From time to time I have these moments where I just want to yell out loud, “Check YOU Out!”  Sometimes something happens or I come across something where I am utterly awe struck with who God is or what He has done.  When I was in high school, my friends would often mock me and called these “environmental moments.”  Just a few minutes ago this occurred but in a totally unexpected source.  Okay, so the truth is I’m sitting in Starbucks, enjoying some time crocheting and watching some Netflix while Allistaire is napping.  Looking through my Watch Instantly I saw a documentary called, “Between the Folds.”  Apparently I had watched all but about 15 minutes of this a long time ago, so I thought, hey why not.  The movie is about origami.  I know, what in the world?  Not what would immediately come to mind as fascinating or God’s glory inducing.  Yet, at the end of the film they start talking about how all sorts of things in nature fold including proteins.  They were discussing designing proteins that can fold in certain ways to very precisely target diseases.  I’m doubtful I need to remind you that I currently dwell in a land where disease abounds and where little changes in things like proteins have really big and disastrous effects.  The magnificence of the double-helix  of DNA came immediately to mind, as did one little fact I learned in my Biology 101 class in college.  We did a lab where we used detergent to pull out the DNA from onion skin.  While I don’t recall the specifics, I remember that the length of the DNA molecule so perfectly packaged up in a cell was mind-boggling.  Maybe you love math like I do.  Maybe you don’t but bear with me.  I just found this online about the crazy specific lengths of DNA:

“The DNA molecule is threaded so fine that it is only possible to see it under high powerful electron microscopes. To get a sense of exactly how long an uncoiled DNA molecule is compared to a typical cell, a cell is magnified 1000 times. At this scale, the total length of all the DNA in the cell’s nucleus would be 3 km — the equivalent distance of the Lincoln Memorial to the capital in Washington, DC.

The human genome comprises the information contained in one set of human chromosomes which themselves contain about 3 billion base pairs (bp) of DNA in 46 chromosomes (22 autosome pairs + 2 sex chromosomes). The total length of DNA present in one adult human is calculated by the multiplication of

(length of 1 bp)(number of bp per cell)(number of cells in the body)

(0.34 × 10^-9 m)(6 × 10⁹)(10¹³)

2.0 × 10¹³ meters

That is the equivalent of nearly 70 trips from the earth to the sun and back.

2.0 × 10¹³ meters = 133.691627 astronomical units
133.691627 / 2 = 66.8458135 round trips to the sun

On the average, a single human chromosome consists of DNA Molecule that is almost 5 centimeters.”

The point just being – wowzer?!  Can you believe how smarty pants God is to have designed something so ridiculously long and so important to be compacted/folded down to fit in such a tiny space?  Check YOU Out God!!!!  I wonder how much He smiles, how giddy He must get when He considers the wonder of this bit of His creation.  If it were me, I’d be pretty proud of myself.  It is me that is pretty impressed with you God.  Way to Go!!!  You’ve got SKILLS!

Today has been a day.  I know in the scope of those battling cancer, I’m having it easy, never-the-less, Allistaire has become increasingly challenging in her fussiness.  She has bits of time where she’s happy but it is punctuated by a lot of throwing fits.  I can honestly say I do not ever remember being angry with Allistaire until today.  Whether she is feeling crummy from her chemo or is moving  into 2 year old reality, I do not know.  Perhaps some of both?  Every meal is a challenge as her absolute uninterest in eating is met with my absolute interest and sense of responsibility in getting her to eat.  This adds stress to our day for both of us.  The rest of her awake time she does great until her will comes into conflict with mine and then a temper tantrum ensues.  It is always a challenge to know how best to discipline, but this environment and her situation makes it even tougher to navigate.  I think I may need a plan in place for when she starts to throw a fit.  I’m thinking we may need to just plan to stop what we’re doing and take a time out in her crib when this happens.  The other part of this challenge is that she seems tired but hasn’t always been sleeping as long as it seems she really needs.  She did not wake up this morning until 10:30 but then woke up early and cranky from her nap.  Last night I heard her moan/whimper several times.  I cannot imagine why she might be in pain so we are trying some additional anti-nausea medicine to see if this is the issue.  My hope is that this is a phase that will pass as she gets to feeling better.  Her blood levels are looking like they should.  Her ANC (Absolute Neutrophil Count) was 312 today which is a much more suitable level.  Her hematocrit (red blood count) and platelets are getting close to the threshold where she will be needing a transfusion of both in the next day or two.  Thanks for your prayers.  The following video is from the end of last week, so imagine this one fit times about 12 and you’ll have a better picture of our day.

