Sorry for leaving you hanging…we just found out around 5pm yesterday…

I was at Goodwill last weekend trying to use my 50% off one item coupon.  As I walked down one of the aisles I heard a bang, bang, bang sound – the sound of metal crashing against metal.  When I turned around I saw a little boy with a toy on the floor.  It was some sort of metal tool box with little compartments and little metal drawers.  He lifted up one of the metal drawers and crashed it down, trying to force it into the space over and over again to no avail.  Yet on he tried, bang, bang, bang.  Perhaps the drawer used to fit but it was clear it no longer did.  None of the pieces would fit into the hole.  Did he think that he could make it fit if he exerted enough force?

I find that I keep trying to fit the new life God is calling me to, into the same old space that I have constructed for what my life should look like.  There are clear-cut little compartments for each component of my life and try as I might, I keep meeting with frustration, because this new life just doesn’t seem to fit my categories for what I want my life to look like.  It is beginning to dawn on me that this new life simply does not fit into the space allotted for my old life.  The question is, which do I abandon?  The two will not fit with one another no matter how hard I try and the trying is so exhausting and frustrating and maddening.  It is beginning to dawn on me that I might have to let one of these lives go.  The thing is I want both of them.  I want them to work together.  It comes down to this: I want the life that I imagine for myself to be the life God imagine’s for me.  I want God to give me what I want.  Wow, when I put it like this I really do sound 2 years old.  But really, this is the truth.  I want this perfect life I conjure up in my mind – I want it all – I want health for everyone I love, I want financial security, I want a beautiful happy home in a beautiful happy place, I want freedom and ample time for fun activities and adventures, I want satisfying work, I want to be beautiful, I want to be loved and well liked.  And the other truth is that I have parameters for all these little categories that define if my life has matched up to my desires.  I say no to this and yes to that in order to progress toward what I want.  The Lord has given me an image for this sort of life.  It is a grasping of the fist sort of life.  It is a life in which I grab with all my force to get what I want and when I have something I want, I hold onto it with all my might.  It is a narrow life, that says this small space of possibilities is the only thing that will make me happy, the only thing that will be satisfactory in my life.  Anything that does not fit into my vision is unacceptable and rejected.

God is tugging at me.  Tugging and tugging.  He’s wooing me away to come walk with Him.  He’s extending His arm and offering me His hand.  He’s asking me to consider that perhaps, there is, not just in words, but in absolute reality, in absolute truth, only one thing to chase after.  It is He.  He is asking me if I will release my grip; if I will allow the muscles in my fist to relax; if I will allow my palm to open.  “What if you lived an open handed life?” He is asking me.  Friends, I am not just saying this, I am not just coming up with some lovely words to describe a lovely life.  I really hear in the core of my heart God asking me this question.  He keeps asking me, Jai, will you live a life where your palms are open and ready to receive whatever it is I have for you and ready to give whatever I ask of you?  Can I tell you how terrifying this is?  I want to turn around and run.  It is too scary what you’re asking of me I cry back.  I don’t know how to do that, I stomp with my foot.  I suddenly think of Lot’s wife.  God told her not to turn around and look back on the wretched place that He was about to destroy.  He had spared her life and offered to lead her away to a better life, but she turned around.  She looked back because she longed for that wretched place.  But even in it’s wretchedness, it was known to her.  To turn away from the known and walk out into the wide open space where anything, literally anything, can happen – it is a frightening proposition.  It comes down to this – do I actually believe God is in control and that God is good and loves me and will provide for me?  Can I really, really entrust my future to this God?  Why do I struggle to wait?  Why is it agony waiting to find out if we get to go home yet or if Allistaire’s bone marrow test comes back good, or if she will relapse one day or if she will eventually have to have a bone marrow transplant or if this or if that?  Waiting is not static – it absolutely replete with activity.  My waiting is characterized primarily by worrying, running different scenarios over and over in my mind, trying to problem solve the many different possible outcomes.  What I am trying to do is to figure out how I can exert my wee bit of force to push things in to turning out the way I want them to turn out.  I set my hope on this one thing and all my energies go to trying to make this one thing happen.  And this might be okay to some degree except that I only allow in my heart for one version of reality to be okay.  Nothing else will do.  I want Allistaire to be healthy and I want it now and I never want to go through anything like this again.  It’s not that this is an unreasonable desire, but what would it be like if I held my hands open.  What if my outstretched palms were in submittion to whatever the Lord has planned for me.  What if I held Allistaire’s life with open hands – thankful to have received her and willing and ready to entrust her to the Lord.  This is a very different posture than a grasping fervor with every muscle in my body clenched from exertion.  Can I entrust Allistaire to God?  Is He trustworthy?  What about my finances?  What about my own flesh?  What about my relationships?  Can I say to God – Father, all of these are yours and they are in your hands.  I don’t need to grasp and clutch like a starving child, you will feed me, you will provide for me.  What if I were to wait with open hands?  This is all so utterly foreign to me.  I really don’t know how to do this.  All I’ve ever known is to work hard, to do, to do, to do, to exert, to exert, to exert.  The laughable question, is really, what as all of this ever accomplished?  The truth is the very best things in my life have been simply given to me – they have been things almost entirely beyond my control.  I think of the gift of my parents, my brother, my husband, my two girls, all my lovely in-laws, my home, my health, my faith.  It has all been given to me.

