possible concern about this taper is that as we near the dose that equals the amount of steroid her body’s own adrenal glands are supposed to make, we could see GVHD-like symptoms that may in fact be a result of her adrenal glands being tired and not “awake.”  Because her body has been being supplied steroids orally in the form of prednisone, her body has not had to rely on it’s own ability of the adrenal glands to produce the body’s natural steroid.  Should this become the case, they would prescribe a different steroid, hydrocortisone, to supplement while her adrenals wake up.

Our appointments Monday finally wrapped up and all we had to do was wait until late Tuesday afternoon to hear from Dr. Gardner about the Flow Cytometry results from her bone marrow aspirate.  There would still be chimerism, morphology and cytogenetic results that would take longer to come back, but the Flow is considered to be the most sensitive and definitive test.  Again the Lord sustained us throughout the day and I amazingly and genuinely felt at rest, knowing my Father who spoke the world into being, who determines every atom in existence, who knows all the days ordained for me, the God who turns darkness into light, He was the One who would really being revealing the next step in our journey that day.  I won’t lie though, twice Dr. Gardner gave us the worst news.  On that Tuesday afternoon, with glib delight in her voice, she called with the news that the first pathologist who reviewed the results of the Flow Cytometry was “very confident,” that there were no detectable cancer cells.  Of course, protocol required a second pathologist to review and confirm results.  Dr. Gardner agreed to call back when the final report had been made.  Not even a half and hour later, she reported again the absolutely glorious wondrous news that my little sweet girl was devoid of any cancer based on the very best of man’s technology’s ability to detect.  I could hardly believe our good fortune and God’s mercy was again made manifest in the tangible flesh of our little girl.

Can I tell you how delighted I was to take Allistaire to the hospital Wednesday morning, January 29th for her sixth round of this chemo?  Oh how I relished in seeing that fatty syringe of chemo locked into the pump and line going down, connecting to that line burrowed into her neck, the pulse of her heart blasting it into all the veins throughout her body.  Yeah chemo!  Sometimes you want chemo, sometimes chemo is gift upon gift.  In our appointment with Dr. Gardner on Monday, she had marveled at how well Allistaire’s body has held up under all this relentless assault.  Her liver, kidney’s, and lungs have done remarkably well.  They remain healthy as much as we can tell.  Even her heart, weakened by the chemo from her first bulk of treatment, continues be only minority effected.  And to add gift to gift, Dr. Garder, with twinkle in her eye, suggested we plan to have Allistaire’s line removed at the end of her next round of chemo.  What?  Oddly, it all seemed so fast, this year stretched out so, so long could actually, maybe coming to an end?  Allistaire is scheduled to return to Seattle and begin her last round of chemo on February 24th and have her line pulled on Tuesday, March 4th.  We would be home on the 5th, the day before her 4th birthday, a day I really didn’t know if I would ever see.  I rejoiced in all this amazing news, but held out a bit in my heart, wanting to get those last results.  And then one by one they came back, “in morphologic remission, ” 100% donor cells in her whole marrow chimerism test and no evidence of the MLL rearrangement by cytogenetics or FISH.  I look forward with bewildered joy that the end of her treatment is actually in sight.  It is actually just less than a month away. Inconceivable.

Life in this war-torn land has left me a little jumpy though.  I live today, taking in the joy of today’s abundance, but as always, I don’t count on “good” results tomorrow.  The tentativeness of our life was once again affirmed the very next day.  Thursday evening Allistaire threw up twice at our friends house.  This was unusual for her and didn’t fit her typical pattern of chemo-induced nausea.  By Friday morning, she had thrown up twenty times.  I lay beside her all night, helping her to get it all in the little crescent-shaped mauve bowl, holding her from behind as her body convulsed and retched, rotating the blankets when she didn’t make it to the bowl quick enough.  Sometimes we had a 10 minute lull, sometimes as much as 45 minutes in between.  I tried to get her to drink as much as I could, knowing how swiftly she could become dehydrated.  A few hours before we were scheduled to come in for chemo, I called the HemOnc fellow on call and asked for fluids.  It was our old friend, Urmilla who has known us from the beginning.  She was on it.  She would order fluids and have the on-call doc in clinic take a look at her.  By 8am the vomiting had finally stopped, though we had barely slept.  I reported two large diarrhea diapers as well to the doctor.  As the doctor lifted her head that morning from examining her, she asked if Allistaire’s liver was always that large.  What?  It’s never been enlarged as far as I knew.  My only comfort was knowing it couldn’t be cancer, so recent were her good results.  The doctor order blood cultures, labs, chemo to be held and scheduled an ultrasound.  She feared a possible clot in her liver given all her meds that increase risk of clots.  She wanted to admit Allistaire so she could be “followed.”  Oh no – I did NOT want to go back there – Allistaire had not been up to the 7th floor oncology unit since she was discharged after transplant in July.  I asked if we could please, please wait for some test results.  Antibiotics were given along with an IV dose of hydrocortisone to help with the stress of her illness.  A stool sample was taken.