Sten and I had a lovely Saturday.  The day was a glorious 65 degree, perfectly sunny, fresh, exhilarating day.  Despite a late start, we enjoyed a hike for the first time in a very, very long time.  We hiked just shy of 7 miles up and down one of the trails on Tiger Mountain.  It was exactly what we needed.  We pushed our bodies up the mountain and jogged all the way down.  There are few things on earth I love more than ferns and moss which were parading their happy, enchanted selves all around us.  The distinct smell of cool, wet forest caused joy to well up inside us.  It is a smell as old as my childhood.  Everywhere we looked, sun dappled through trees, new little sapling trees grew up on nurse logs, moss gathered in every nook, ferns laced out at every height, blue sky over head, birds twitting in the trees, an occasional gurgling steam, the soft ground under our feet.  We breathed deep the woods.  Just as the sun was dipping low over the reflecting waters of the Puget Sound, we came up through the trees onto a point in the late sun, the wind whipping up the ridge.  Later in the evening I could feel the salt crystallized on my face from a good exertion.  We could not have asked for a more wondrous afternoon.

The robins and red-winged black birds have returned.  There are buds swelling on the smaller trees.  Spring is not far.  I am both eager for it and a bit melancholy.  Seeing that a season is turning only makes it more obvious that time really is marching forward.  It is one thing to be in a hospital when it is cold and wet and dark outside.  It is a whole different story when you know you should be taking your two wee girls to the park.  We are doing well overall.  Sten is has booked his plane ticket to go visit Solveig.  He’ll fly out on the late Thursday night flight this week and then return the following early Tuesday morning.  Solveig is super excited as you can imagine.  Allistaire is doing alright though we had a very strange lab result today.  Her ANC (Absolute Neurtrophil Count) was 1624 today after being around 750 yesterday.  We’re hoping this is a fluke given that her ANC should be plummeting to zero any day now.  Up is not where we want to be headed at this point.  Hopefully it is a mistake but if not, please pray the doctors will have the ability to know how to interpret it.  Sweet Allistaire continues to be grumpy but pretty active.  Because her fluid requirements are much lower this round she has been able to be unhooked from the IV at night which makes for a more enjoyable night for both of us – she can move much freer and neither of us will be woken up by an alarming IV or a nurse coming in to clear pumps – yeah!

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At long last I bring you the happy little video of Allistaire in her own natural habitat.  This video was shot on Saturday, January 21st – her first day home since leaving on Friday, December 9th, 2011.

Today Allistaire had her last doses of chemo for this second round, called Induction 2.  Just like last time, she has done incredibly well.  She has not thrown up and continues to have a ridiculous amount of energy.  While she is sleeping a bit longer at night and taking 3-4 hour naps each afternoon, she continues to go buck wild crazy on the bikes.  She has made a lot of progress in her coordination on the bikes and now knows all the little tricks.  Just yesterday she learned how to push off with great force on the scooter and then put her feet up on the front and glide along the slick floors.  Today she has added screaming while driving to her repertoire.  She whips around the corners and today in an especially vigorous gliding session, she nearly rammed the Transplant Team with the scooter, while screaming at the top of her lungs, as they were doing rounds.  They are an especially serious group which only amplified the hilarity of Allistaire.  Now that Piper is gone (she got to leave on Tuesday), Allistaire cruises with her newest friends Allison and Stellablue.  For some of you the name Stellablue will be familiar.  She and her family are from Bozeman and we had the delight to meet them and take some laps around the Unit with them.  They’ve been our next door neighbors since we returned last week.  Can I just say that it is such a joy to have a little Bozeman come our way!

There are ways though that show us the chemo is having an effect.  Though Allistaire remains undaunted so far in her enthusiasm for the bikes, she has developed quite a fussy, grumpy-pants attitude the last day or so.  She has taken to stomping her feet and hitting her arms against her chest in demonstration of her angst.  We are working with her to articulate her wants and needs with words rather than in grunts and whines.  Her vocabulary has grown so much.  She continues to put two words together and occasionally three.  In the last week she has begun repeating nearly anything you say.  She has learned a few of the nurses’ names which melts their hearts.  It does not seem that the chemo has stunted her development.  She loves so many of the medical practices that she has become familiar with.  She loves to “wipe, wipe,” the end of one of her lines with an alcohol wipe while the nurse cleans the other line in preparation for flushing it.  Anytime a doctor walks in with a stethoscope she wants to listen too.  She is especially amusing in her joy for shining the light in her mouth.  She won’t budge open her mouth for the doctor to shine the light in but is happy to do it for them.  This is quite handy as they are regularly checking for mouth sores which are a common by-product of chemo.  We are working hard to keep her eating.  Every day it is a challenge to figure out what array of food to put in front of her in hopes that she will eat it.  So far she is maintaining her weight which we are thankful for as we would really like to continue to avoid the feeding tube.  Today, in fact, she had her first Frappaccino.  I had yet another headache and thought that given that it was a gorgeous 60 degree day, I would get some caffeine into my body with my first Frappaccino.  Allistaire loved it and had a great time drinking out of the straw.  Lastly, Allistaire’s counts have begun to drop as they should as a result of the chemo.  The day before she began chemo her ANC (Absolute Neurtrophil Count), was 1386 and is now 858.  Her hematocrit (red blood cell counts) dropped from 33.3 to 24.6, which means she’ll probably be needing a blood transfusion in the next few days.  Her platelets have dropped from 395 to 63.