An open handed life is an expectant life.  It is a life in which you expect to receive and you look for it.  But it is a receiving, not a grabbing.  It is a life in which everything is a gift.  It is a wide-open, expansive life that acknowledges, accepts, yearns for the breadth of what God may do.  But let’s be real, when you open wide the realm of possibilities, it feels as though you have invited in all matter of wretched possibilities, of horrors and griefs you think you cannot possibly bear.  I was recently remembering how many hours I spent in the ski lodge up at Bridger Bowl in Bozeman the winter I was pregnant with Allistaire.  I was embroidering a crib skirt for her room while the rest of the fam were skiing.  If someone were to whisper over my shoulder that the child for which this was being lovingly created would one day, not so far away, fall ill with cancer, I don’t know how I could bear the weight of it.  The thing is, we find ourselves quite able to imagine the worst because we hear all about the frightening options all around us.  Just yesterday, a neighbor who has not seen us in months told me about his cousin’s child, who was 2 years old, choked on a peanut this summer and died within minutes.  The awful possibilities go on and on without end.  What we are far, far less able to imagine is the way in which in the very midst of the woe, we may see the very face of God.  As we sense ourselves falling down into the blackness of our fear of our situation, we may just sense the strong grasp of God’s hand as it wraps around our wrist and draws us back up into the light.  I can say in truth, that I have known peace that passes understanding; peace that doesn’t make sense, that is unreasonable, that seems outlandish and at times absurd.  I have known peace that surpasses the quantity and quality that I had yet known and that does not seem to fit with the “facts” of my situation. I have had plenty of reason to fear.  Fear has been reasonable.  I am not just talking of things with Allistaire, though this is of course the most recent and the most immense.  God has met me in these places.  But the truth is, as I sit here at 2:30 on a rainy afternoon at my kitchen table, awaiting the call of all seeming calls, waiting for the results of Allistaire’s bone marrow test, I see the awful possibilities and I find myself going down the road of fear again.  My relentless Father keeps tugging, keeps drawing me back, keeps exhorting me to trust Him, to dare to live an open-handed life.  I don’t know what I will know in a few hours, or perhaps as late as Monday.  But part of this call to an open-handed life is also to be here now.  Right here in this very place and know that right now is my life.  I cannot wait to live my life until much-hoped for good news arrives.  I am being called to be present to this moment and rejoice in what has already been given to me.

There is a passage in scripture that has long caused terrified delight in my heart, a giddy glee that such a thing is possible and an absolute desire to clamp my hands over my ears, all at the same time.  Isaiah 43 says this:  “But now, this is what the Lord says – He who created you Jacob, He who formed you Israel: Do not fear for I have redeemed you, I have summoned you by name; you are mine.  When you pass through the waters I will be with you; and when you pass through the rivers, they will not sweep over you; when you walk through the fire, you will not be burned; the flames will not set you ablaze.  For I am the Lord your God, the holy one of Israel your Savior.”  Such provision is hard for me to comprehend and yet the thought of it makes me literally full of joy.  At the same time I see that I am not promised that I will not have to walk through swirling water or blazing fire.  I’d much prefer no threatening river and no burning fire.  I’d like to just go around that  – okay God.  That would be better right?  Why don’t we just go this other way instead and avoid the whole fire and flood thing.  God does not promise me an easy life.  He promises me He will be with me and He will provide for me.  Why?  Because He has pursued me – He created me, He wants to be with me, He knows me personally, He has gone to great costs to redeem me – to lift me up out of the ultimate pit.  How can I actually know He is trustworthy unless I experience times where I find I need to trust in Him and He can show Himself able?  I want the phone to ring right now and I want to be done waiting and I want to hear that they found 0% cancer once again.  This is my wish.  But I cling to the promise that He will be with me, come whatever fire or flood.

This morning Solveig and Allistaire and I went to the hospital.  We started with Allistaire getting her blood drawn and then we had about an hour before her doctor’s appointment.  We went over to the SCCA Unit – our home base – and had fun introducing Solveig to lots of folks who have heard that she exists but had never met her before today.  We then headed back to the appointment with the nurse practitioner.  This was a relatively uneventful meeting where Allistaire’s CBC (Complete Blood Count) was reviewed and she was given a quick exam.  She sounded great and looked great.  The only bummer is that her phosphorus was a bit higher than the other day.  We had been sent home on Monday with a prescription for a medication which binds with phosphorus and thus enables it to be flushed out of the body.  This makes things easier on the kidneys who have, according to the oncology pharmacist, gotten “stupid” as a result of the chemo.  Basically, they need time to heal.  Despite having been given the medication to help with this, we had thus far been unsuccessful in getting Allistaire to take it because it required that we pulverize a pill and mix it with food.  The result was a rejection of the food and therefore, non-consumption on the medication.  We were sent home this time with cherry syrup that we can mix with the pulverized pill and give to Allistaire in a syringe.  This worked great tonight.  Also, I was surprised to discover that Allistaire’s ANC has actually gone down a bit and is currently 380 (down from 414 on Monday.)  I totally assumed we’d see a big boost up, but neither the nurse practitioner nor Dr. Pollard who I spoke with later were concerned at all.  They said that this was a natural fluctuation.  In addition, her platelets and red blood cell counts continue to rise which is a good indicator that things are going as they should be.  We will go in for clinic on Monday and have her blood checked again.  Because they do not have any beds available for an admit this Tuesday, we are looking at going in on Thursday, a week from today, unless a room should open up early.  Allistaire’s ANC has to be 750 before we can begin chemo.

