Monthly Archives: July 2013



IMG_3595Thoughts and feelings, observations hit like a gentle smattering of shotgun pellets, if such a thing is possible.  My hands run lightly over the bent arches of grasses.  I circle Ravenna Gardens like a crack addict in a back alley, longing for the day when I can, once again, be surrounded by plants.  I calculate when I can buy a fern: September 18th; 3 months post-transplant.  I went grocery shopping for the first time in five months.  Real grocery shopping – I bought baking powder and flour, determined to make pancakes.  Chocolate chip and apple pancakes with wheat germ have not entered my mouth in five months.  The last time I made them was for dinner on Tuesday night, February 19th, knowing it might be the last time we four gathered at the counter to feast at home.  Allistaire has slept in a bed for the past six nights that has no capacity to contort into a hundred different positions, yet a line runs down from her chest to a pump delivering 25 ml of fluids each hour.  We’ve already been to Target three times this week as I seek to stock up on all the things I haven’t had to think about in forever: toilet paper, wipes, Pam cooking spray.  With care I wipe down every surface of the cart I imagine Allistaire might touch and then I lift her enormous 17.5 kg body into the seat.  Out of my periphery, I see heads turn to look at the little bald girl.  This is homelife-ish.

I make breakfast in a strangely equipped kitchen, lacking measuring spoons, a colander and a decent can opener.  But before breakfast comes the process of matching the rinsed syringes with their proper bottles, referencing the med list and refilling them to correct dosages.  I bring the pile of syringes to Allistaire, along with two mini-marshmallows.  Every single time she fights me and cries and says it’s yucky.  “I know it’s yucky, but we have to do it.”  The line between health and sickness ever blurred.  After threatening to take away Doggie, she yields and in quick succession I push out the contents of 12 syringes into her mouth, followed immediately by the marshmallows.  Scanning for rashes and any changes in her flesh, I change her out of jammies into clothes for the day.  Soon the pump begins its relentless beeping, indicating the empty state of the “reservoir.”  I disconnect the nighttime fluids and flush her line, first with saline and then with heparin.  At breakfast, she eats voraciously at the beginning and then inevitably drops her head, her eyes sad slits as she holds her hand to her strangely distended tummy, now too big for even size 4T.  Sometimes she gets a second wind and often I wrap up what’s left to be gulped down later with her next wave of hunger.  Crankiness and an amazing appetite – oh the joys of steroids.  Every detail of food and liquid I record on the sheet stuck to the fridge.  I want her to get credit for every last calorie and millilitre of liquid.  I even calculated how much liquid she gets in meds and was dismayed as I stared at the number on the calculator.  All those 23-something doses of meds only equates to about 2 ounces.  She requires 43 ounces of fluids each day to help keep her kidneys up to flushing all the gunk from the meds through her system.  Try as I might, I cannot seem to get more than 30 ounces in her a day, hence the need for night-time hydration.  I clean up the kitchen, rinse the syringes and record the one or two poopy diapers that come like clockwork each morning.  I circle picture #6 – soft and formed.  We are now ready to begin the day.

“Can I watch a movie,” she asks as she stands before me, Doggie and piggy in each arm.  “No.  You’re not in the hospital anymore.  Why don’t you go play with some of your toys?”  She cries.  I am mad and want to hold her and press her to me all at once.  I think to myself, “You’re not sick anymore.  We have to move forward.  You need to start living life like a normal three-year old.”  But my heart hangs laden as I take in the view of her sweet, warm bald little head with the sporadic white hairs.  “Are you sick?  I have no idea.”  I have no idea if this sweet girl just needs time to mend or if this is simply a beautiful lull in this brutal storm.  Either way I cannot comprehend what has been done to her insides.  I have no clue what it feels like to have poison dumped into your veins for five months.  Of course she wants to watch a movie.  She has spent the majority of each day in bed and watched no less than three to four movies a day for months.

I did not anticipate the weight of the fatigue.  I still get up every night around 1 or 2 am to give her meds and change her diaper but surely with no other interruptions I should be getting better rest.  Yet, I wake up shockingly tired.  I cry more than I feel I should.  I tell myself, “You’re not in the hospital anymore.  Her bone marrow was clear twelve days ago.  You should have only room for rejoicing.”  I cry, slow, silent hot tears as I sit out in the sun on a glorious afternoon.  Solveig makes quick friends with the  little girls in the lake with the raft and spends long minutes constructing an ever precarious sand castle with another girl who comes prepared with shovels and bucket.  I feel a slight sense of failure as a parent who has provided none of these for my child.  Families surround me and the smell of charcoal is distantly detectable.  In the glaring contrast of sun and shadows, I feel the stinging prick of sorrow.  Somehow summer’s brightness serves to illuminate the deep sense of loss.  I grieve and I berate myself for doing so.  Blurred lines.  Rejoicing overlapped with layers of sadness.  Abundance and victory sown through with declarations of defeat and tears and rips.  Yes, I sit here in Tutta Bella on a sunny Sunday afternoon, enjoying the meal I would I would choose if it were my very last, a Napoli salad without the gorgonzola and fresh mozzarella added.  But I feel like screaming until my voice is silenced and my throat ravaged.  I just want to be home.  I just want my family together.  I just want to do ordinary things.  I am sure I looked a fool as I walked down the sidewalk at U-Village, eyes closed as I soaked in the sensation of cool winds ruffling across my arms and through hair, the bright warmth of sun laying across my face.  These days have made my whole being more attuned.  My senses have deepened and broadened, the caverns torn open to receive.  Just to be alive is spectacular.  Everyday my marrow busily creates approximately 200 billion new red blood cells!  I am stunned to be so attuned to the simultaneous wonder and pettiness of what it is to be human.  I am in awe that four million dollars has been spent on my one child – an incredible proclamation of how much we value the life of one individual.  I am shamed by my envy over perfect thighs, utterly lacking cellulite, of the girl waiting for her coffee.  How can I care about dimply fat?  But this is how we live, spanning all layers of vantage point and value.

The same circumstances that have wounded my heart and left it tattered, the ground violently ravaged by the plow, have made gaping depressions swelling with amazed thanks.  As I floated through the airy sights of Anthropologie, Solveig off smelling the myriad of candles, Dr. Park came into view.  There she stood, an ordinary person out shopping in the early evening, wearing a red tank top like it was the most ordinary thing to do.  “I heard your good news,” she said with a smile.  It was all I could do to hold back the tears and simply thank her.  I mean to write her a letter, and not just she, but all of the doctors that have been part of our journey.  We only had her as our attending doctor for two weeks, over a year ago, and yet, like so many doctors, she has rejoiced with us over this victory, and no doubt grieved over the defeats.  That she would be able to pick me out in a store, outside the context of the hospital, and connect me to Allistaire and know how my one little girl is fairing, is well, humbling, glorious.  I bend low with tears and gravity of gratitude for the innumerable people who have given of their lives to come to the aid of one little life who is infinitely valuable to me.  More tears fell this morning in Starbucks as I read this sentence, “The first protocol was launched to test different doses of Farber’s methotrexate combined with Burchenal’s 6-MP, the two most active antileukemia drugs.” I am a little over a hundred pages into one of the most fascinating books I have ever read, “The Emperor of All Maladies,” by Siddhartha Mukherjee.  I am learning all about the history of cancer.  It is fascinating to see the significant role that childhood leukemia has played in the development of cancer treatment.  Unlike other cancers, you cannot wield a knife and cut out leukemia and so everyone with leukemia was simply sentenced to die.  But the glorious quality of leukemia is that it is measurable in a way that solid tumor cancers are not.  For decades a man named Sidney Farber was hot on the trail of trying to discover what sort and combination of chemicals might bring about the death of leukemic cancer cells and produce a sustained remission.  “Farber’s methotrexate.”  Allistaire has been treated with methotrexate.  Allistaire is directly indebted to a man who was hard at work over 70 years before she was born.  There was a man who worked countless hours with absurd amounts of defeat and few victories, whose efforts would one day directly benefit my child.  Does it not blow your mind?  Who are we to receive from this one man who gave his life to this work, lifetimes ago?  As I now repeatedly, drive downtown to SCCA (Seattle Cancer Care Alliance), I take in the view of innumerable windows of the Fred Hutchinson Cancer Research buildings that surround.  I imagine the scores of people who come to work each day, who labor hundreds of thousands of hours to bring about the end of this brutal disease.  I wonder how many of us, how many of our children and great, great-grandchildren will be the recipients of their efforts and endurance.  I grin as I imagine the moment when one thought gets connected to another and a remarkable discovery is made.  I grin as I imagine God’s grin as He watches the beauty of His plans unfold.  “Thy Kingdom come, Thy will be done, on earth as it is in Heaven.”  Amen and Amen.IMG_3586 IMG_3591 IMG_3593 IMG_3597 IMG_3601IMG_3625 IMG_3626 IMG_3638 IMG_3645 IMG_3660 IMG_3670 IMG_3680 IMG_3687 IMG_3690 IMG_3692 IMG_3696 IMG_3704