From this point forward everything is really just a waiting game.  First we wait for her ANC to drop to zero which should occur sometime in the next several days.  Once it drops to zero it will probably stay there for 1-2 weeks.  When it begins to rise it takes 1-2 weeks on average for it to get up to 200.  Two-hundred is the level it has to be for us to leave the hospital again.  So from here we’re looking at about 4 weeks until we can go home.  Please pray that Allistaire will be free of fever and infection so that she will be as healthy as possible during this time that she is so vulnerable as her immune system is suppressed.  Pray too that she will keep eating enough to maintain her weight.  I too would love your prayers.  I have been struggling with nearly daily headaches which really makes it a lot harder to be here.  I’ve been trying to get more sleep (which is part why there have been fewer posts – sorry) but even on nights that there are relatively few interruptions, I have a lot of discomfort while sleeping and end up with muscle pain which then turn into headaches.

As before, I’m having some issues with getting some longer videos to post properly.  I’m going to get my techno husband on the task as he’s far better at this sort of thing than I am .  The following photos are of Allistaire sporting her “Angry Birds” hat that someone made.  A whole bag of them showed up the other day and the very cutest one was left for last and so it became Allistaire’s.

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There is a chapel here at Children’s Hospital on your left as you enter the Giraffe entrance.  There you will see a wall of windows facing west with four stained glass panels.  Faux candles flicker in the window sill.  A great tree sculpture fills the opposite wall.  There are chairs and a pulpit for a service.  This is where someone suggested I could come and cry, that it was a nice quiet place.  That was the day I wrote about doing Allistaire’s dressing change and how so much held back, wild sorrow was straining to be released.  I told her that this was not quiet crying I needed to do.  Yet because of her suggestion, I checked out the chapel a few days later.  It was late afternoon and bright yellow sun was breaking in under the low clouds, streaming out from the crack in the cloud in a wide plane of light that lit up the room with sudden honey warmth.  I walked about the room seeing all that it contained.  I was drawn to a little alcove in the wall where two enormous black books lay.  I expected to find a huge Bible.  Instead, I took in one of the most sobering sights I have ever seen.  Even to begin contemplating what I was seeing was daunting beyond words.  I knew that if it felt this weighty just to look through the pages, that I could not begin to truly imagine what each line written actually represented – a life, a beginning and an end.  On each line, in beautiful black script is written the full name of a child with their date of birth, and then, the simple numbers that tell you when the end came.  Your eyes scan the dates and calculate, how old was this child?  Some only a day old, some a month, another 5 years.  You read the name, the carefully selected name, the name that was to be written in a first graders thick pencilled letters, the name that was to appear in embossed letters on a diploma or wedding invitation, a name that would be the first impression on a resume.  On that day the last dates written in the memorial book were several months ago.  Today when I was in the chapel the last life ended but 6 days ago.  She was 8 months old.