The actual bone marrow draw went just fine as well.  There were no declarations of an incredible sample but when I asked how it went the nurse practitioner said that it was great and easy and no indication of fibrosis as she drew the sample.  Allistaire didn’t want to wake up at the end and was, as expected, quite angsty for a while.  By the time we got home, rather than wanting to sleep, she asked to ride bikes as soon as we got out of the car.  Instead she had fun playing with Sissy inside and essentially had no nap today and just went to bed a bit earlier tonight.

Now we await the results.  My understanding is that we will likely know something by tomorrow some time and probably complete results by this coming Monday.  We value you your prayers so much on our behalf!

I’ll have to make this quick…we’re heading out to the hospital in about 20 minutes for Allistaire’s lab draw, doctor’s appointment and her bone marrow draw at 1:30pm.  Please be praying for another great sample!  We pray the nurse practitioner will be able to get into Allistaire’s bone marrow and draw a great sample that will give us an accurate picture of how Allistaire has responded to her chemo treatment so far.  We may have preliminary results by tomorrow, but at the latest probably Monday.  Please pray that the Lord would be at work in our hearts whatever the outcome may be.

Below is the video of Allistaire and I leaving the hospital.  It’s by far not the best video taken as I was solo in escorting Allistaire out – let’s just say that trying to video tape and coax an almost 2 year old and push a stroller all at the same time proved challenging.

We’re home!!!!  Of course I should have written this on Monday afternoon.  Instead it is about 2am on Wednesday and I’m just finishing up giving Allistaire her 1am dose of IV antibiotics which runs over 30 minutes.  I’m headed back to bed but just wanted to let you know that the nurse woke me at 5:24am on Monday morning to say that Allistaire’s ANC was 414.  I got up immediately, called JoMarie and told her to get driving as soon as possible.  She and Solveig arrived about 7pm yesterday evening.  It was a joy to be reunited and I hope to post a video of the extravaganza in the next day or so.  So much to say but way too tired to say anything more now.

We are in the midst of the ANC waiting game.  Allistaire’s ANC only stayed at zero a few days this time and made a big jump up to 150 this past Wednesday.  From 150 we went down to 12, then zero again and on Saturday it was up to 117.  Today we hit 180.  While this is so close to 200, it can still bounce around which means we can’t necessarily expect it to get up over 200 by tomorrow, but boy would that be wonderful.  The plan is for the nurse to come wake me up in the morning if it is over 200 so that I can call JoMarie right away and let her know to get driving.  She and Solveig are all packed and ready to head back to Seattle from Montana.  They just await for the green light.  We are so excited to have us all together again!  I really didn’t want to pack 5 days worth of clothes this time but forced myself to do so.  I already started packing Allistaire’s room.

Allistaire’s bone marrow test is scheduled for this Thursday, 2/23, at 1:30pm.  I’m guessing we may have preliminary results by this Friday afternoon but I’m not certain about this.  My guess is that we would then get final results by next Monday or Tuesday.  This whole process of waiting continues to be so hard.  We’re constantly waiting for the next step in the process, each step that will get us closer to knowing how Allistaire is doing.  In my humanness, I get angsty waiting and I get exhausted waiting because, mysteriously, I exert tremendous energy waiting.  The Lord is at work in this area of my life and I am attempting to sort in out in my mind and heart and begin to put words to it.  For now I leave you a video of Piper and Allistaire playing this past week and pictures of Sten and Solveig in Montana from his visit a week ago.

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This is the letter I wrote to my nephew Elijah on November 7, 2011:

Dear Wee Elijah – I have only seen your sweet little face once.  This is because I am sick and we need to help keep you well.  I was just at the kitchen table finishing up lunch and reading Henri Nouwen’s book, “Adam.”  It is a true story of how Henri lived and worked in a home with disabled people, and specifically a man named Adam.  Adam was severely handicapped and needed help with nearly everything in his life.  Henri’s book is about how Adam’s complete lacking demonstrated in an amazingly clear way the simple truth that he is beloved of God because he is, not because of anything he has or can accomplish.  I’m at the part in the book where Henri talks about an emotional crisis he experienced.  I just finished reading this paragraph, “As I lived through this emotional ordeal I realized I was becoming like Adam.  He had nothing to be proud of.  Neither had I.  He was completely empty.  So was I.  He needed full-time attention.  So did I.  I found myself resisting this ‘becoming like Adam.’ I did not want to be dependent and weak.  I did not want to be so needy.  Somewhere though I recognized that Adam’s way, the way of radical vulnerability, was also the way of Jesus.” 