Then just as suddenly, the world tilted back to normal.  Our sudden rush down was replaced with release.  Her labs were fine and upon a second examination, Allistaire’s liver felt pretty normal.  Perhaps it had felt so large because Allistaire had been laying on her side, the doctor explained.  Well good grief, I would sort of expect the doctor to have noted that possibility.  But what can you say, when seeming disaster has been avoided, the only real response is relief and thanks.  Allistaire slept through it all, so exhausted from the night before.  So we went  back to the house, she slept, I got just enough food into her that I could give her meds without upsetting her tummy again.  That night we ended up in the ER for several hours due to a fever of 102.8 for vitals, more blood cultures and a nasal swab.  Quite remarkably, this was the very first and only time Allistaire has ever had to go to the ER for a fever since she was first diagnosed.  This is virtually unheard of, so I felt we were due and I really couldn’t complain, despite being so fatigued.  Before we left, we got back results from the nasal swab that Allistaire was positive for enterovirus which likely explained the bought of vomiting 24 hours before.  Saturday afternoon, results of the stool sample came back positive for C-Diff, a nasty “gram-positive spore forming bacteria,” that causes horrific abdominal cramping and spectacular amounts of diarrhea.  Up until that point Allistaire had only had minimal diarrhea the past few days, but it was as if those test results signaled the onset of amped up symptoms.  The poor girl was just a wreck.  She felt miserable.  She was nauseous from chemo, in significant pain from the abdominal cramps, didn’t want to eat anything for days, was utterly fatigued and had me putting on the pressure to get food in so that I could get in all the meds that require food in the tummy, all the while knowing her weight was plummeting. It really was almost the sickest I’ve seen Allistaire.  She was unbelievably grumpy for so many days.

The remaining days of chemo were rough and just days to get through.  The one highlight, other than of course the glorious test results, was the joy-yelling of watching the Superbowl with my parents.  I don’t give a rip about football, but man, you could not help but be giddy.  For days and days before the Superbowl, the entire city of Seattle was blanketed in blue and green and sheer energetic, zeal and hope.  And then, wow, I don’t care who you are, you HAD to love that game, well I guess unless you’re one of those sad, so sad Bronco fans.  Let’s just say, it was a good day to be in Seattle on Monday, February 3rd.  The air was alive everywhere you went with collective delight combined with a bit of shock that the Hawks and the 12th Man did it!  They really won.  It was fun to say the least.

Another Monday brought another clinic appointment and another weigh-in.  Allistaire’s hematocrit had dropped to 32.6 but was no longer accompanied with an automatic fear of relapse.  Her weight dropped almost a kilogram, from 16.4 to 15.5.  The doc assumed at least half a kilo was probably water-weight loss and the other half due to not eating for so many days.  She was not concerned as the weigh loss could be easily explained but said we would need to watch her carefully.  Oh but wait, I exclaimed, I forgot to dress her in her weigh-in outfit.  I determined to get another weight the next day in the proper outfit.  Tuesday brought the last day of chemo, and extra fatty dose of fluids with some added electrolytes because her phosphorus and potassium had gotten so low from all the diarrhea.  The fluids only succeeded in bumping them up slightly so I was instructed to give her supplements on the drive home the next day.  Prior to fluids she weighted a nice 16.2 kgs.  I’m not sure how that happened because I wouldn’t have guessed the sweater and pants weighed that much more than the shirt and skirt she had worn the day before, but I was never-the-less pleased.  I’ve heard of kids stuffing things in their pockets for weigh-in, knowing a feeding tube was imminent if they didn’t make their weight.  I get that.  Many how tempting to keep a big, wet diaper on her for weigh-in.  Tempting.