Stepping Out


IMG_3574So the thing about cancer is you never really know if it’s gone.  You want to just lean back and soak in the good news and forge ahead with life – leaving the horrors behind.  But in a flash, you fear the dark head of its return out of the corner of your eye.  You watch the strange tip toe walking of your child and how she grips the back of her knees in pain.  Immediately your mind is scanning through the possibilities.  You assess the situation from every vantage point you can muster.  How is she eating?  How is she sleeping?  How is her attitude?  What could be causing the pain? Muscles?  Lymph nodes?  She told me once a few days ago the bottom of her heels hurt – is that why she’s walking that way?  Or is it the pain behind her knees that may somehow be alleviated by this tip toe walking?  She’s now on steroids and that seems to have made her more grumpy, or is she more grumpy because she is experiencing pain?  The cancer seemed to have spread to the lymph nodes behind her knees in the week before conditioning for transplant – could it be back and that be the source of the pain?  Well, she hasn’t said anything about the front of her knees hurting, nor the lymph node in her armpit – of course that one was radiated.  On and on it goes, your mind racing – your enjoyment of the evening tainted.

You see, we’ve had “no detectable cancer” before.  We’ve had four flow cytometry tests at zero percent from the first time she was treated for AML.  We’ve had perfect cytogenetics and morphology.  And it was still there – somehow the cancer still lurked, unseen.  So while I utterly rejoice at these glorious test results on Day +28 from transplant – all three perfect – bone marrow aspirate, morphology and cytogenetics – you know these are no guarantee.  And so, I am ever on the alert, always keeping watch over every detail, every nuance.  And already it makes me cranky and edgy and short with Sten.  My voice is not kind and it is hard to not focus on the fear.  “I can’t do this again,” I think.  “Please don’t make me go back there Lord.”  For no matter how much I continuously strive to surrender my life and yield to the Lord, whatever the circumstances, I still desperately want my child to live.  I say to God, “Father, your will be done, but oh please, let your will be that my beloved live.”  I know that the test results are absolutely no guarantee of the days ahead and I know that they do demonstrate an incredibly wonderous reality at one point in time.

I have prayed often in these last several months, that if we do get to bring Allistaire home to live, that God would show me the way to live differently this time – not so gripped by the crushing weight of fear.  As a mom, of course I attend to every detail of Allistaire’s well-being and this experience has given me cause to be far more attuned to her than I even naturally would be.  I have to speak for her, as she can only provide a three-year old’s voice.  She is largely unable to articulate the specifics of how she feels and I am left to be the interpreter.  Tonight I am wondering if we need to do some sort of scan to look at the back of her legs, but I really don’t want to – I really don’t want to see cancer there.  I’ve never been one to push away realities and look away, but man is it tempting.  I want to leave the hospital on Monday rejoicing and focused on getting through the next stages of healing from the transplant process.  But this is part of it, wondering and looking out for the cancer’s return.

As of today, Allistaire is off of all IV meds and is only getting IV fluids at night.  She has confirmed GVHD in her upper and lower digestive tract and as a result, is now on four additional oral medications. She has been getting Tacrolimus from the beginning as an immunosuppressant.  She is now on the low dose steroid, Prednisolone, which creates a body-wide, systemic suppression of the immune system to counteract GVHD.  Additionally, she is on Beclomethasone which coats the esophagus and stomach and Budesonide, which coats the walls of the intestine.  These are both essentially, internal topical steroids.  Omeprazole (Prilosec) is used to reduce the acid production in her stomach since she seems to have some evidence of reflux as well.  All total she is on 12 different daily meds resulting in twenty-two doses of medicine a day that she is required to take.  The additional meds help the heart and liver, protect against viral and fungal infections and Pneumocystis pneumonia, and provide a few additional necessary nutrients.  On the surface, Allistaire seems to have a robust immune system, sporting an ANC of 6092 as of her most recent CBC (Complete Blood Count).  Yet in reality, the donor marrow is still just getting established and some of the various white blood cells will not be up to normal, healthy levels for up to 6 to 9 months post transplant.  On top of it, she has immunosuppressant drugs to combat GVHD but which also have the effect of suppressing the production of a number of white blood cell types which are crucial parts of the immune system.  Some of the suppressed cell types include T and B cells.

As of now, we are scheduled to discharge on Monday, July 22nd.  Sten and I have been watching videos, going to class and meeting with the transition nurse to get all prepped on life outside the hospital.  There will be a lot of changes, not just from living for the last 147 days institutionalized, but even quite different from before Allistaire was sick – very different even from the last time she left the hospital after treatment.  All these changes warrant an entire post of their own, which will have to wait for now.  On Monday we will be given all her initial meds to take to our apartment at Ronald McDonald house and from now on she will have clinic appointments every Tuesday and Friday at Seattle Cancer Care Alliance in downtown Seattle.  Each clinic day she will have labs drawn and meet with the PA or Nurse Practitioner, the attending doctor, the nutritionist and often the pharmacist as well.  If she were to have a fever or any other significant change we would likely be readmitted to Children’s for an inpatient stay while they assess and treat her.

If all goes as smoothly as possible, with no relapse of her cancer and controlled GVHD, the absolute soonest we would be able to return home to Montana would be 100 days post transplant.  This puts us here in Seattle at least until October.  This is such a daunting thought, yet I constantly remind myself that returning in October with Allistaire alive and well would be an incalculable gift.  I miss home, boy do I miss it but it almost seems like a fairy tale place.  It is often hard for me to believe I really have a life there. I didn’t recognize my own driveway in a video Sten sent me of Solveig riding her new bike.  It is weird to have to ask your husband what your child is up to these days.  Five months ago today, I saw that I had a missed call from Seattle Children’s Hospital.  As I listened to the voice of Dr. Gardner asking me to call her back, I knew.  I knew that biopsy result had confirmed that Allistaire had relapsed.  My face and heart have never hurt as bad as they did that night.  I had seen enough the first time around to know what did and could lie before us.  That seems forever ago.  I’ve been home five days in five months.  Life before cancer seems forever ago.  I watched kids running across the grass this evening.  I watch their bodies moving, their mom along side and I wonder what it is like to not constantly fear what is going on inside your child’s body.  I have a healthy child.  I do know what it’s like and I don’t.  The wondering will now always be there with Allistaire.  Cancer casts a cold shadow once it has entered your life.  Even with amazing test results less than a week ago, I am left wondering.  Her bone marrow is clear but what about the rest of her?

The Lord broke down a mighty wall and expanded my borders.  Yet I still see walls, walls that define the contours of my life, walls that I grumble over and curse and in whose presence I cringe.  I have seen the face of my Father thousands of times, but still I must turn back to Him.  Hebrews 4, calls the child of God to, “make every effort to enter that rest,” the, “Sabbath-rest for the people of God.”  Such a strange admonishment to “make every effort,” to enter, “rest.”  Aren’t the ideas of “effort,” and “rest,” opposed?  What I know is that I do not naturally rest in the Lord.  What is natural for my flesh is to be at “unrest.”  I am prone to anxiety and listlessness.  I am prone to gripping my troubles in my own fists, turning them over this way and that, trying to find a way to make them into what I want.  I try to fancy up my walls, chisel in hand. Rather, I must choose to turn.  Sometimes I find it far too much for me to even slow the inertia of going my own way, that I might turn to the Lord.  “Help me turn to you, Lord.”

“Let thy goodness, like a fetter, bind my wandering heart to Thee.  Prone to wander, Lord I feel it, prone to leave the God I love.  Here’s my heart, O take and seal it, seal it for Thy courts above.”IMG_3492 IMG_3508 IMG_3517 IMG_3524 IMG_3531 IMG_3539 IMG_3557

My Boundary Lines Have Fallen In Pleasant Places


IMG_0292Psalm 16

“Keep me safe, my God,
for in you I take refuge.

I say to the Lord, “You are my Lord;
apart from you I have no good thing.”
 I say of the holy people who are in the land,
“They are the noble ones in whom is all my delight.”