            This past year the Lord has been showing me in many ways the illusion of security and permanence and control.  I have discovered, because I have been shown, that at my most core level I am desperate for security, for the pleasure routine provides in appearing to be permanence.  In the core of myself there is an incessant wild grab for control.  Because ultimately, there is the question of what happens if…?  There were two things that happened in the world this year that showed me that what seems to be permanent is absolutely not.  The first was the wild fire of revolution that has been happening in the middle east culminating most recently in the actual death of Gaddafi in Libya after forty years in power.  All sorts of seemingly permanent social and political situations have been absolutely toppled. Then in March a massive earthquake caused the island of Japan to move 13 feet.  It still astounds me to imagine.  Who could believe the actual ground of the earth could move so dramatically.  This spring also brought about the final symptoms in an auto immune disease I have that results in hair loss.  I have been shown that I took pride in my health prior to this because I was diluted to believe my health was actually in my control – that I had actually accomplished something on my own.  I cannot even control the very hairs on my head.  In the midst of all of this I was spiritually thrashing about against the Lord, crying out that I was absolutely beyond weariness with needing Him to fix me.  There was an area of sin in my life I could not only not seem to overcome but could not even make progress on.  I read these words from Isaiah:

 “Even to your old age and gray hairs
I am he, I am he who will sustain you.
I have made you and I will carry you;
I will sustain you and I will rescue you”

                                    Isaiah 46:4

Instead of rejoicing in these words, I raged against the Lord, declaring that I was utterly done with needing to be fixed.  I was out of my mind weary of being needy and dependent.  I wanted to stand strong on my own two feet.  In all of my energies and crying out to the Lord against my sin and asking for His help, I realized in a moment, that I had been wanting Him to fix me.  To make me well.  I didn’t want God, I wanted how He could fix me.  I wanted Him for what He could give me.  What I wanted was a good thing, but not the ultimate thing, because it wasn’t God Himself.  I saw then that I was no different essentially from any other idol worshipper as described in Isaiah.

            {Here I’m editing out a bit of the personal from the original letter but retaining the effect that it had}…it felt as if my carefully constructed life was taken up like a box and dumped upside down – all the pieces falling and breaking and scattering apart.  I feel shaken, I feel undone.  I listen to the news and hear of possible world financial crisis and it seems as if every single place I turn to hold onto is itself also shaking and rocking. 

            Now why in the world would I want you, little one, of all people to hear these things?  You whose life is as fresh and new as can be?  Because it occurred to me as I read that paragraph from Henri’s book about Adam’s “handicap” and Henri’s “lack”, that this disease of yours is a very special gift from the Lord to you.  The ragged ugly bald spot on the top of my head is a gift from the Lord to me.  Among all these other happenings this year, they are reminders in our flesh, our flesh which is the very closest thing to us, that we are not in control.  We never have been, permanence and control are merely illusions, they are not real.  You were not in control when two cells came together and contributed genetic information to form all the wonders of who you are from your beautiful perfect brown swirl of hair on the back of your head to the minute part of you that doesn’t produce a particular enzyme quite right.  I was not in control all the 30 plus years that my immune system appeared to be working perfectly until it didn’t and attacked its own flesh.  When you realize that you are not in control, you may find yourself thrashing about as though you feel you are drowning in a stormy sea, trying to keep your head above water and reaching out for something to hold onto.  Here is the beautiful truth:  there is only one thing permanent, only one thing secure, and only one thing in control – it is the Lord our God, Ancient of Days.  The beauty is that God has always been in control and always will be – there is no lapse in His perfect love and power.  We do not need to be in control because God is and we are invited to rest in Him.

            We humans despise neediness and brokenness.  We put forth every effort to run from it and show ourselves able.  I suppose it is because we sense in the deepest part of ourselves that things are not as they should be.  Brokenness feels wretched because it is.  Brokenness brings pain and inherent loss.  It is real and it hurts.  The world became broken when sin entered in – it is true.  But now, this very brokenness that is the consequence for our sin has become the means of our salvation.  It is our brokenness, our inabilities that show us our need for God.  He binds up our wounds by binding us to Himself.  The ultimate brokenness in the garden was broken fellowship with God.  This is still our truest brokenness and God is pleased to bless us by providing brokenness that we can see, feel and touch to drive us to Himself where we can receive ultimate healing.  I know my words are utterly insufficient, but I reach for them to put some form to this mystery the Lord is slowly revealing to me.

            Elijah Daniel, the brokenness in your body, that will always be with you, is a gift from the Lord to point you sooner than most to your great need for the One True God who loves you dearly and wants unbroken fellowship with you.  There is a savior who was broken for you, that you might be made whole by being found in Him.

 “The Lord you God is with you,

            He is mighty to save.

He will take great delight in you,

            He will quiet you with His love,

            He will rejoice over you with singing.”

Zephaniah 3:17

 Blessings on your head little Elijah,

Aunt Jai

 Here’s one more related thought, while we often fear lack of permanence and security because of the ways we believe it will bring loss, the other side of that is that when we live in a world where permanence is not certain, we dwell in a world that also has potential for new and potential for gain.  This means that “impossible” is an invalidated word – it has no use in our world because it is not real, it is not true.  What seems immoveable is actually moveable.  What seems impossible is actually possible, not because statistics say so but because there is a God who is Able!  Today in my life there a lot of “impossibles.”  I seem to be surrounded by looming walls I can’t see over, much less imagine how they could be overcome.  So here I find myself, surrounded.  This beautiful Psalm comes to mind:

 Psalm 121

¹ I lift up my eyes to the mountains—
where does my help come from?
² My help comes from the LORD,
the Maker of heaven and earth.

³ He will not let your foot slip—
he who watches over you will not slumber;
⁴ indeed, he who watches over Israel
will neither slumber nor sleep.