When I was in junior high our youth pastor taught us one evening about a word that I will never forget.  He was talking about the verse in Matthew 9, where it says that Jesus saw the crowds and had compassion on them because they were harassed and helpless, like sheep without a shepherd.  The greek word for compassion here is: splagchnizomai; it means to be moved in your bowels.  Our pastor explained the meaning of compassion by describing a situation in which you watch someone slam a hammer down on their finger.  You literally feel their pain, you take in the situation and you double over in the pain that they are experiencing that you now share in; it has become your own pain.  Perhaps this word has stuck in my mind because of it’s crazy spelling or because my finger still throbs from hearing the story.  I think it has stuck so profoundly, not just in my mind, but in my heart, because it showed me a facet of who God that initially seems unnecessary.  Throughout the Bible, God, Jehovah, is described as a savior, a rescuer, a hiding place, one who lifts us up, binds up.  He is pictured as an able God with a mighty arm to save.  It seems to me that the only necessary quality of a savior is that one be able to rescue and bring to safety the one in trouble.  But God was not content to be a savior who is only able to rescue, to lift up from the pit.  God deemed it essential that He be a compassionate savior, one that can identify with our pains, who is familiar with sorrow, who knows the overwhelming grief of death, the sting of betrayal, the brokenness of relationship.  Compassion is a core component of His love for us.  I was reminded of this once again as we were studying Hebrews in Bible Study Fellowship this fall.    In Hebrews 4 it tells of Jesus Christ being one who can empathize with our weaknesses because He was tempted in every way, just as we are.  The sort of love that God has for us, that He defines Himself by, is a love that comes down, that walks alongside us, that feels pain in all it’s many facets as we do.  His love is not a love that is content to stay off and lofty and at a comfortable distance.  He is a God who has come down to us.  He stands before us and at our side wanting to show Himself an able rescuer, not only because He is mighty, but because He knows the load we carry.  He knows how deep is our crevasse, how heavy our burden.  He comes down to us that He might look us in the eye and tell us that He can lift that which is absolutely dragging us down.  He comes to where we are in order demonstrate that He has considered in detail our predicament and confidently asserts that He has a rescue plan that will work, He has the tools and the strength and the willingness to rescue us from death, in all it’s forms, even if it means His own death, because it did mean His own death.

Why do I look at those beautifully written black words?  I want to soak them up; I want to take them into myself.  When I see the bald heads and feeding tubes and IV poles, I want to imagine what it would be like if it were my own child.  I see the twisted, distorted features on the faces in the halls and I know that no medication can mend completely this brokenness.  I imagine what it would be like to have this journey be a lifetime, not just 7 months.  When I talk with the mom whose son was admitted after having posted his suicide letter on Facebook, I want to imagine her fear.  When I pass by the ICU sleeping rooms and I yearn to go in and lay down and close the door, I try to imagine the stories of those who do sleep in those small spaces.  I look at the time expressed by the simple dash, and I wonder about what joys and aches are contained in the wee expanse.  I want to feel the pain that is their pain but has not been my own pain.  Why?  Am I masochistic?  No, I am seeking to love my fellow humans, to love those He has put in my path.  Compassion, feeling the pain of another, is core to God’s love.  After Jesus rose from the dead and ascended into heaven, there is a way in which He left us, even though He will return one day permanently, never to again leave.  He said that in His leaving, He would send His Spirit and in this way He would be/will be present with us.  His Spirit now dwells in me and all who call on Him as Father.  Until Christ’s final return, as one indwellt with the Spirit of God, the mystery, I am the hands, the feet, the seeing eyes, the hearing ears, the tangible expression of the compassionate God who loves us beyond our imagining.  When I seek to grow in empathy, when I strive to imagine the details and I feel the welling of sorrow, I am able to stand closer with those who need their wounds healed, who are heavy laden.  I walk the halls with my new-found friends because I want to be close to the life they are living, to their reality.  I want to hear their stories, to know the joys and aches that eventually will be expressed, so absurd in its simplicity, in a dash between two dates.  I long to love my God by loving the people He created, by being the tangible expression of His love in this place where He can seem so silent, so far away, so oblivious of suffering and heartbreak.  Here I am, I am in this place, I ride the elevator.  I use the kitchenette.  I walk the halls.  And for as many days as the Lord gives me entrance into these doors, I yearn and I strive to grow in compassion, which is to willfully allow in pain, in order to more truly reflect the compassionate heart of God, that He might be seen as an able savior, one that has come down to us to walk with us through our days and to carry the great weight of our brokenness.

Eventually, though, I will leave this hospital and eventually, I may not know the names, much less the stories, of those whose lives fill this place.  I may even forget the names of those who have become dear to me.  The details of their stories will blur and blend.  What I am doubtful I will forget though, is the time Sten and Allistaire, and I have spent here.  What it has felt like to fear death in a very real and present way.  What it is like to have your family scattered.  What it is like to be weary.  I thank God for these pains He has given me for it has enlarged my ability to have compassion.  When I miscarried at 10 weeks and I had to go to the hospital to have the remnants of now dead life removed and when for 9 months after I battled sorrow and fear of whether or not I could have another child, I realized that I had barely touched on an experience that so many women throughout time and history have experienced.  Mine was a slight sorrow in contrast to that of many, but I knew that I had tasted this particular sorrow and that it would mark me.  If I turned sorrow over to the Lord, it had the potential to transform me into someone more lovely, more able to love, more able to hear, more able to see.