Those who run after other gods will suffer more and more.
I will not pour out libations of blood to such gods
or take up their names on my lips.

Lord, you alone are my portion and my cup;
you make my lot secure.

 The boundary lines have fallen for me in pleasant places;
surely I have a delightful inheritance.

I will praise the Lord, who counsels me;
even at night my heart instructs me.

I keep my eyes always on the Lord.
With him at my right hand, I will not be shaken.

 Therefore my heart is glad and my tongue rejoices;
my body also will rest secure,
because you will not abandon me to the realm of the dead,
nor will you let your faithful one see decay.

You make known to me the path of life;
you will fill me with joy in your presence,
with eternal pleasures at your right hand.”

“My boundary lines have fallen in pleasant places.”  I had already decided that this was the title for this post, regardless of the outcome of Allistaire’s bone marrow test.  It would be a willful believing, that such is true, regardless of my circumstances.  I wanted to take possession of such truth whether the news was what we have so hoped or what we have most feared.  I thrust a marker in the ground and say that here, this is where the Lord, out of His infinite kindness, has chosen to direct my life.  Sten and I long ago, when Solveig was just a wee baby girl, decided that rather than saying, “No,” all the time to her, we would use the phrase, “out-of-bounds.”  As skiers, we are well acquainted with the dangers of being out-of-bounds.  You are told to stay within the bounds out of care for your wellbeing.  As humans we revile being told we cannot go somewhere or do something.  The line or the law, makes the rebel in our hearts rise up all the more.  We are just licking our lips to cross over – to test the waters.  We don’t really believe our wellbeing is what is at stake – we are confident something is being withheld from us, something that we should have, something we have the right to have.  Paradox is part of what spurs on my faith.  Over and over I find that the truth of God defies our logic, our reasoning.  God says we are slaves to sin, so He wants to free us from that but then He says, hey – be bound to Me.  Why would I want to escape from slavery just to be enslaved all over again?  According to God, being constrained to Him is the source of all goodness and life.  So – you’re tired and weary?  Take this yoke, this implement of hard labor – put this on your back.  That makes no sense.  Oh wait, until I see that I am bound to the Living God whose strength is made perfect in my weakness.  Mysteries.  Beautiful.

Over the years this 6th verse of Psalm 16 has been settling its way deeper and deeper into the cracks of my heart.  My boundary lines – those ways that my life is contained – those ways my life is not – they have fallen in pleasant places.  So often I look around at my life, and think, “Nope, not pleasant, not appreciating these defining lines you’ve set up in my life Lord.”  I have spent so much time worrying and contemplating how to get over these wretched walls that close in my life.  I have beaten at the wall and roared at them in fury.  I have cried in a heap against these monoliths.  I have despised my constraints.  Two and a half years ago, nearly a year before Allistaire first got sick, the Lord first said to me, “This is your life, Jai.  Right here, within these walls.  This is where I have you.  Stop spending all your time and energy trying to knock down walls.  Look at the life I have given you.  It is no mistake.  It is not some accidental alternate path.  It is not an oops or a second-rate option.  It is my beautiful intention for you.  This is the place where I will turn darkness into light.  This is the place where life will grow up out of the muck of death.  This is the place where I have called you to love and to have eyes to see me.  This is where I want you to expend your energies.  This is where your boundary lines have fallen.  Trust me.  If and when it is time to remove one of these walls and move you away from this place – it is nothing for Me – it is no effort or challenge.  I will accomplish my good plan for your life.  Rest.  Crumple into me.  Wait on Me.  Watch for what I will do.”

The Lord my God has given me many walls – walls that have closed in and seemingly cut off the sun.  But just as there will be no need for the sun in heaven because the glory of the Lord will illuminate all things – so I can turn my back on the walls and fix my gaze on Him.

Today, God was pleased – No, I think He is pretty much probably down right giddy – My Father knocked down a wall.  A wall that felt insurmountable, impenetrable, unyielding – got a hole busted right through it!

Around 4:30pm, I was curled up around Allistaire in her hospital bed.  I napped while she napped for the very first time since entering the hospital in February.  My mental, emotional and physical exhaustion warranted a nap with my little sweets.  Without even attempting stealth or quiet, Dr. Burroughs burst into the room and through the curtain.

“Hematopathology Report:  Interpretation:  Bone Marrow, aspirate:  No abnormal myeloid blast/monocyte population identified.  Comment:  There is no immunophenotypic evidence of residual acute myeloid leukemia by flow cytometry.  Correlation of these findings with morphology is recommended.”

Did ya get that?  There is no detectable cancer!  We still await morphological and cytogenetic tests, but they are highly unlikely to contradict the flow cytometry test.  Zero percent.  An unbelievably small number.  An impossibly small number.

Glory be to God in the Highest!  Check you out – knocking down a wall like it’s nothing.

Day +28 Bone Marrow


IMG_3487Tomorrow I may be told my child is going to die.  “Fingers crossed.”  “Well, let’s hope for the best.”  On and on the responses to this reality go.  No one wants to hear it.  No one wants to have to look that possibility straight in the face.  It is no longer some peripheral possibility.  There is an air of “you can’t say that…you can’t talk that way…you have to stay positive.”  Allistaire Kieron Anderson came from my flesh.  I felt her at 14 weeks and I have to face the real possibility that this child that I love with my whole heart may soon be gone.  I am the one who will have an empty car seat, a room that was just prepared with a big girl bed and is now unused.  I am the one that will have only one little girl, a sisterless child.  Our family will only require three chairs at dinner.  I am the one who will have pictures of a face that will one day have to be explained.  I may have to drive 700 excruciating miles home to Montana to eventually bury the flesh I have so intimately cared for in every detail for the last 41 months.   I cannot look away from that.  I look at her sweet face.  I listen to her adorable voice.  I watch her mannerisms and I know I must treasure them.  They may soon be lost.  I know the faces of those who have died, the names of those that are no longer with us no matter how strong they were or how positive their parents remained.  Sara.  Ruby.  Mia.  Johanna.  Mario.  Nolan.  Jaxon.  Benton.  Pantpreet.  No matter how strong we are, no matter how many resources we can mount, sometimes disease overcomes it all and steals away our beloveds.  It feels like tomorrow is a sentencing.  If the verdict is death, they take her out to the yard.  There is no appeal process left.  I didn’t sleep well last night.  I was restless and had scary dreams.  Tomorrow might be a day of ecstatic celebration or it may be the hardest day of my life so far.  Tomorrow evening may be cause for ordering take-out from an amazing restaurant.  Tomorrow evening – well, I cannot even fathom the intensity of that pain – like having the flesh torn from your bones.  The doctors are talking about us being discharged next Monday.  Today marks the 142nd straight day in this hospital.  I want to be so excited about finally being at this point and being able to at last live outside these hospital walls.  Will I be packing away her clothes and shoes and toys with joy and victory or in sorrow and defeat?  Good news tomorrow is no guarantee of future days with Allistaire, but it would be a phenomenal accomplishment.  It would be worthy of untold rejoicing.  I think often of how many other families, how many moms and dads, walk these halls waiting for results, waiting to behold the direction of their lives.  I am merely one of many who face such things.  I have been the mother who was given the gift of walking out of these doors, child in hand.  I may be the mother who walks out essentially empty-handed.

Today at 10am, marks Allistaire’s eleventh bone marrow test.  Unlike all previous bone marrow tests, this one will go to Fred Hutch for both morphology and flow cytometry because she is now a bone marrow transplant patient.  This means that we will actually get the more accurate, precise, flow cytometry test results first.  We should have results sometime late tomorrow.  I need to ask that no one, not even family and close friends, contact us asking for results.  We will make known the results in the timing and way we are able and feel is best.  So no emails, phone calls or texts asking for results.  Sten and I will be together tomorrow.  We will wait in the quiet room down the hall from Allistaire’s room.  Dr. Burroughs will come at an agreed upon time and she will give us the results.  Please honor our need to process this in our own way and our own timing.  If tomorrow you feel the acrid taste of nervousness or the claminess of hands who wait, know that you are tasting our reality in the slightest and allow it to grow your empathy.  Sit with it and let it bother you.  Pray for us.  Pray for our hearts before the Lord.  Pray for peace that passes understanding.