⁵ The LORD watches over you—
the LORD is your shade at your right hand;
⁶ the sun will not harm you by day,
nor the moon by night.

⁷ The LORD will keep you from all harm—
he will watch over your life;
⁸ the LORD will watch over your coming and going
both now and forevermore.

I always assumed one looked up to the mountains to be reminded of who God is and how great and mighty He is.  I heard it explained however, that for those in Israel, the mountains were the places where robbers hid to come down and do travelers harm.  They were looking up and around them in fear and asking the most important question, “where does my help come from?”  So I stand here surrounded with no seeming way out.  But just as my three favorite guys in the Bible found themselves when they were thrown into a furnace, here I am with the very Lord of heaven and earth beside me.  What wonder!  What incomprehensibly glorious truth!!!  This calls to mind this statement from Psalms 16, “The boundary lines have fallen for me in pleasant places; surely I have a delightful inheritance.”  We hate to be confined, to be constrained.  Our brokenness highlights our weakness.  We buck against it with all our might.  We want to be able to do what we want without limitation.  And yet, as I found myself in this enwalled place in my life, I am finding delight and joy and peace.  My boundary lines are feeling more and more like a gift because they are constraining me to the Lord.  Instead of spending all my energies in trying to break down the walls, I am asking the Lord to help me know more and more what it is to rest in this place – this cleft in the rock, that is my very Lord Himself.  So I am less and less absorbed with looking at the walls and worrying over them, and instead seeking to fix my eyes on Christ, the author and perfecter of my faith.  In my life now, these walls at times also take on the sensation of being great crevasses where I am constantly in fear of falling.  I can become consumed with imagining the potential for loss in addition to the already present loss.  But there is something else here that I am only beginning to see the very edge of – it’s dimmest outline – with loss, that is real and painful and often full of sorrow, comes gain, comes provision, comes new.  It is a strange truth the Bible tells over and over, how out of death God can bring life.  He is the God of Resurrection, of Redemption.  The seed must fall to the earth and die in order for the plant to grow up.  The plant lives in direct consequence to the necessary death of the seed. (John 12:24)  I put forth all my great and mighty strength to attempt control, to dominate and reign over particular areas in my life to make them look like I want them to.  I am terrified to imagine what life would look like should they slip from my grasp.  I fear what loss my come.  The problem is not only that my strength is much, much too weak to control, but I am grossly lacking in wisdom and knowledge.  I have no way of seeing over the wall and knowing what blessedness might come with loss – what new thing the Lord might grow up in its place.  I was created in God’s image.  God created the world in seven days but He goes on creating endlessly.  Any creative person knows that creativity breeds desire to create more.  God is not done creating in His image – not in my image.  And thanks be to God for that because the image that I can imagine is distorted and small and much less lovely than the image God has in mind.  I want to rest in the Lord and be witness to His creation – to the wonders of the stars thick in the night sky, the looming mass of Mt. Rainier, the fuzzy unfurling of ferns and of my own life, of your life Elijah.

“What we need is some WD40,” I say, “and I’ve been trying for a week to get someone to come de-squeekify Allistaire’s crib.”  Action.  The nurse calls B&E immediately to put in the request.  No, B&E is not a railroad, nor real estate in Monopoly, though both come to mind every time I hear it.  Building and Electrical perhaps?  Within minutes the man arrives, can in hand, but now exclaims he is not allowed to use WD40 on the unit.  Let me do it then; he reluctantly hands over the can.  It’s midnight and I enter the dark room with the nurse before realizing the straw for the can is missing.  There’s no straw he says exasperated.  Fine, I’ll hold Allistaire, she’s awake now anyway with all this back and forth, and we’ll just drive the crib out into the hall and lube it up.  All this to make vitals and lab draws as stealth as possible.  All for the preservation of sleep.

I turn back into the darkness, Allistaire’s round white face and round white head the only things visible.  My arms reach out to lift her and I draw back in horror.  “There’s blood everywhere.”  Allistaire is sitting in a foot wide pool of blood and there’s deep bright red on the cuff of her jammies, blood on her blanket, blood on bear.  Not sprinkled blood, but a pool, and blood thick, near black and blood bright. Lights go on and we rush to strip her down and find the source.  “What about the WD40?” the man outside the door asks.  Uhggg!  Nurses keep arriving to aid the search.  Do you see anything we ask one another?  No, no, no.  There is NO blood on her body!  Where could it come from then?  We glance at her lines and see no blood.  Our eyes rush round and round her body.  There is no blood on her.  “Maybe she threw it up,” someone hypothesizes.  My already racing heart begins a thumping sprint.  What in the world could cause her to throw up all this blood I ask in terror.  What unseen threats could be inside that would cause expulsion of this kind?  Get the light and look in her mouth.  Only a yawn reveals a bloodless mouth.  Allistaire is shaking, shaking.  We wrap the warm blanket around her naked body.  There’s no blood around her mouth, no blood on her face.  Where could it have come from?  We ask the same question again and again.  The lines are examined more.  There is a wee bit of blood inside the line but this is common if Allistaire cries hard or coughs.  There is only a little blood in the line and none on the outside.  Well, there, in the clamp is the most wee amount of crusted blood.  The cap must have come off…and then gone back on.  She must have unscrewed the cap…and then got it back on.  What?  The caps are replaced, the lines are cleaned and a CBC (complete blood count) is ordered STAT (super crazy fast) as is blood.