I’m including tonight excerpts from a few emails my sweet brother, Patrick, has sent me over the past few months since this all began with Allistaire.  In these he articulates his striving to try to love me in this hard time.  He tries to imagine himself in our shoes so that he may be more suited to love me.  He reflects on the pain in his own life and looks to it to give him a taste of my pain.  He does this because he loves.  In our gut we know, this is the truest sort of love, one that comes in close to where we are, and sometimes the place in which we dwell is a land of terror, of suffering, of sorrow.  Can my brother really know what it feels like?  No, he can’t and that’s okay, he doesn’t need to know completely.  But he knows in part and thus, he is better able to meet me, to search for words of comfort, and sometimes, simply better able to be present with me because he has sought to find me in the place that I am.  He has allowed God to use the pains he has experienced, to be transformed into a more lovely, and “more able to love” man.  You will hear his sadness and dissatisfaction with not being able to love me as he is striving to do.  The thing is, these words from my brother, this striving to imagine our pain as he reflects on the pain that has been part of his own life, well, they are some of the most treasured words I have known in these two months.  They have accomplished far more love than he can know, far more sweetness and comfort than I can express.  What feels like humble, insufficient means can be used mightily by the Lord.

Email from Pat from 12/26:

“I think about you a lot these days.  I call to mind the moments of my life when I feared for my children:  Lucy in the NICU; the call from Lucy’s doctor saying that she had a kidney infection and needed to be admitted right away; the call from Elijah’s doctor saying that he was positive for MCAD.  I remember those times and I try to feel those feelings again so that I can somehow come as close as possible to where you’re at.  But every time I know in my gut that my experiences, real and terrifying as they were, stop far short of where you’re at.  I feel guilty a lot.  I want to have a deep deep compassion – the “been there before” kind.  But I haven’t been there before.  I’m often left wanting to be encouraging but instead find myself silent.  My only accomplishment feels like having avoided the hollow “it’ll be ok” encouragement that’s been offered to me in the past.  I’m sure Mom and Dad would agree: it’s hard to sit on the sidelines.  I want to somehow take it away for you but I can’t.  I want to at least feel it with you, but it seems that I can’t do that either.  I don’t know what to conclude in that regard, but again find myself silent, listening, and waiting.  A really cheesy analogy just came to mind.  I feel like one of the hobbits in the The Lord of the Rings.  I’m not Frodo, the one carrying the ring.  I’m just one of the supporting characters that goes along for the journey.  Only Frodo can carry the ring and only Frodo understands what it feels like; the pain, the responsibility, the dread, the determination to keep going.  Anything I can do to lighten your load just feels inconsequential.

(Since I’ve already broken the rule against invoking Lord of the Rings references, I’ll keep going deeper into my geekdom.  One of my favorite parts of the book is when Frodo says to Gandalf “I wish this had never happened.  I wish the ring had never come to me.”  I love Gandalf’s response, “So do all who live to see such times, but it is not for them to decide.  All you can decide is what you are going to do with the time that is given to you.”  This idea is central in Viktor Frankl’s book too.)

Anyway, I didn’t write to seek sympathy.  I guess I just figured I’d take time to articulate what it’s like on the other side of things.  I’m sure that a lot of what I’m feeling would be echoed by others.  I love you very much.  I look at this situation (and life in general) and I’m blown away by the way that sorrow and blessing and joy are all woven together.   Life is a single cord woven together of many strands, and there’s no untangling them.  I’m sad and joyful at the same time.”

This is his email from 1/13:

“I always feel so inadequate to say anything to you about the situation
with Allistaire.  My mind keeps trying and trying to find connections
back to my experiences with Elijah, but then in my gut I know that
though we’re two floors apart at Children’s, the emotional stress of
our experience doesn’t hold a candle to yours.  Still there are shades
of understanding for which I’m thankful.  I was looking at Elijah’s
face last night as everyone was rushing around to figure out what to
do with his IV.  We held him down on the crib as they poked him over
and over again with the needle; first in his foot, then each of his
hands, then in the forearm, then back to the hands.  Even as a 2 month
old baby, he looked up at me with eyes wide open, bright red face,
screaming until no sound came out.  He seemed to be begging us to
stop.  Once they finally gave up we wrapped him up and held him.  As
time passed I was afraid, but just sat there looking at his calm,
sleeping face.  I couldn’t help but think how strange it is that he
could already be entering a metabolic crisis and we wouldn’t even know
it.  There’s no alarm that goes off when damage to his brain and liver
begins.  There’s no sad music that comes in on cue to let us know that
things are about to get bad.  We’ve watched too many movies I guess.
The real seems unreal in these moments.