One of the hardest things I have learned these past nearly five months, is that knowing God doesn’t take away hard realities and pain.  We want to believe that as children of God we are exempt.  We want to believe that having an eternal perspective will make the pain of this earthly life so much less.  We want to think that we won’t have to have so much sorrow and loss – that we will be protected from such trials.  Who are we to think that we, who have the Lord, should not have to know the sorrows of those who don’t know God?  God allows us to walk these wretched roads because there are others who also walk them.  There are others who walk in darkness and are desperate for the light and hope.  I know the God who turns this darkness into light.  These dark days grow compassion and intensify my desire to share the hope of this light.  As a being dwelling on this earth, the primary purpose of my existence is to love the Lord my God with all my heart, soul and mind.  How can I shun the things that allow me to see Him more fully?  How can I despise these, “seeing through to God places?”  I do walk in this suffocating darkness.  But isn’t it glorious to be witness to the inconceivable reality that God can turn that which threatens to choke out our life, into the very air that grows us more beautiful?  I will not try to make the pain more palatable.  I will not try to diminish it or call it less than it is because the immensity of this pain illuminates the immensity of God’s glorious promises – both for the present and for the future.  This pain demonstrates the scale of what God is up to.  So here they sit – side by side – the pain and the sorrow and the brokenness right up against the goodness and kindness and faithfulness of the God who both calls the stars out each by name and who knows when I lay down and when I rise.

One of the things in life I am most grateful for are my fellow believers in Christ that have gone before me in faith.  They walk the road ahead of me, and sometimes, their words echo backwards for my ears and heart to consider.  I am blessed and encouraged and spurred on by the days they have walked with the Lord.  When Allistaire was first sick, it was Christmas time and I had just picked up an Advent devotional.  One section in particular has had one of the most significant impacts on my heart this past year and a half.  Below I have typed out the words of Henri Nouwen from his work, “A Spirituality of Waiting.”  I have italicized the parts that have profoundly molded my heart and mind.  The core idea is this – I choose to call out to the Lord and ask with hope for His beautiful, glorious version/image of my life – I do not constrict the possibilities by demanding and putting all my energy into my narrow view of good and best – I seek to live open-handed – looking expectantly for what He is up to – I look expectantly to the unfolding of a plan and a beauty that would knock me down – a beauty that would change me utterly as it did to Moses when he briefly looked upon God.

Come Lord.  Come and act – according to your Holiness – your utter otherness – your utter glory and beauty that defies my finite imagination.  Holy, holy, holy is the Lord Almighty!

“Waiting is not a very popular attitude.  Waiting is not something that people think about with great sympathy.  In fact, most people consider waiting a waste of time.  Perhaps this is because the culture in which we live is basically saying, “Get going!  Do something!  Show you are able to make a difference!  Don’t just sit there and wait!”  For many people, waiting is an awful desert between where they are and where they want to go.  And people do not like such a place.  They want to get out of it by doing something.

In our particular historical situation, waiting is even more difficult because we are so fearful.  One of the most pervasive emotions in the atmosphere around us is fear.  People are afraid – afraid of inner feelings, afraid of other people, and also afraid of the future.  Fearful people have a hard time waiting, because when we are afraid we want to get away from where we are.  But if we cannot flee, we may fight instead.  Many of our destructive acts come from the fear that something harmful will be done to us.  And if we take a broader perspective – that not only individuals but whole communicates and nations might be afraid of being harmed – we can understand how hard it is to wait and how tempting it is to act.  Here are the roots of a “first strike” approach to others.  People who live in a world of fear are more likely to make aggressive, hostile, destructive responses than people who are not so frightened.  The more afraid we are, the harder waiting becomes.  That is why waiting is such an unpopular attitude for many people.

It impresses me, therefore, that all the figures who appear on the first pages of Luke’s Gospel are waiting.  Zechariah and Elizabeth are waiting.  Mary is waiting.  Simeon and Anna, who were there at the temple when Jesus was brought in, are waiting.  The opening scene of the good new is filled with waiting people.  And right at the beginning all those people in some way or another hear the words, “Do not be afraid.  I have something good to say to you.”  These words set the tone and the context.  Now Zechariah and Elizabeth, Mary, Simeon and Anna are waiting for something new and good to happen to them.

Who are these figures?  They are representatives of the waiting Israel.  The psalms are full of this attitude:  “My soul is waiting for the Lord.  I count on his word.  My soul is longing for the Lord more than a watchman for daybreak.  (Let the watchman count on daybreak and Israel on the Lord.)  Because with the Lord there is mercy and fullness of redemption” (Psalm 130:5-7).  “My soul is waiting for the Lord” – that is the song that reverberates all through the Hebrew scriptures.

But not all who dwell in Israel are waiting.  In fact we might say that the prophets criticized the people (at least in part) for giving up their attentiveness to what was coming.  Waiting finally became the attitude of the remnant of Israel, of that small group of Israelites that remained faithful.  The prophet Zephaniah says, “In your midst I will leave a humble and lowly people, and those are left in Israel will seek refuge in the name of Yahweh.  They will do no wrong, will tell no lies; and the perjured tongue will no loner be found in their mouths” (Zephaniah 3:12 -13).  It is the purified remnant of faithful people who are waiting.  Elizabeth and Zechariah, Mary and Simeon are representatives of that remnant.  They have been able to wait, to be attentive, to live expectantly.

But what is the nature of waiting?  What is the practice of waiting?  How are they waiting, and how are we called to wait with them?

Waiting, as we see it in the people on the first pages of the Gospel, is waiting with a sense of promise.  “Zechariah..your wife Elizabeth is to bear you a son.”  “Mary…Listen!  You are to conceive and bear a son” (Luke 1:13, 31).  People who wait have received a promise that allows them to wait.  They have received something that is at work in them, like a seed that has started to grow.  This is very important.  We can only really wait if what we are waiting for has already begun for us.  So waiting is never a movement from nothing to something.  It is always a movement from something to something more.  Zechariah, Mary and Elizabeth were living with a promise that nurtured them, that fed them, and that made them able to stay where they were.  And in this way, the promise itself could grow in them and for them.

Second, waiting is active.  Most of us think of waiting as something very passive, a hopeless state determined by events totally out of our hands.  The bus is late?  You cannot do anything about it, so you have to sit there and just wait.  It is not difficult to understand the irritation people feel when somebody says, “Just wait.”  Words like that seem to push us into passivity.

But there is none of this passivity in scripture.  Those who are waiting are waiting very actively.  They know that what they are waiting for is growing from the ground on which they are standing.  That’s the secret.  The secret of waiting is the faith that the seed has been planted, that something has begun.  Active waiting means to be present fully to the moment, in the conviction that something is happening where you are and that you want to be present to it.  A waiting person is someone who is present to the moment, who believes this moment is the moment.

A waiting person is a patient person.  The word patience means the willingness to stay where we are and live the situation out to the full in the belief that something hidden there will manifest itself to us.  Impatient people are always expecting the real thing to happen somewhere else and therefore want to go elsewhere.  The moment is empty.  But patient people dare to stay where they are.  Patient living means to live actively in the present and wait there.  Waiting then is not passive.  It involves nurturing the moment, as a mother nurtures the child that is growing in her.  Zechariah, Elizabeth, and Mary were very present to the moment.  That is why they could hear the angel. They were alert, attentive to the voice that spoke to them and said, “Don’t be afraid.  Something is happening to you.  Pay attention.”

But there is more.  Waiting is open-ended.  Open-ended waiting is hard for us because we tend to wait for something very concrete, for something that we wish to have.  Much of our waiting is filled with wishes:  “I wish that I would have a job.  I wish that the weather would be better.  I wish that pain would go.”  We are full of wishes, and our waiting easily gets entangled with those wishes.  For this reason, a lot of our waiting is not open-ended.  Instead, our waiting is a way of controlling the future.  We want the future to go in a very specific direction, and if this does not happen we are disappointed and can even slip into despair.  That is why we have such a hard time waiting: we want to do the things that will make the desired events take place.  Here we can see how wishes tend to be connected with fears.

But Zechariah, Elizabeth, and Mary were not filled with wishes.  They were filled with hope.  Hope is something very different.  Hope is trusting that something will be fulfilled, but fulfilled according to the promises and not just according to our wishes.  Therefore, hope is always open-ended.

I have found it very important in my own life to let go of my wishes and start hoping.  It was only when I was willing to let go of wishes that something really new, something beyond my own expectations could happen to me.  Just imagine what Mary was actually saying in the words, “I am the handmaid of the Lord…let what you have said be done to me” (Luke 1:38).  She was saying, “I don’t know what this all means, but I trust that good things will happen.”  She trusted so deeply that her waiting was open to all possibilities.  And she did not want to control them.  She believed that when she listened carefully, she could trust what was going to happen.