In the early hours of Wednesday morning, February 5th, Allistaire and I began our journey east.  The sky was just barely beginning to betray the impending morning as we drove over the floating 522 bridge.  As we ascended Snoqualmie Pass, the light illuminated a world everywhere covered in the glory of white snow.  How did God know just how beautiful that creation would be?  How the contrast of white against the dark of evergreens and rock would thrill our spirits?  The pink wash descended on the white peaks in my rear view mirrors and I did my best to multi-task driving I-90 with as many glimpses of the Stewart range spread wide in the spectacular beauty of pure snow with sheer pink morning light overlaid.  On and on we drove through endlessly beautiful sights, all skies blue and roads bare.  From near light to end light I drove, and Allistaire slept.

I marveled that the season had so shifted that I arrived home at dusk, a time as beautiful and other-worldly as dawn.  The four of us went to bed on an exceptionally cold night, but in our own beds.  I marveled that God had once again brought us home.  Thank you Father.  There will never be words sufficient to thank you for all that you have done.  Perhaps that is part of why we need eternity, eternity to marvel at all that you have done, for all your beauty, all you mercy, all your gentle kindness through times of light and dark.

“It is not possible for us to know each other except as we manifest ourselves in distorted shadows to the eyes of others. We do not even know ourselves; therefore, why should we judge a neighbor? Who knows what pain is behind virtue and what fear behind vice? No one, in short, knows what makes a man,and only God knows his thoughts, his joys, his bitternesses, his agony, the injustices committed against him and the injustices he commits.
…God is too inscrutable for our little understanding. After sad meditation it comes to me that all our lives, whether good or in error, mournful or joyous, obscure or of gilded reputation, painful or happy, is only a prologue to love beyond the grave, where all is understood and almost all forgiven.”     – Seneca

I hucked the Christmas tree out the door this afternoon.  It was satisfying, though I wished I could have launched it even further.  I wish I was a javelin thrower and could have sent that thing soaring, calculating the spectacle of its parabolic motion.  I was sick of it, with its glory stripped, now devoid of ornaments and only scraggly lights that demanded day after day to be removed.  I was pretty proud of myself really.  Sten said he’d take care of it, but I managed to get it all cleaned up with no major disasters except some sap on my pants I’m wearing for the first time in months.

Out beyond the valley the sun is lowering to the horizon, seems just to the north of the Spanish Peaks.  For a few moments the sun shone through the clouds, down in reflecting milky yellow light off of snowy fields.  The wind has been blowing for days causing incessant shifts of light and cloud and sky.  The wind chimes glinting with sound in the fir tree outside, singing as they have done for more years than I can remember, moving with us from place to place, singing the same notes, not melancholy but not cheery either, haunting, beautiful.

Time just keeps accumulating, moving, an ever-present force of reality, carrying me along with its tide.  Another Christmas come and gone.  Once more as I put away the lights, I wonder, I wonder.  What will next Christmas be like?  How will time have swept me along and like eroded rock, change the face of my life?  We returned home from Seattle safe and sound.  All went well with Allistaire and the only major sadness was that we had to cut out our trip to visit our friends in Portland due to them all being sick.  I was really so happy to be going home with several weeks before we’d have to turn around and go back.  But I surprised myself, sitting on the rec-room couch, crying the very next day, realizing I was entirely unsure of how to live my life, unsure where to step forward.

The clouds have shifted again, producing a vast triad of peach rays, diffuse like gauzy curtains draped down from the sky.  It looks like a blessing, like a kiss on the forehead of the valley, like lips reaching down over the blue of mountains.  Like the Lord telling his beloved how He cares for her.  And the sun lowers, now dipping below the clouds and the fullness of its light so immense and all-consuming, it blinds my eyes, so that all I see is truest yellow, penetrating eyelids and heart.  And it is beautiful and I know it will only last a few minutes before it will pull its light from the land as it descends behind the mountains.  Time is relentless and I both want it to stop and want to push it forward.  My life is lived in week-long segments, blood test to blood test, and shorter, meal to meal.  And shorter still, every one of her actions examined for evidence of health or catastrophe.