Your last blog post was tough for your brother to read.  I’ve glimpsed
just enough in my own experiences to understand not how deep the
sorrow goes, but that it goes much much deeper than you’d ever imagine
it could.  Maybe that’s it…I can’t be where you’re at without living
it, but I can appreciate that it exceeds all expectations in sorrow,
stress, etc.  I remember telling Chris after we had Lucy that being a
parent had substantially expanded my emotional range.  The highs are
higher than anything I’d experienced before and the lows are so
terribly low.  And that’s just with a normal healthy kid.  Add illness
to the mix the range expands even further.  I wish the Elijah didn’t
have MCAD, but I’m thankful for it in that I fear I’d be completely
out of touch with your experiences otherwise.

I noticed the card you have on the wall in Allistaire’s room with the
quote “Everything will be ok in the end.  If it’s not ok, it’s not the
end.”  I got a bit choked up when I saw that.  It’s not a perfect
comfort.  “The end” is a long way off; and “not ok” means a lot more
than it lets on.  But still it was a sweet reassurance that given the
right perspective of time, things will be made right and good, even
our worst suffering.  I don’t know what to tell you other than that I
love you and that I’m confident that God will redeem our sorrows.”

At this point in my life I cannot know what it is like to walk a road in which you experience the death of your child.  I do not know what it is like to carry a child in my womb for 9 months and then only see that wee face for a day or a month.  I do not know what it is like to invest 17 years in someone who grows and grows even more part of you than when they dwelt inside your very flesh.  There are innumerable sorrows with which I am unacquainted.  But I keep asking the Lord to help me accept what He has given me and see it is a gift, as good, as something that will enable me to better love.  How can it not be a good thing to more capable of love, of offering words that bind up, of being a presence that brings comfort?

So you would think that I would have learned my lesson:  be careful what you ask the Lord for because you just don’t know how He might choose to answer it.  This is sort of along the lines of don’t tell God what you’re not going to do.  I said I never wanted to move to California – yep, four years in the Golden State.  I said I never wanted to be a Resident Director and for those four fine years in California, I did exactly that.  I said I would never date a younger guy again.  Then I met Sten; did I ever mention Sten was a sixth grader when I was a senior in highschool?  (scary, I know)  Well, this time I didn’t tell God that I wasn’t going to do something.  I asked God for something and am now reminded that He often chooses to answer our prayers, the petitions of our hearts, in ways we would not choose ourselves.  Perhaps this is one of the ways He shows His “otherness.”

Last Wednesday, while Sten was in the out-patient HemOnc clinic with Allistaire and meeting with one of our doctors, Urmilla Uparker, he casually mentioned that at least this round of chemo we could go home after the chemo was done.  Urmilla told him she didn’t think that was the case because Allistaire is under 2 years old.  HOLD UP!  What?!  No one had ever said anything to us about Allistaire’s age being a factor in terms of us having to stay in the hospital.  At the beginning of all of this we were told that we would have to stay in the hospital until Allistaire’s counts rose to 200 for only the first round.  On all other rounds, we could return home as soon as chemo was completed and only have to return if Allistaire got a fever.  After a number conversations with mixed information on the subject, our current attending doctor, Dr. Julie Park, spent some time with me Friday afternoon going over what the next three rounds of chemo will look like and about possible time frames.

In short, it is accurate that because Allistaire is not yet two, we will have to once again stay in the hospital until her ANC comes up from zero and returns to 200.  The last time this took 5 weeks from the first day of chemo until her ANC went over 200.  It is possible, I am told, that because her marrow is starting out at a healthier place this time and because this round of chemo is a little lighter than the last, her counts may recover a bit faster.  This means instead of staying 8 days like we thought, we will end up being here 4-5 weeks.  Assuming, we get to go home for a few days again, this puts the start of the 3^rd round of chemo at about the middle of the first full week of March.  By this time, Allistaire will be two as her birthday is on March 6^th.  The doctor said she will push for us being able to go home at the end of this 6-day round of chemo if Allistaire does amazing with this current round.  Of course if she gets a fever or has an infection, we will have to return to the hospital within and hour.  She will then be put on IV antibiotics and have to stay in the hospital until her ANC gets to 200. The reasoning is that because of Allistaire’s age, she is limited in her ability to communicate if there are issues going on for her.  We have to rely on external signs and things that can be tested.  Because her immune system is so suppressed by the chemotherapy as it kills cells, her body is unable to mount much of a response to illness and infection.  This means that only subtle signs may be visible even when there could be serious issues going on.  Staying in the hospital allows the doctors to monitor her on a very frequent basis.  More than likely, Allistaire would begin her fourth and final round of chemo around April 19^th, assuming a total of 6 weeks from the start of the 3^rd round and including a few days at home.  Apparently, on the last round everyone, regardless of age, must stay in the hospital until their counts recover.  This is due to the fact that this last/4^th round of chemo is different from all other rounds in terms of the types of chemo and just as intense as the very first round.  As a result, Allistaire’s blood counts may take longer to come up at the end because of the severity of the last round of chemo and because of the cumulative effect of all the rounds on her marrow.  At the end of each round of chemo, Allistaire will have another bone marrow test just as she did the last time.