To wait open-endedly is a radical attitude toward life.  So it is to trust that something will happen to us that is far beyond our imaginings.  So, too, is giving up control over our future and letting God define our life, trusting that God molds us according to God’s love and not according to our fear.  The spiritual life is a life in which we wait, actively present to the moment, trusting that new things will happen to us, new things that are far beyond our imagination, fantasy or prediction.  That,  indeed, is a very radical stance toward life in a world preoccupied with control.IMG_3383 IMG_3402 IMG_3410 IMG_3424 IMG_3484




There is a little girl I know who is on the move.  With eagerness, she swiftly goes from one activity to another.  The other day she continuously informed me that she wanted puzzles – two puzzles – an elephant puzzle.  She wants to play blocks, paint, ride her bike, go for a walk, dance to music.  I listen with a smile to her sweet voice as she sings in the bathtub or tells me of her desires and ideas.  She laughs and tells me she is just teasing me.  Silly voices and silly expressions, she engages all who encounter her.  The skin on her back, arm pit, hands and neck all continue to heal and return to their natural color of healthy flesh.  Her hands no longer shake and her gait as she walks, is more and more steady.  She is unfurling.

More and more we leave behind the flying buttresses that have sustained her.  The mighty IV pole has been reduced from 8 pumps to a mere three.  She is taking all of her meds by mouth that is possible at this point.  No longer is she on Lasix, as her fluid levels have mostly stabilized, making it necessary to only weigh her once per day.  Her blood pressures are almost always now in the appropriate range.  She has begun to eat a little and drink water.  Apparently it may take months for her appetite and taste buds to return to normal as a result of the mucositis.  The whole milk that was once one of her main sources of calories and fluid intake has been utterly rejected.  It is a challenge to find things that appeal to her.  Thank goodness for Burgermaster fries and ketchup which are enjoyed at least daily.

As for infections, Allistaire thankfully tested negative for the nasty C. Diff.  However, she still has some seriously runny diapers.  This, combined with her minimal eating, suggests to Dr. Burroughs that she may have some GVHD (Graft Versus Host Disease) in her gut.  The plan was to scope her late in the week down from the top and up from the bottom.  I was eager to have some more concrete info so that I would know better how to deal with the challenge of her eating.  Sadly, despite Dr. Burroughs skillfully managing to get Allistaire on the GI schedule for Friday morning, the procedure was abandoned due to a new development.  Tuesday night Allistaire coughed a few times in the night and threw up once.  Wednesday night the cough returned along with a very stuffy nose.  The overnight hospitalist doctor instituted “viral isolation,” and ordered a nasal wash and a chest X-ray for the next day.  While the X-ray looked great and clear, the nasal wash confirmed that she now has rhino virus.  Of course this is a bummer, but I was just so relieved that she was negative for RSV.  I swaggered a bit in my heart as I gloated over her hefty ANC of nearly 2400.  She can handle a bit of rhino virus I thought to myself.  It was decided to wait on the scope until early this coming week, however, because of the concern of anesthesia when she has so much nasal congestion.  Dr.  Burroughs did not think her possible GVHD symptoms are of such significance that we can’t wait a few days to see what direction things head with this virus.

Friday morning I awoke to the spectacular number 3234.  This is the highest ANC Allistaire has had since last December.  I noted too that her hematocrit no longer had the little “L,” by it denoting that is was low.  No, her hematocrit had reached 34.  In rounds that day I asked just how high it would go.  We were at last seeing “normal,” blood counts.  Bit by bit, I have allowed hope to creep in.  Images of Allistaire alive and healthy are beginning to take shape.

That same day, I met with Dr. Burroughs, our BMT doctor, Dr. Lux, a new BMT fellow and Dr. Pollard, our Oncologist who has been with us from the very beginning.  I had asked for the meeting because I realized that Tuesday, July 16th is coming.  It had quickly become clear to me that we are not just waiting to get bone marrow results.  Next week we could be packing to go home.  I was aware that I had no idea what level of success we needed to continue forward.

Zero percent. We need there to be no cancer detectable.  Such an unimaginably tiny number.  Such a seemingly impossible number.

If Allistaire has cancer that is detectable at Day +28, she is essentially done.  If the conditioning chemo and the radiation and this new marrow together hasn’t sufficiently destroyed the cancer, there is no weapon left.  I have had a doctor say to me, “we have many weapons in our arsenal.”  On this day, Dr. Burroughs used the word, “armamentarium.”  We have been at war with this insidious destroyer for a long time and we are at last coming to the end of our weaponry.  We may be approaching the end and despite the logics of it all, it still comes as a shock.  It is the knowledge that with my eyes I may see a vibrant, lively little girl, but the science may tell us that this view is short-lived and that the gluttonous cancer cells are on the move seeking to devour my beloved.  Haven’t I always known this?  Haven’t I known this reality so long that it seems “always.”  Surely, I knew before one step into the transplant process, that this was it.  This has been our last chance, the last thrust to take ground and come out victorious.  And yet, I am disoriented.  I don’t know how to go about the day with the view of a cheery little face ever-present before me and the awareness that we may be taking her home soon.  The past several days we have been given passes out of the hospital.  I showed Allistaire our new Ronald McDonald House apartment.  I showed her each of the rooms and the bed where she would sleep and where Sissy would sleep when she comes to visit.  I tell her of the life we may soon live out of the hospital and I pray it is here in this strange apartment and not at home.  At this point, Allistaire at home in Montana would mean we are assured of losing her.

She just seems too alive to die.  Surely she is just too loved to die.  How I desperately wish these were true.  The odds are not in her favor.  Yet, I was encouraged by Dr. Burroughs, who as a self-proclaimed realist, said that she is hopeful.  She says that Allistaire is looking amazing and that all her blood counts and tests look excellent.  Dr. Pollard added that in her view, if the bone marrow is not 0% blasts, but less than .5% (please note the “.” in “.5%”), then there may still be hope.  It might still be possible to turn down the immunosuppressants, allowing the new marrow to get a bit more ferocious, and give her the chemo, Azacitidine, which interferes with RNA and DNA in the cell, and get her into a “disease negative state.”  “All hope is not lost,” she says, but my heart just sits so heavy.

Saturday morning Allistaire’s ANC dropped from 3234 to 780, and with it my heart went plummeting down.  From shiny glory to darkness and limp.  I woke from the night with a smile and thoughts beginning to form of what the day might look like.  But with the news of this ANC, heavy, black clouds formed instantly overhead. How weary I am of having countless days and plans overturned by  sorrow.   It could be because of her rhino virus.  Yeah, yeah, yeah.  Maybe.  When Dr. Burroughs called a few hours later, she said that this could most certainly be a result of the virus.  Often, the body can hold steady as it mounts a response against a virus but within several days, the ANC can take quite a hit and stay there for a week or two.  She noted that this may especially be the case with this newly established, not yet fully rooted, immune system.  “I am not without hope,” she says multiple times.

Hope.  What is it?  It often feels like desperation for something to be true that we want to be true.  We shove all of our desires into the confined space of what we imagine for ourselves, for our lives, and we call it hope.  We hope, oh how we hope…for this or that.  I hope with all that is in me that Allistaire will make it through this.  Every sinew in my body strains forward in desire to see my sweet girl healed and alive.  I want to be done with this.  I want to be on the other side of this madness, Allistiare’s jubilant little body bobby around as we walk hand in hand.  I don’t want to live this precarious life where any moment the winds can turn and upend my life.  My hopes feel flimsy in the face of the uncertainty of life – their bulk can not withstand the force of realities outside of my control.  Control.  I really don’t have any of that.  Any control I think I have is illusion.  When things go as I hope, it appears as though my control has accomplished something.

The terrifying truth is that God is in control and He may not always act according to my “hopes.”  He chooses according to His will.  He acts according to His view of good.  But it feels like terror – can I really cry out for help to the same God that would take the life of my child?  How can I trust someone that allows the flesh of a child to be ravaged?  It comes to this: in one action God made known for eternity His perfect goodness.  Not just His righteousness, His justice, but His outlandish compassionate grace.  I fix my eyes on Christ and take in the full view of who He is.  Christ in the Garden of Gethsemane, Christ on the Cross, Christ risen, Christ ascended, Christ behind the curtain, Christ at the right hand of the throne of God the Father.  I look to this Christ.  I have confidence in the goodness of God – but again, not just His goodness, but His kindness and gentleness and compassionate heart.  This same heart that called His Son to die.  I consider the God who asked His only Son to allow His flesh to be ravaged, who asked His Son to experience separation from His Father.  Yes, Christ asked for God to take this burden from Him.  More than once, Christ asked His Father – “take it away!”  But Christ submitted to the Father’s will that looked like brutality.  Christ submitted to the Father because He had tasted of the Father’s resplendent goodness, and for the “joy,” set before Him, He endured the cross.  It is both because I see the Father through the eyes of Christ, and because of all that was accomplished as a result of Christ’s submission, that I too can endure.