This morning I hit snooze three times.  I never do that.  I did not want to get out of the shower, but eventually I had to.  With nervous tingling in my lower back, I got myself ready for the day, and forced myself through all the many steps required to leave the house for yet another doctors appointment.  Last week it was a rash that showed up on her legs.  Could it be GVHD?  Could it be relapse?  I will never forget Dr. Pollard’s words in that last appointment of Allistaire’s first go at treatment, “an undefined rash can be a sign of relapse.”  Now the rays angle upward across the bellies of steel blue clouds, causing peach and pink skiffs to fill the sky.  The rash was basically gone in two days but then in her appointment we discovered she had dropped one whole pound from her appointment in Bozeman a month prior.   On the other hand she grew an inch since October which is pretty great.  Ever the question, of what does it all mean, and ever the answer, we’ll just watch it, we’ll just wait and see.  With sunset, the room, once filled with glowing light, darkens and I circle the room flipping switches and turning on lamps, pushing back the darkness and willing the day to last.

There are things one is proud of for no rational reason.  There are things we take delight in that having nothing to do with us, and are entirely out of our hands.  Allistaire’s hematocrit has always been tip-top, right up there at the very ceiling of hematocrits, pushing near 40 regularly.  That hematocrit felt like a secret stash that would guarantee safe passage.  I won’t deny it, I have scoffed at the hematocrit of others at times, smugly rejoicing in Allistaire’s fancy shmansy hematocrit that seems to always hover there at the highest heights.  It’s been dropping.  Bit by bit.  It’s still normal.  But normal doesn’t mean what it might have years ago.  Thirty-six is not normal for Allistaire.  It’s happened, but very seldom.  Today Allistaire stepped on the scale and her weight was back, up to 37.  Huge sigh of relief and thanks that all the perseverance in getting her to eat over the last week might could be helping.  But then I express my fear about her hematocrit to Dr. Ostrowski and she pulls down her eyelids, “a poor-man’s test for anemia,” she tells me.  “Yeah, they look a little pale.”  My heart drops and the tingling in my lower back returns with force and all the way to the lab and through the rhythm of drawing blood from her tubies, once again, my face is flat, the terror of what is to come, building.

An hour later I read the number 34.4 and can only think this is relapse.  We are about to be thrust once again from our home.  Once again separated from Sten and Solveig.  Once again my ferns will die.  Well, I must stick with my diet, I think.  I start to strategize how I can eat differently in the hospital this time.  No more coffee.  I cut that out almost two weeks ago.  Only salads from Starbucks.  Oh man, no more morning buns.  And I can run the stairs, all nine flights.  I’ve lost almost five pounds and I can now fit into one more pair of pants.  Now what do we need to bring with us – Allistaire’s CD player, and her colorful little clay letters that spell out her name and her eating chair.  Should I just go ahead and bring my summer clothes this time, instead of them trickling out across those 700 miles to me like the last time.  Wait, what is it going to be like this time?  What are they even going to do for her?  Can her heart even hold up to another transplant?  Will she emerge from transplant alive but in kidney failure like that other little girl I know who had transplants eight months apart?  Will Allistaire ever return home again?  What about Solveig?  We walk down the sidewalk to return a book at Country Bookshelf and the tears blur my vision and I can’t talk to the lady as I fumble in my wallet for the receipt.  Will I be torn once again from my home?

“I am your home Jai.  I am your dwelling place.”  But, Lord, but Lord, I want what this earthly life has to offer.  I know, I know, I know you’re my home.  You are my resting place.  And I wraggle in my heart with the Lord and in distress tell Him I want both.  But my life is not my own.  I don’t get to decide what comes.  I have learned these two hard truths – my love and my efforts cannot safeguard Allistaire’s life.  No matter how much I love her, my love my not overcome her being stolen away unto death.  No matter how much I exert all force of will and strength of mind, I cannot stop what may be inevitable. And I know this too – I will not stop loving her and I will not stop exerting all that is in me to come along side her on this brutal road.  But, ultimately, she is in the Lords hands.  When I told Allistaire that her sickness might be back and that we might have to move back to Seattle she said, “but that’s okay, you’ll be with me mommy.”  Oh how I wish I could respond to the Lord in the same way, “you’ll be with me Father, and that will make it okay.”

Dr. Ostrowski, our doctor here in Bozeman, relayed all the test results to Dr. Gardner in Seattle who is our acting attending doctor while Dr. Pollard is on medical leave for a few months.  Dr.  Gardner is the doctor that sat down with Sten and I on a Saturday evening two years ago and first told us that the cancer cells discovered in Allistaire’s marrow were Acute Myeloid Leukemia cells.  She is the doctor that called on a sunny winter afternoon last February 20th to say that the biopsy of the little lump in Allistaire’s back were indeed leukemia cells, and asked if we could get to Seattle the very next day to begin treatment.  She said that she believes the lower hematocrit is due to the cumulative effects of the Azacitadine that is known to increasingly lower counts the more doses received.  Some of the immensity of the fear and pressure were relieved when I heard her thoughts, but I won’t deny it, there is some strange superstitiousness one gains on this uniquely terrifying road – the sort that takes note of the bearer of bad news and anticipates a three for three with results coming up in a little over a week from the bone marrow test Allistaire will have on Monday, January 27th.   When I answer the phone on the evening of Tuesday January 28th, what will that voice of Dr. Rebecca Gardner be telling me?