Once Allistaire is done with all of her chemotherapy, and assuming there is still no detectable cancer cells, thus not requiring a bone marrow transplant, her ANC must rise over 1,000 before she can have her Central Line removed.  After that, she will come into clinic several times a week for a few weeks just to make sure all is well.  Beyond this, I am told that she will need to have monthly doctor visits where her blood will be checked for the first few years.  She will not need another bone marrow test unless there is reason for concern based on her blood tests.

So, July.  Perhaps in July we will finally all four live under one roof again.  I cannot tell you how disappointing and daunting this feels.  Again, I know we have MUCH to rejoice in!  The fact that our journey with this illness could be done so soon is incredible.  If Allistaire were to need a transplant, our journey might not be done until over a year from now.  Nevertheless, I so had hoped we just had (8+6+6) = 20 more days guaranteed in the hospital.  I knew if Allistaire got a fever that could change things dramatically, but you hope for the best.

So this is the part where I get back to the way God seems to answer prayers in ways we would never choose.  While my brain had already put the pieces together on Thursday, it wasn’t until Friday evening that the reality of God’s seeming answer got fleshed out.  Friday night I was all excited about going to craft night at Rachel’s house with my sister-in-law Briana.  Oh yeah, an evening hanging out with women folk, crocheting and eating chocolate – maybe even drinking wine – sounds great to me!  About 15 minutes before I was about to head out, my friend calls on the hospital phone.  Her son was here when we first got here and on day 77 since his transplant.  She was such a blessing to me especially in those beginning scary days when everything was new.  She willingly helped me understand and learn about life here at SCCA.  Not only that, she walked laps around the Unit with me while Allistaire rode the bikes.  When it was time for them to leave the hospital, not for home, but for the Ronald McDonald House across the street, I was so sad that I would not have her in my daily life.  I would walk by their old rooms and there were new faces laying in the beds.  So on this night when she called and wanted to know if I was up for a visitor, I was bummed at the timing but said that it wouldn’t work because of craft night.  Then I asked about her son who she said is doing great.  What wasn’t great was some of what came out of their summary meeting – the one you have when you’re far enough out from your transplant that you can actually go home to your house and be an hour away from the hospital.  “They wouldn’t say that he was cured,” she began to cry.  She said she had become so accustomed to having to take one day at a time that when they said the cancer could still come back, even after the transplant, especially in the next 8 months, she felt utterly overwhelmed.  He got cancer when he was 8 months old.  For two years he fought it, for two years he was healthy.  Then it came back and he had more chemo then a transplant at the end of September 2011.  Because of the all the chemo he’s had and then the radiation that’s also a part of transplant, he is now at higher risk for other cancers, even if his original cancer doesn’t come back.  My dear friend is overwhelmed and rightly mourning the loss of innocence for her son who will never know a life apart from the real possibility of cancer.  I can be late for craft night I say.  I’ll be right over.  The Lord answers prayer.  Sometimes His answers don’t fit with what we have in mind or what is convenient for us.  I asked the Lord to open my eyes and give me ears to hear and to be sensitive to His Spirit.  I asked Him to allow me to love and to support and to rejoice with those who are rejoicing and to mourn with those who mourn.  Friday night, He gave me something better than craft night.  He answered my prayer.  He gave me an open door to love my sweet friend Stefanie.  I was able to be present with her and to mourn with her.  I feel very privileged to be have been able to do so.  These next four months I wanted to be mostly home.  These folks here in the hospital are here, they are not in my house.  It seems the Lord has made a way for me to be here in this place longer.  What seemed to have been cut short, only seemed that way.  God has lengthened my road and I thank Him for it.  It is once again, not what I would have chosen, but it is what has been given.  Thank you Father that your ways are not our ways but your ways are higher than the heavens.