If I put my hope in lab tests and bone marrow results, I can be constantly whipped around.  And I do – I do hope for good results and when things do not turn out as I so want, I feel barraged and tattered.  But I am not undone.  I am not destroyed.  My peace is not stripped from me.  I yet have hope!  My hope is rooted in Christ who tore the curtain and made a way, no, is THE way, that I can now boldly approach the throne of GRACE!  In the book of Hebrews it says that we, heirs of what has been promised, we who have fled to take hold of the hope set before us may be greatly encouraged.  We have this hope as an anchor for our souls, firm and secure.  Yes, I am constantly being battered by these winds of disease and brokenness and sorrow, but I am ultimately secure.  I call out to the same God who has the power to still the storm and who may not, because in one action, He made known for eternity, that He loves me.  He loves me!  Christ on the cross – Christ’s flesh ravaged – Christ’s experience of being forsaken – it was all to make a way for me to be bound to the God of the Universe for all of time!.  It is not only that God is good, but He bends low to carry us.  He condescended to walk on this broken wreck of a world, because He is a compassionate God.  “For God so loved the world that He sent His only Son, that whoever believes in Him, will not perish but will have eternal life.”  John 3:16

Like Christ, I am in anguish and I call out to the Father to take it away.  Don’t ask this of me Lord!  Don’t take the life of my child!  Like Christ, I bend my knee and I submit.  Like Christ I say, Father, your will be done.  And I know, that like Christ, now matter what comes, this God will redeem.  He will lift up!  He will overcome death with life!  For the joy “set before,” me I ask God to help me endure.  I pray for joy now, but ultimately my anchor is hooked into the joy set before me, joy in the temple of the Lord – in the very Holy of Holies.  This is my hope.

Today Allistaire’s ANC is 1189.  Her platelets are 99 and her hematocrit is 34.5.  There are zero blasts.

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IMG_3265What joy it is to announce a fully engrafted new immune system, blood cell producing marrow in Allistaire!  Yesterday, on Day +19, she reached the magical line of two straight days of an ANC over 500.  On Friday she had reached 352 and on Saturday her ANC jumped to 817!  Sunday it bobbed around and dropped to 540 and today it is 968!  Her platelets and hematocrit are also climbing.  Today her platelets are 98 and her hematocrit is 32.9.

Allistaire is really just doing spectacularly!  She is now taking four of her medications by mouth:  Lasix for fluid retention, Zofran for nausea, Enalapril for her heart and blood pressures and Ursodial for her liver.  This is a huge accomplishment!  Allistaire actually told me the other day that she is feeling better and is ready to leave the hospital.  I greatly encourage this desire at this point, but let her know that we can not take her IV pole with us out of the hospital so she has to start taking all of her medicine in her mouth and start eating with her mouth.  In addition to taking some meds by mouth, today marks her last day of the antibiotic, Cephapime, which she has been on since her first fever spike back on March 16th.  This is a med she gets three times a day so it will be really nice to be done with it.  She also continues to taper down on her Diladid pain drip.  Today she is at two and will likely drop down to one tomorrow.  At her highest, she was at a seven.  She does occasionally still express pain in her tummy but it is hard to discern if this is actual pain or if it is nausea.  Our new BMT doctor, Dr. Burrows, wants to scope her from both ends (down into tummy and up from the bottom) on Thursday or Friday to look for GVHD in the gut which is very common at this point.  Her skin is also looking a lot better.  The weird bronzed skin that resulted from her conditioning chemo, Busulfan, is starting to peel away.  The change is most noticeable on her hands.  Her back and arm pit are also getting better slowly.  I should point out that these areas do not hurt Allistaire, they are just mostly irritating and itchy so we are applying a few ointments to help the healing process.  Our biggest hurtles at this point are for Allistaire to increase her eating and drinking so that she can take in the necessary calories by mouth and get off of TPN and lipids.  She must continue taking more and more meds by mouth.  I think she is going in the right direction as far as fluid retention, but she is still out of balance at this point.  As far as I understand, because her liver and kidneys are doing so great, this is probably just a matter of still healing up from mucositis.

Allistaire continues to be full of joy most of the time these days!  She had a great time with my dad over the weekend and apparently remembers his cute suggestion that imagined the white linoleum on the hallway floors being shark infested waters, forcing Allistaire to walk on the “bridge,” or the brown linoleum.  She walks doggie and piggy and her now two Hello Kitty purses in her stroller.  She is singing a lot more and has even been dreamily singing about Tito – one of the male CNAs (nurses assistants).  It is just getting to be more and more fun to be around her and everyone celebrates her liveliness!  Everywhere we walk – she is walking, living, giggling victory!  Of course as Day +28, which will be on July 16th, draws near and we have our first chance to see how much of her cancer is left in her marrow, I feel trepidation.  I have no idea what the road ahead will look like if there is cancer left.  Dr. Burrows has agreed to meet with me in the next few days to discuss this.  But today as I relayed my fears to Dr. Burrows, she told me that honestly she was one of the doctors who was very unsure if this transplant was a good idea.  A doctor’s first responsibility is to do no harm and her fear was that Allistaire would be in very bad shape.  She said that she is utterly delighted to see her doing so extraordinarily well.  She said that we are pushing the edge of what is being done in transplants.  We are in new territory.  Scary and exhilarating.  I am going to enjoy this week.  I am going to soak in my sweet-faced little love.

On another note, Solveig just finished up her time at Camp Mak-A-Dream just east of Missoula, Montana.  Sounds like she had an amazing time.  She had the opportunity to ride horses, make a tie-dye shirt, go fishing, shoot guns and a bow and arrow, play tons of games and go swimming.  She had the joy of being in the same cabin with Jaxon’s older sister and a girl her own age that is the little sister of a boy we met here at the hospital who had AML and two transplants and is 10 years out from his last transplant.  What a joy and a gift for her to be able to be with other children whose lives have been and are so deeply impacted by a sibling with cancer.  Solveig took some disposable cameras with her so I’ll see about getting some of her photos posted once we get them developed.

Lastly, I went on my first bike ride in over a month.  It was mostly a great time, except the last 45 minutes when I just wanted to be done.  I rode the Burke Gilman Trail to the Sammamish River Trail to my favorite nursery, Molbaks, which is in Woodinville.  Not sure how far that is but my behind sure felt like it was quite a ways.  I’m also now a bit more prepped with a pair of gloves, riding glasses so the wind doesn’t dry out my contacts and make me swerve all over the place, a clip for my pump and a bag to put my phone, keys and such in so that I don’t have to hang my wee silver hand bag off the handlebar and feel like a raging dork.  Also folks, I’m going to put it out there again – it is almost exactly one month until I ride in Obliteride and many of you have already generously helped me reach almost $5,000 of fundraising.  I still am hoping to get all the way to $8,000.  Remember that 100% of donations go directly to funding cancer research at Fred Hutch and in case you are just picking up our story – Allistaire is not in Montana today on Hospice because Fred Hutch just recently opened a clinical trial for a bone marrow transplant without being in remission.  Transplants are traditionally only offered to patients who are in remission which means 5% or less cancer in the bone marrow.  Allistaire went into transplant with 50% disease.  She has been given a chance to fight one more time because of the research being done right this very minute at Fred Hutch.  The abstract has become oh so tangible.  Allistaire is living, walking, laughing research.  Here is the link to my Obliteride page if you are interested in supporting me:   Help Jai Obliterate Cancer!!!!

Last but the farthest thing from least, I address You – You creator of all things – You God who was not content to stay far off and lofty but looks down upon the earth and considers all of our ways – You who formed Allistaire Kieron in my womb – You who delights to bring about the seasons and who created all the vast glories around us and in us – You, the one I have the privilege and delight to call Father, Thank you.  Thank you for bringing us this far.  Thank you for every single day of life.  Thank you for every way that you sustain us and hold us up.  Thank you for your beautiful promise of Rest – rest now and rest for eternity!  To God be the glory!