We’ve been at this so long now that I constantly feel I should be used to it all.  It seems like I should have gotten over it a bit.  But I know logically that this irrational.  Death will never, ever be okay.  Separation from family and friends and home and ravishing of body will never, ever be okay.  Yes, my hope is that one day they will sit, nestled within a greater, infinitely more glorious reality that will somehow be the habitat of redemption for all sorrows.  Indeed, I pray such reality already surrounds our lives in the now, despite being invisible to my human eyes.  But – death will never be good.  I feel that I have wrestled and wrestled, trying to take the taste of death and a life radically disrupted by overwhelming illness and call it, not necessarily tasty, but at least edible.  Because it is as if every day that is what is served up before me to consume.  It is the bitter nourishment of which I am forced to partake.  It seems that most folks assume because we are home that we have jogged far from the dangers of death, that somehow because Allistaire has hair on her head and speaks with sweetest of voice and runs and laughs loud, that she is safe from harm.  “I mean, she’s in remission right?  She looks like she’s doing so great!  She’s fine now right?  This will be your last round of chemo right?”  Remission is fickle.  It is the thinnest crust of ice on a winter lake.  I don’t trust it and continue to live with the presence of that great chasm of black ever looming just to the side of our lives.

“Hear Your people saying yes, hear Your people saying yes to You, yes to anything You ask, yes to anything You call them to, hear Your people say amen, hear Your people say amen to You, let Your kingdom come on earth, let it be just like we prayed to You, yes and amen to everything that’s in Your heart, yes and amen to everything that You have planned, we live to see Your will be done and see Your perfect kingdom come on earth, on the earth, all Your promises are yes, all the promises are yes in You, hear Your people say yes, hear Your people say yes to You, yes to anything You ask, yes to anything we’re called to do, hear Your people say yes and amen to You.”  These are the words by Matt Redman, that sought their way into the forefront of my consciousness, like water seeking passage through rock.  As I stood at the kitchen counter, prepping dinner for the kids while Sten worked late, through the myriad of pressing thoughts, responsibilities, worries, and these words, repeated, “Yes and amen to You.”  And there it was so clear before me, this is what I had to swallow, this was the bitter nourishment that I need to consume to know life – I am not called to accept death or the horrors of sickness.  I am being asked to say yes and amen to anything the Lord my God calls me to.  It is His voice that is saying, Jai, dear child, sweet love, Jai, will you say yes to Me?  Will you say, Father, whatever life you give me, is the life to embrace, because it is gift from You?  Will you at long last, lay down the plans you have for your own life and truly, in your deepest core, see that your life is not your own and I am the creator, not just of the beautiful earth that surrounds you, but of the course of your life, of every single day that you have breath and every detail of your days?

I went to my Bible Study Fellowship (BSF) class on Wednesday.  I hadn’t done my lesson so I only listened as others discussed the questions on the passage in Matthew – the stories in Matthew 14 that talk about John the Baptist being beheaded, the feeding of the five thousand and Jesus walking on the water with Peter coming out, in faith, to Him.  To a number of the questions, women answered that the lesson learned was that if you put your faith in God, He will take care of you, everything will be okay.  The scream sought to burst from my skin.  “Do you call this okay?”  What I want to scream is that God is not the safe refuge we love to say He is.  You come close to God and you might just find your life ripped to shreds before your eyes.  You come close to this one we call Father, and you might just get a knife in your gut.  But I didn’t scream, instead I worked to keep the hot tears inside.  Not long later they poured forth as I spoke to a sweet grey haired woman who had been one of the teachers in Allistaire’s BSF class last year.  She asked if I remembered her and went on to tell me how much reading about our story had meant to her, but she was hedging, she was holding back.  Soon she was telling me how her sweet husband of many years was diagnosed with AML this past July and only two months later he was dead.  She could not have imagined the parallels that would be true of our two lives.  She is wounded, with deep seeping sadness, and we cried hot tears together.