I think I’m going to throw up.  I feel the heat creeping hot up the nape of my neck.  I need to sit down.  I need to hold Allistaire.  I need to sit down.  I’m a wuss.  What is my problem?  She’s fine.  She’s fine.  I really think I might throw up.  I leave her to the nurses while I sit on the edge of the bed.  It looked like a crime scene.  It looked like Allistaire must have been stabbed.  My mind knows she’s fine and my gut revolts against the sight of Allistaire surrounded by blood.  In a few minutes I regain my ability to stand erect and I rejoin the bedside party.   Her hematocrit (red blood cell count) is 19 and she needs a transfusion.  It was 22 yesterday so she was already getting close to needing more blood anyway.  This just accelerated the process.  The nurses filter out.  The night attending doctor stops by to check in.  Alyssa, our first year resident doctor, in beautiful composure, thought through the situation, discerned the necessary response and acted.  I was impressed with everyone’s response and ability to work so well together.  In the scope of emergency this was small.  But a view was gained and there was an odd delight to be witness to people doing well what they were trained to do.  The multiple daily declarations of Code Blue and requests for the Rapid Response Team are now met with a slightly lessened feeling of defeat and instead in this space has entered a sense of fight.  Code Blue.  Rapid Response.  This is time for “game on” and they do it well.  I praise God for this place.  I praise God for these people.  I praise God for intercoms that allow communication to go out fast and far.  I praise God for feet that run, for coursing blood in the cortex of the brain that results in analysis of the situation and decision of what action to take.  I praise God for machines that do what hands cannot.

Brokenness.  I am constantly surrounded by brokenness.  Everywhere I turn: another silent in-your-face scream that the world is broken.  A simple walk down the hall results in passing a computer screen showing a picture of a distorted little girl face.  I hear the words, “craniofacial malformations.”  I walk on.  I turn to the left and see ,out of the corner of my eye, the wheel chair with the mom following, the box with the tube like that of a vacuum cleaner, slung over her shoulder.  I know who it is though I’ve never spoken to them.  I know it is Chloe, only because I’ve heard her mom call her name, a little girl whose age is hard to discern.  She sits in the wheel chair, a great ring of metal encircling her head like a halo, except that it appears to be screwed to her cranium.  Whether she can turn her head to the left or right I do not know.  Could she look down if she wanted to?  Brokenness.  Metal and screws and contraptions trying to fix it.

The mysterious flow of blood occurred Monday night.  I wash the blood out of the bear, out of the jammies, out of the blanket.  Today as I go to get on the elevator I see the face of a father and the face of a son I know well.  We greet but our greeting is cut short when the father spys another man he clearly knows well.  He is disheartened at the sight.  “We were so sorry to see your name on the board,” he says to the other man.  The man says few words.  He says she’s fine.  “How long are you here for this time?” the father asks.  “Looks like she needs a transplant,” the man says, head lowered, rubbing his forehead under the brim of his hat.  The elevator is here and we all change positions.  I get on the elevator with my empty bag, ready to retrieve the clothes from the dryer.  Another woman get’s on the elevator, her bag full, ready to throw clothes in the washer. Three nurses also get on.  Two older and one younger.  The younger wipes her red, puffy eyes.  She wipes and wipes in the few seconds it takes to get to her floor.  I gather the warm clothes from the dryer and examine each.  The cuff of the piggy jammies shows no sign of the blood that soaked it a day ago.  The blood has been washed away.  No one would know it was ever there.  This morning, I saw my friend Sally as she got her first quad-espresso of the morning.  She said she was down late to get her coffee this morning because her daughter has been upstairs crying about the fact that she will never be able to have children.  We three women stand in a circle, each with a white cup in hand with the picture of a mermaid.  We stand there, we three, knowing there are three little girls, two years, 7 years, 19 years, that may share the same sorrow.  The seed of life possibly forever altered, possibly never able to unfurl into full life.  The conversation moves on, Sally goes up to the line for her second quad-espresso and returns.  We continue to talk and at some point she mentions that her daughter has never been one to hide the scar from her port in her chest.  The port she got nearly seven years ago, the first time she had cancer.

Yesterday I went to check the white board on the bathroom door to see if Allistaire could get in a bit early for her bath.  I run back to the room, elated and joyful.  I think she’s back I tell Sten.  I wonder what room she’s in.  Can I go find her I ask?  Go, go Sten says, and I run to the main white board searching for her name and room number.  I race down the hall.  Fifteen minutes later I walk back down the hall, heart heavy with news of a needed biopsy of her lung.  The cancer had spread there before, but it had gone.  There are a few much preferable and more likely possibilities, but the fear insists on standing in the background.  I wait with her until Thursday or Friday when they will do the biopsy.

Brokenness.  Brokenness.  At every turn there is brokenness.  At every turn there is a fight against the brokenness.  We come and go.  Go and come.  I rejoice with Heidi that she and her little Sam look they will be leaving soon, but I will miss her.  Every departure a joy and a sorrow.  Every return a joy and a sorrow.  The blood is gone from Allistaire’s piggy jammies.  Her ANC (Absolute Neutrophil Count) jumped from zero yesterday to 150 today.  During rounds they talked about a preliminary plan of when we might get to go home and when to do the next bone marrow test.  So soon, who could have guessed?  Her ANC has only been zero for five days.  I tentatively rejoice that our departure might be sooner than we had guessed.  When I tell Sang that we might be going home soon, she looks sad.  She tells me she hasn’t been to her home since October.  The brokenness gets mended but comes undone again.  Mend the tear.  Bind up.