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Wrestle some more


IMG_3206I awaken from a truly good night’s sleep.  I only had to get up at 2am for a few minutes and otherwise I slept great.  I find myself singing, “This is the Day that the Lord has made.”  I am happy.  I am hopeful.  Yesterday, as Allistaire and I tossed the blue and white swirled ball back and forth, I watched her silly face.  I gazed at the goofy faces she was making.  “She is finally coming back to herself,” I thought.  Here is Allistaire, the real Allistaire being unmasked.  I felt such tremendous hope in that moment that this will all turn out as we so long.  I’ve been allowing myself to imagine bringing her home to live.  I’ve been allowing myself to imagine life, normal life, with her in it.  I still say with my words, because I know it in my mind, that maybe we will only have a year with her.  But maybe, we can just make it past that magical year mark where the risk of relapse goes way down.  I know the road ahead may still be very hard, filled with all sorts of challenges as a result of her treatment, but I hope there will be a road ahead with her.

As I smile and ready myself to leave the room to shower and start the day, I remind myself that this may not be what God has for me.  We are still not out of the woods and the thought of a Make-A-Wish trip to Disney World flits through my mind.  All sorts of little logistical questions speed past – will it be too hot?  She will need blood – will she need special blood now that she has had a transplant?  She will be immunosuppressed so she could easily get sick and what would that mean?  Will she even be able to walk?  This is the day The Lord has made, I remind myself.  No matter what the day holds.  This is a day of His making.  Just yesterday I formed these words in my mind, “I have a good life.”  They startled me but then I affirmed them.  Yes, I do have a good life.  God has been pleased to shake up my life.  He has not made it ordinary.  All sorts of wonderful things are coming out of these days.  I consider what He has shown me and I treasure them.  I know I have been given great gift.  As I left her room, her CD played and she was snuggled in bed for her nap, I thought about how many times I have heard those notes.  Those rises and falls and moving of sound and in how many different realities and days of dark and light these notes have been the backdrop.  The notes are beautiful and they make me sad and they also cause me to smile feeling it is lovely to be at a point in the journey of such bright shining hope for the future.  We might just make it through.  You never know.

With the ritual of the early morning, I extend my hand to the night nurse for the paper.  She hands me the labs and I scan.  I see the ANC up from yesterday.  But the blasts are not listed.  There is no line for Absolute Blast Count nor a line for Blasts %.  For the briefest of moments I hope that is because they are considered irrelevant.  I look into her eyes and ask why they are not listed.  The lab called.  They need the pathologist to look at them to see if they are blasts.  No, I know they are blasts. The big question is, what kind of blasts are they.  And I know only Flow Cytometry can answer that question.  Heat creeps up the back of my neck and by the time I walk off the Unit toward the showers, the nervous tension has spread through my lower back where it just sits, heavy.

Three times she has had blasts in her blood.  Each round of chemo was declared, “failure”, with the rising wretched presence of blasts.  It has never, ever been the normal kind of blasts.  It has never been good.  Blasts have always been the markers of failure.  And this time I know there is no next option.  Failure of this last great attempt with transplant means utter failure.  It would signal the end.  It would be time to close up shop and how you do that, I don’t know.

My face contorts but I only cry little.  I don’t want to look hideous today.  I don’t want to ruin my eye shadow.  How vain and how pathetic – yes and no.  I am not ready to fall to pieces.  There is a sliver of hope that this time they could be normal.  This time there is a second marrow, not only a diseased one.  It could be that the new donor marrow is just working like crazy to put out blood cells and that can result in a few blasts, which are simply immature cells.  But I know I must consider the immense possibility that this is not the nature of these blasts.

I just keep thinking of that silly face she made yesterday.  I can see the way she tilts her head to the side, with closed mouth and dropped chin, her eyes lifted upward to the ceiling.  Then knowing she was funny, she laughs.  She scrunches up her shoulders and her eyes are slits as her cheeks are shoved up by that great toothy smile.  I just don’t know how to live without her.  I just don’t WANT to live without her.  I want her in my life.  I don’t want a life with her gone.  Already my mind is going to questions of how long will it take for her to die and will we be at home or in the hospital, and oh, I just don’t think I can endure months at home watching her slowly be taken.  And I wonder, why God?  Why didn’t you just take her before, when all looked lost?  Why would you give us this beautiful hope of transplant, just to dash our skulls against the rocks again?

But then I stop.  I don’t even have to look down at my wrist at the new tattoo meant to be a reminder.  I already know.  “Lift your eyes.”  That is how you will live through this – come what may.  Whatever the results of the pathology test, whatever the days ahead – they don’t dwell in isolation.  They exist in the midst of an expansive, surrounding reality.  Imagining months at home of perpetually preparing for her death, it seems like nothing but pure, ravaging torture.  Again the question of “why?”  Why would God allow this tedious torture to go on and on?  If He is just going to bring her life to an end, why didn’t He just take her already?  Every cell of my flesh is absolutely wild with desperation to get out from under the suffocating weight of this reality.  I fear my breath being crushed out of me, my ribcage collapsing under the immensity of the darkness over head.

Ultimately I see that this is a question of what, really, is the purpose of these lives we live.  I grieve at the thought of never knowing Allistaire as an adult.  I see all of her beautiful, unique personality qualities and I want to see them unfurled – I want to see them full and mature.  But what if this is the purpose of her life.  What if these short three plus years are exactly what God made her for?  What if she is full to bursting with living out days God has planned for her?  What if He allows this to go on far longer than I think I can bear, because He still has things He wants to show me – to show all of us who are witness to these days?  What if growing up, going to school and having friends and having a career and a family and all of that wonderful stuff I have hoped for myself, is not the ultimate fulfillment of life?  What if those are just side details?  What if the core of existence is to see the living God face to face and to come to truly know Him?  Well, it this is the case, than all these other hopes and things we strive for are essentially irrelevant or at least extraneous to what should be the core thrust of our life.  I find myself constantly wanting to “get my life back.”  I just sometimes feel crazy desperate to have a normal life.  But then I hear the Lord saying to me – THIS, right here Jai, THIS is your life.  And I rage and I beat my fists against His chest because it hurts so bad.  And I ask how can you do this to me?  How can you be so cruel?  How can you deny me the life you gave me?  How can you take her back?  And He stands firm until my fury is spent, until there are breaks in the sobs.  And I don’t know how He tells me this, but I hear Him remind me that this life is the life of the seed.  The life of the tree is the life to come.  The seed must fall and die, so that the tree can grow up in its place.  This life looks nothing like the life to come, but it is absolutely tied to the life to come.  You can not tell by looking at the seed what will come of it.  Had you never seen a tree, you could never, ever imagine a tree by simply considering the seed.

So I have ruined my eye shadow and my large nose is no doubt now much larger from the tears and the raging explosion of the sinuses in response to grief.  I don’t know what I will know tonight or tomorrow.  I have had to wait now so many times.  So many times I have had to live through minutes and hours and days wondering what God has in store for my life.  Countless times I have had to wait for a phone call or the face of a doctor to appear.  Countless times I have had to ride up and down along the wave of hope and sorrow.  I know just a little bit more than I used to, how to do this.  I know the ravaging sensation of having a wave sweep you off your feet and hurl you into darkness, of the wild grasping to figure out which way is up.  I know the pleading, desperate prayers for God to please help me, please hold me up, please give my eyes to see, please give me ears to hear.  And I know to expect that He will not answer as swiftly as I like and His comfort will not come like a bolt of lightning.  He will probably not respond with some other-worldly vision – some tangible proof that He is real and that He is good.  But His Word that He has planted in me will rise up.  The truths He proclaims will spread and fill and lighten the load and pull back the darkness.

I don’t know the true nature of these blasts.  If they are not leukemic I wonder at why God even lets them be present – why torture me?  But then I know I am so small, I am so finite.  I have sought to yield to The Lord, but it is something I must come back to again and again and again.  Such hours as these are gift from His hand, because I am forced to again consider what this life is about.  I have allowed myself to imagine bringing Allistaire home to live, but what would that mean, what would that look like?  Will I just fall back into that rut of the expected, common human life.  Will I just expend my energies again for the things that seem ultimate in this world?  Will I set again the bar of “good,” in accordance to the norm?  Have I really yielded or do I really just want my normal life back?  I wrestle and wrestle with this God who calls me to lift my eyes – to see life as He proclaims it to be.  Here is what it comes down to.  On one hand it seems ludicrous, absurd to put all my hope, all my stock in this invisible God who I have never, ever heard speak to me the way Allistaire does.  On one hand, I seem out of my mind and all anyone can offer me are more of those limp, powerless, “good thoughts.”  But.  I have tasted of The Lord.  I have heard His voice.  I have seen Him.  You cannot possibly believe me until you too have tasted of His glory.  And then you will know.  And then you will find that remarkably, you can smile even as tears stream down your face, because you know that He is up to something.  No you cannot see it fully.  You do not understand it.  But you have grasped onto and are being held onto by the Living God of the Universe – He who spoke it all into being.  And you yield and you say yes and your heart breaks and you look for light on the horizon because you know it is coming.