That same night as I went to remove Allistaire’s dressing for a dressing change, I noticed blood.  The skin under her dressing has been having a really rough time the last two weeks and hasn’t been able to heal up and I assumed the small bit of blood to be her skin weeping.  As Sten and I went step by step through the dressing change, we suddenly saw great fat drops of brilliant blood on the blanket.  Another hole in the line, on goes the bull dog clamp, the alcohol wipe and the gauze.  I call Dr. Ostrowski and determine our plan.  Not long later, Allistaire and I are at the ER to get blood drawn for blood cultures to look for infection and to get a dose of the antibiotic Rocephin.  Because it was impossible to draw blood from her now defunct line, she had to have blood drawn from her arm.  I circled my body around her, legs entwined over her legs and arms holding down her arms and she screamed with face bright red, quick streams of tears and entire body flexing in absolute protest.  A little later, once that terror had passed, I pulled down her jammies to expose her upper thighs and the nurses came in coordinated assault, plunging the matching needles into her legs, administering the dose of antibiotic, and again the terror and tears and the circling her body in hug.

Yes, her mom was with her, but terror still struck and not just once, and she was not okay with it.  And like the Lord with John the Baptist, I could have stopped those points of sharp metal from stinging into her sweet flesh, but I didn’t.  The love of the Lord does not preclude us from overwhelming sadness and loss just as my love for Allistaire will sometimes result in me not protecting her from the harm that she is demanding and screaming she doesn’t want.  And this is why it is terrifying to say yes and amen to the Lord.  This is why the Lord is not the sort of refuge I want Him to be.  I want to make God into the image I want Him to fit.  But He will not be constrained by me.  And even as I scream and shake in fear that no Lord, NO NO NO  – Don’t take my child!  Don’t force us back into that place of relapse and daily fight for life!  Give me the life I WANT!!!!  He encircles me.  He speaks words of reassurance to me and says, “It will be okay.”

Somehow, I am starting to believe Him.  At an imperceptibly slow rate, I am releasing my life and the words, yes and amen, come a little quicker.  And it is starting to feel a little more okay.  I see that Tuesday evening, and even that Monday morning with results from her CT scan, and I can easily imagine my greatest fears crystallizing into reality once again.  And I can see my hopes for the days ahead, slipping away again into blackness of night.  And I am nestling in a bit more into the reassurance that all the days ordained for me were written in His book before one of them came to be.  More and more I am lifting my eyes, degree by degree to see that in the long view, it will be okay.  In the mean time, I may be shoved out into a small boat on a stormy sea by Jesus Himself.  He that makes the storm and can quiet the storm are the same God, a dangerous, wild, beautiful, utterly-other God, that calls me to trust, to say Yes and to know that even if the worst comes to fruition – even if like John whose head was severed from His body or like Stephen whose body was pummeled with stones, though my flesh, it be destroyed, yet with my eyes I shall see God.  Slowly He is lifting the veil and allowing me to see that the only thing that matters in this life is to say Yes to Him, to yield my life to Him and to know that in its simplest, most fundamental form, this life is about knowing God and making Him known.  It is His to determine how this will be manifest in my one little life and who I am to say what means are best?  So I hold much more loosely the plans that I have for myself, and not just because I am forced by circumstance to do so, but now too, because I long to, I delight to.

Beware what songs you sing in church or to yourself as you listen running or in the car.  Beware what you say you are agreeing to with this God.  He is asking for everything, and that’s the thing – I know He’s not done with me.  He’s persistent and He wants more of me.  More and more He wants sovereignty over the terrain of this life of mine.  As another Tuesday, and thus another set of labs, draws near, the sour taste of fearful relapse begins to rise, and even if this Tuesday is fine, what of the next set of test results the week following or the next month or the next?  I even fear His gracious sanctifying of my heart because it may signal His preparing me for harder days ahead.  But I thank Him for all that He has done, even for the scars that have disfugured because against all rational argument and by mysterious means, these knives to the gut, these ravaging have left me broken but more alive.  I am mysteriously fragile and gloriously resilient at the same moment. These wounds have been bound by the Lord, binding me more and more to Him and I am tasting life.

Yes and Amen Lord, yes and amen.  Hear this child, with weak voice, saying yes to You, yes to anything You ask of me, yes to everything You have planned.  Yes and Amen sweet, wild Lord.