The past few days have been so full I feel I cannot keep up with relaying the details.  The blood cultures proved sensitive to the antibiotic  clindamycin so it has now replaced the previously added antibiotic.  It joins the broad spectrum antibiotic, cefepime, that was first given in the early hours of Monday morning.  This was the doozy combo that resulted in cataclysmic diarrhea in the last round.  We’ll hope for less blow outs this time.  In order for Allistaire to go home she must have 3 consecutive negative blood cultures, with the last one remaining negative for at least 24 hours.  When this occurs, they will stop drawing blood cultures.  Then she can cease the cefepime once her ANC reaches 200.  The clindamycin must be taken for 2 weeks regardless of her ANC which means we will now be sent home with an IV pump and trained to give her IV antibiotics.  This afternoon resulted in yet another unexpected but ironically fortuitous discovery.  As Lysen, our nurse, was unhooking Allistaire from her lines until bedtime, she went to flush the line but had not yet undone the clamp.  Saline sprayed out in a sudden demonstration of the culprit.  In the perfect moment, in the perfect position of the line, a tiny hole was exposed, this the likely source of the infection and the loss of blood on Tuesday night.  Only the red line on her double-lumen Hickman has tested positive for the invader: streptococcus viridans.  It is in the red line that the hole was discovered.  The IV team came at once to Allistaire’s room and preformed a repair of the line by clamping it first with a bulldog clamp above the hole, cutting the line and attaching a new length of line with a new cap at the end.  A thin plastic tube covers the point where the lines join and they then inject glue with a syringe into both ends, filling the space.  This section of the line is then covered with a dressing and has to set up for 24 hours before it can be used again.  As a result, they will be unable to draw blood for cultures from this line until tomorrow evening, which will in turn delay our earliest possible departure by a day.  Of course, it is impossible to predict what her ANC will do so this might end up being irrelevant in terms of timing.  Tomorrow she will have another EKG to look for any heart damage from this round of chemo.  At this point they are scheduling her next bone marrow test for next Thursday or Friday which will be day 29 & day 30  since the start of round 2 chemo.  What I won’t go into detail about is the intense sickness the doctors said could, in rare cases, occur in conjunction with this particular infection in AML kids, referred to as a “chemical storm.”  Visions of dark, brewing clouds on the horizon, of funnel clouds, of tidal waves, of swirling ravage come to mind.  No one should use such vague, picturesque terms with me.  It opens up untold possibilities in my mind and even as I questioned one of the nurses about this “chemical storm,” I was not able to get much info.  I was only told it was a “cytokine” response.  The best I can understand is that it is akin to tumor lysis in which the tumor cells, once killed, spew their evil-doing innards into the blood stream wrecking havoc.  I guess swarms of dying bacteria can have similar effect.  I think I just went into detail.  Sorry.  Okay, what I won’t go into detail about is the bubble they attached to the top of Allistaire’s crib to try and keep her hands off the IV pumps and the unabomber straight jacket device we’re to try using to keep Allistaire’s curious George hands off her lines.  It really looks like she could shove a few sticks of dynamite in there if she wanted.

In the morning when I take a shower, I stand in the hot water forever, only the lure of a mocha and crocheting makes me want to be done.  I stand there with the shower curtain closed, not wanting to re-enter the world of reality.  It is a bit like a reversed, “The Lion, the Witch, and the Wardrobe,” situation.  Allistaire’s is still dealing with the realities of brokenness in her body.  Even when all seems perfectly well with her, it is impossible to simply move your body from one place to another to do ordinary things like eat and drink and shower, without encountering, repeatedly, over and over, brokenness.  We look forward to going but we know we will return shortly because they are not done mending Allistaire’s body.  When one day we leave at the end of this treatment, we know that like many, it is possible that we will return, if not for the reappearance of this cancer, then perhaps another, or perhaps because of a failing kidney, or withered ovary, or who knows, a bad fall on her bike.  Brokenness.  We fight it and fight it, we sew and mend and bind up but our repairs fail and our best attempts fail in their ability to prevent brokenness in the first place.  I don’t like brokenness.  I don’t want to need binding up and I don’t want to face the fact that I have weak points, vulnerable places.  I don’t want this for myself and I don’t want it for those I love, I don’t want it for anyone.

I know my words offer no resolution.  As I was writing, a letter I wrote to my little nephew, Elijah, this past November comes to mind.  Tomorrow I will offer my words from four months ago, not as a resolution, but as the beginning of sight the Lord has given me.