The above was my life from 6am to 11am yesterday.  In rounds, Dr. Andrews said he was not concerned about the blasts.  He said that sometimes the marrow is just working so hard to make cells that it is pumping out really immature cells of all kinds.  When the blasts appeared there were also promyelocytes, myelocytes, metamyelocytes, and bands.  These are all different types of immature white blood cells and while they are usually only found in the bone marrow, when the new marrow is working so hard, they may appear in the peripheral blood as well.  He said he would go talk with the pathologist and get back to me as soon as possible.  When he returned, he relayed the news that the pathologist says the cell looks normal under the microscope and it is only one blast cell, despite the CBC showing a blast count of nine.  Only Flow Cytometry can ultimately tell whether or not the cell is leukemic, but because of all of the other indications that all is well, no further testing was deemed necessary.

Today there are zero blasts and I pray to never see them again.  Every day receiving the labs will be challenging.  But, in contrast to the fear of the worst, is the ever amazing improvement of Allistaire.  Her ANC was 300 this morning, platelets 78 (up from 34 several days ago) and her hematocrit is 32.7 (up from 30.9).  Her mucositis seems to have disappeared along with all the goopy towels, throw up bowls and strings of slime.  She opens her mouth wide for teeth brushing and has even eaten a little including peach yogurt at the moment.  She has taken her one by mouth med, Ursodial, twice and pooped once (first time in a week).  She continues to ride her bike and walk laps around the Unit and has painted twice.  There has been lots of playing ball and an entire 30 plus minutes of joyful engagement with Annie, the music therapist, who has not been welcomed in by Allistaire since her birthday in March. We are two days into tapering down her Diladid drip.   Her blood pressures are improving.  She is coming back to herself.  It is the absolute best!  Even the yucky skin in Allistaire’s arm pit and back where she had focal radiation is getting better.  The weird bronze of her hands and around her neck is beginning to peel and go away.  She is healing up.

I end this Fourth of July with the luxury of having my greatest immediate sorrow be the fact that I am eating the same Starbucks salad for the fourth day in a row.  I fantasize about potato salad and every sort of tasty grilled thing I can imagine.  I think of all the last many years spent in Bozeman on July 4th and the tasty baked treats my sister-in-laws would have brought up to the house.  I think of Jensy out in the grass, creating the fireworks show for us.  Maybe next year. IMG_3131 IMG_3135 IMG_3142 IMG_3151 IMG_3159 IMG_3164IMG_3169 IMG_3173 IMG_3175 IMG_3181 IMG_3184 IMG_3186IMG_3189 IMG_3191 IMG_3192 IMG_3197 IMG_3198 IMG_3200 IMG_3202IMG_3209 IMG_3214 IMG_3217 IMG_3219



IMG_3123My butt sat on the hard bleacher, the room hot with boredom and hundreds of bodies on an early summer day in California.  My head rested in my hand, elbow on knee, anticipating the end of this forever assembly of the student body.  Blah, blah, blah, award after award.  Today we’d like to honor so and so…who has been a professor here with us since 1993.  Lazily, I comment that was when I graduated from high school.  Sten sits beside me and responds that was the year he graduated from 6th grade.  My head jolts up and not long later nauseousness sets in.  What?  Oh my gosh!  Am I actually thinking of dating this guy who was a 6th grader when I was a senior in high school?  That’s crazy talk.

When Sten and I were first together, those 5 1/2 years seemed like a pretty big gap.  I, at least, struggled for a number of years with the age difference.  People would say, “well, he must be really mature for his age.”  “Yeah,” I thought, “or I am remarkably immature and no one bothered to tell me.”  We’ve been married 12 years now, and while the reality of our age difference does still come up from time to time (Sten still has no gray hairs and I have a multitude) – as time goes on, the impact of those 5 1/2 years diminish.  There will for all of time, remain 5 1/2 years between the birth of myself and the birth of Sten.  No future event or mass of future events, will ever, ever change that reality.  Never the less, as time marches on, the relative time of those years gets shorter and shorter – their significance, smaller and smaller.

This is in away, similar to what God promises.  He says that the trials and suffering of these days, will one day feel relatively light and momentary as they sit alongside the amassed glories of God’s fulfilled promises.  No matter how much time passes, or what good might come out of these days, their sorrow and the “wrongness” of disease and death, will always remain real and true.  Sickness will always be a brokenness that is not as it should be.  Death is always an end we know in our gut should not be.  We were not created for sickness and death.  They exist because sin exists – BUT – one day they will no longer exist.  They will be done away with forever.  There will be no more sickness or dying or tears.  And all of our weighty sorrows and suffering will diminish in their relative girth as they sit alongside all of the life and wonder and beauty that God has already begun and will continue on into eternity.

Such claims sometimes seem like a cop-out – like some handy explanation to make anything okay.  They seem like they let God off the hook.  But what if it is true?  What if what He says in His Word IS true?  Then it is not some flimsy explanation but glorious, wild hope and joy!!!  The thing is, we are not there yet – God’s outrageous promises are not all fulfilled.  How in the world can we put our hope, as we feel our lives battered relentlessly by storms, in some future hope that it will not only eventually be okay, but wondrous?  You want me to bank on some invisible God I’ve never heard speak to me with my ears?  You want me to look at this broken mess in front of me and call it momentary and light.  How audacious!  How offensive!  Unless of course it is true.  But how can I know?

So I used to just really hate hymns.  Mostly I’m a horrible singer.  I have absolutely no skill at singing and asking me to sing a hymn is like saying I should get up this morning and climb Mt. Rainier.  Not going to happen.  I’m still awful at singing, but I have actually learned to love hymns.  Perhaps it is because of Augustus Montague Toplady – a ridiculous name really, and one I could not help snicker at every time we would sing “Rock of Ages.”  His catching name caused me to start looking at the names of those who wrote each of the hymns we sang.  Over time it came to me that I was singing the same words that some one hundreds of years ago, in a radically different time and potentially radically different place, wrote.  We both, Augustus and I, were saying the same things about God.  He wrote those words 240 years ago in England and we can both attest to the same experiences with this God!  The more I looked for the names, the more excited I got when I saw that they were writing about their experiences with God and they matched my experiences with God.  Surely the testimony of many witnesses who don’t know each other, who have lived in different times and different places with totally different life experiences, must lend great weight and credibility to their claims!

This morning I finished reading the claims of another sister in Christ.  Claims about God being good in the midst of deep darkness.  We are voices proclaiming the glories of a beautiful, good God who meets us right here, right now.  The present fulfillment of His promises is why I put my hope, stake my claim, on the fulfillment of His future promises.  I lift my eyes and look for Him!

Here are her words bearing witness:  Charlies Song: Proof of God’s Goodness

Here are Augustus’ words bearing witness:

Rock of Ages, cleft for me,
Let me hide myself in Thee;
Let the water and the blood,
From Thy riven side which flowed,
Be of sin the double cure,
Save me from it’s guilt and power

Not the labor of my hands
Can fulfill Thy law’s demands;
Could my zeal no respite know,
Could my tears forever flow,
All for sin could not atone;
Thou must save, and Thou alone.

Nothing in my hand I bring,
Simply to Thy cross I cling;
Naked, come to Thee for dress;
Helpless, look to Thee for grace;
Foul, I to the fountain fly;
Wash me, Savior, or I die.

While I draw this fleeting breath,
When my eyes shall close in death,
When I soar to worlds unknown,
See Thee on Thy judgement throne,
Rock of Ages, cleft for me,
Let me hide myself in Thee.

On a happy side note – Allistaire’s ANC today is 175!!!!  Yesterday she got out and rode her bike around the Unit three times and did about 30 laps around our little 300-wing of the Unit.  Her mucus is starting to look a little more like normal saliva.  Go neutrophils GO!IMG_3115 IMG_3117 IMG_3124 IMG_3126 IMG_3127