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Something’s growing in the petri dish – it has turned purple from the stain and is growing in round shapes, connected one to another in chains.  Apparently circles are better than rods – somehow I think I would have guessed that.  Rods growing inside you just seems a little more alien like.  They’ll let it keep growing and see what more they can discover about this wee bacterial invader.  All this fun in the lab because Allistaire spiked a fever last night about midnight.  Whenever a fever occurs, blood cultures are drawn immediately and a broad spectrum antibiotic is started.  They will continue to draw labs every 24 hours until they’ve had 72 hours of nothing growing in the dish.  She will also now continue on antibiotics until her ANC is 200 which means her days of freedom and unattachement to her lines are over.  All this is to be expected, however, and is precisely what needs to happen to keep her safe.  So far one of her two lines into her chest has tested positive for bacteria.  As the culture grows, they will also test it for response to different types of antibiotics in order to discern what antibiotic course is best.  Hopefully, the antibiotics will be effective and destroy the bacteria.  In a worse case scenario, they would have to remove her Hickman Catheter and have an IV for a few days.  Hopefully we won’t get to this point.  Allistaire has been much more tired and pooky which is quite reasonable.  She also hasn’t had almost any interest in eating.  On the other hand, she weighed 13.3 kg today which is the highest I can remember.  The other bit of good news is that her phosphorus level has gone down from last week and her kidneys have not been a concern.  Of course, I’m now remembering that one of the antibiotics she is on has to be monitored for it’s impact on her kidney functioning.  It is always so hard knowing that nearly every response to a problem creates yet another potential problem.  I was just talking with a mom tonight whose daughter has actually had two bone marrow transplants.  She is on dialysis and it looks like she may need a kidney transplant because of all the damage done to her kidneys in the process of battling her cancer.

I had a lovely weekend at home while dad stayed Friday night for me and then mom stayed both Saturday and Sunday night.  It was such a blessing to have time away and be able to be home.  Sounds like mom and dad had a great time with Allistaire.  Sten and Solveig also have had a nice time together over the last four days.  On Sunday, Sten took Solveig up skiing and said she is really doing well getting on and off the lifts and making her turns.  Solveig says she goes “swooshing” down the hill.  Sten and Solveig used our awesome “face time” feature on the iPhone to call us today.  Solveig and Allistaire didn’t do much talking but did a whole lot of giggling at each other and making silly faces.  I love seeing them interact and can’t wait until we can have Solveig home.  Once Allistaire’s ANC starts to come up we’ll nail down when she can journey home.  Our plan is to make it work one way or another to be home with us during Allistaire’s third round of chemo.  It’ll be a little crazy as she will have to go from place to place a lot but we need our girl home for a while.  Hopefully Allistaire will do really well and we can pray she doesn’t get a fever and have to come back into the hospital for a long time.  Allistaire’s fourth round will be the hardest of them all both because of the type of chemo, referred to as “blue thunder,” and because her marrow will be for worn out by then.  For this reason, our plan is to have Solveig return to Montana during that time.

Mom & Dad giving Allistaire a bath

Solveig up on the ski slope with Sten enjoying lunch

The Bible describes the land promised to the Isreaelites as “flowing with milk and honey.”  When Solveig was little, we were given a book that lists all sorts of wonderful books to read to and with your children.  The beginning of the book talks about how as parents we are to provide a life containing both milk and honey for our children.  Milk is the substance by which our very life is sustained – it is the crucial things of life without which we won’t survive.  But life is about much more than just survival, or at least we know in our core that it should be.  Honey is the sweetness of life, the beauty and joy, the substance which makes us delight to live.  In the picture above you see sweet Allistaire with her IV pole, and if you look carefully, you’ll see a bag and a vial with a dark yellow substance.  This was the time a few days ago that she was getting a transfusion of platelets.  Prior to this second round of chemo, her marrow had been doing a great job of producing platelets and her level had actually risen to 395.  On this day, her platelet count was 9.  She has to get a transfusion once it falls below 10.  She’s covered in bruises.  Blue rises up from under her skin all over because she isn’t able to sufficiently clot as a result of having so few platelets.  Platelets and blood are substances she needs to survive and we continue to be ever so thankful that she is able to receive them because someone gave them.  Budgets make room for milk, but honey is easy to cut, not easy to quantify in its worth yet we all know from the time we are small that sweetness in life is that for which we yearn.  Milk and honey are both essential to the pursuit of life.  A few days ago while Allistaire ate breakfast, we had the delight of having, Phil, a volunteer come to our room and sing and play his guitar for us.  His son had a tumor next to his heart nearly 40 years ago.  This experience moved him then and now to give back by being a honey deliverer.  Chemo is important, without it Allistaire would be overcome by Leukemia.  Scrambeld eggs and half pints of whole milk are essential to giving her body fuel to live.  But I think you’ll all agree, the little Allistaire we are trying to save is this one – this one who instinctively wiggles her bottom and claps her hands and woggles her head in immediate response to music, to one of the sweetest things in life.  It is this wee joyous being we long to see continue to grow and develop.

P.S.  Ever since Allistaire got her platelets and red blood she has been a much more agreeable little lass and has had far fewer fussy times.  She is ever my delight and I cannot get over what a wonder she is.  I so wish she and Solveig could be together during these days as I can only imagine the exponential joy they would have with one another.  Also, I continue to sleep much better and have not had a headache since I last asked for your prayers.  Thank you Father for this immense relief.

P.S.S.  Allistaire’s ANC (Absolute Neutrophil Count) is finally Zero!!  Now we wait for it to sit around at the bottom a while before it rises.  Last time it stayed at zero for 18 days.  Also, her phosphorus level was a tiny bit raised today which might be nothing but if it were to continue to rise it could mean that her kidneys are not working properly and that there could be damage from the chemo.  At this point they are not worried but will continue to monitor it.  Please be pray for the health of the rest of her organs and body that may have also been impacted by the chemo.