Tonight Allistaire is receiving her fourth night of chemo – by tomorrow morning she’ll be half-way done.  She continues to do great, though she is definitely tired and sleeping late into the morning and taking long naps.  Apparently she had enough energy to chase Piper  around the Unit this morning and I did hear something about my dad actually running around the Unit, pulling Allistaire in the red wagon while chasing Piper who was riding a bike.  Good times, great people!  Speaking of, Sten and I had a great time hanging out with my brother Patrick, our sister-in-law, Briana, and our little niece Lucy who will be 3 a few days after Allistaire turns 2 and little man Elijah who is just 3 months old.  Here’s a little peak from our visit tonight:

So much is the same and so much is different.  This evening Allistaire and I drove to Seattle Children’s Hospital on a lovely, sunny winter afternoon.  This time there was only one little face reflected in the rear view mirror.  I know where to park and I spy Carolyn in her hot pink shoes, our first year resident this past month, as we walk in the entrance.  I greet Ronin’s dad in the elevator and Romona at the front desk.  Kim is our night nurse once again.  I rejoice to see little Faith actually pushing herself along with her own feet on one of the bikes and I cheer with her mom, Sang, at how much she has progressed.  Even before we settle in our room, we have to go see Piper who shaved her head with her aunt and grandpa over the weekend.  We are fortunate enough to be able to move back into our old delightful room with the river and colorful fish on the wall.  I gathered our goods from the lockers upstairs where we stored them while we were away.  I moved all of our things into the room, back into the old places.  I have my whole system down: 2 med cups for my night and morning medications, a pitcher of water and a cup, my glasses and ear plugs on the window sill by the bed, an extension cord that reaches by the bed so I can charge my phone and computer, a Trader Joes bag I pack at night so that I can just sneak out of the room in the morning to get ready for the day before Allistaire awakes, I lay out my pajamas and the shoes I wear around the hospital – my favorites – the old green Asics with the aqua stripe down the side.  I make my bed and know now to hook the fitted sheet around the base of the chair-bed to avoid cold drafts.  I remake Allistaire’s bed with 3 pink sheets, one on each side and one down the middle.  I set up her CD player with the relaxation music and put the framed picture of Solveig on the side table.  I put tape on the back of Allistaire’s sign I made for her door and secure it back in the same bottom left-hand corner.  Almost immediately, Allistaire wants to ride bikes and she picks out one of her favorites, the one with the red frame, yellow handle bars, green back basket and broken yellow wheel.  A boy passing by offers several times to help us with the bike – nope, I got this one, I know this bike well, I know just how to fix this wheel.  As we loop around the Unit we greet Nicki and Kassidae, Kiflom, Megan, and Briana.  In so many odd ways, we have returned home.

Yesterday morning I lay in bed in the delightfully, cold blue room at Sten’s parents house in Montana, not wanting to get up.  I knew that once I got out of the bed, all of the subsequent steps would cause me to walk away from my beloved Solveig, to fly away from the expansive peace inducing sky of Montana, to drive away from my sunlit house and all of my plants.  As I packed our things at our house this afternoon and watched Allistaire’s nuddy spin, her tubes flying out in the circle of her dance, I felt a little sad that we had to leave the life we had so quickly acclimated back to.  Yet, this trip to the hospital is almost completely different from that first trip.  We return to a world known to us – to sights and sounds, procedures and faces we know.  We are not surprised by the tiny purple bin we store our food in.  We know how to silence the alarm on the IV pump and that when ordering grilled cheese always ask for “cafe style.”  Andy drops off the snacks he knows we always ask for: 2 bottles of water, a few packs of Ritz and gold fish crackers.  I set out the diapers and wipes on the counter so the night nurse doesn’t have to rifle through the cabinet looking for them.  I wipe Allistaire down with the chlorohexadine wipes before putting on her jammies and place her diaper in the pink pail to be weighed.  As I type this Allistaire is getting her first chemo and I know I will now have to use gloves every time I change her diaper for the next eleven days.

Nearly everything is familiar.  What is utterly new is being in this place and having a pretty healthy daughter.  What is new is the knowledge that there is no detectable cancer, replacing the fear that previously loomed.  Allistaire’s hematocrit is 33.3, 30 – 40 being normal.  Her white blood cells are still a little low but far higher than when we first came.  Her platelets are 395 and her ANC is 1386.  Nothing is guaranteed but we are told that it would be highly unlikely that they would find any remaining cancer cells in subsequent bone marrow tests given the great results we’ve already had.  This means we should not expect Allistaire to need a bone marrow transplant.  She has officially been placed in the “low risk” category.

As I said before, it seems we’ve had it too easy and I wonder what it will be like interacting with the other families now knowing we don’t necessarily share that same foreboding, that same ache we try to hold at bay, that shadow that follows our day – the threat of death.  As in the beginning, I do not know what the Lord has in store, but again I sense Him urging me to stay alert, to keep my eyes open for what He is doing and want He may do in and through me.  A couple of years ago I despaired of life.  I had no intention of going out and ending my life but I was so weary of finite human existence that I just wanted to be done.  I knew that when death came, I would be with the Lord and that is ever so much better than the constant, unrelenting, monotonous struggle with one’s own sin, the sin of others and the incessant suffering I heard in detail about every day on NPR.  I despised life in between “the already and the not yet.” One day I was relaying my struggles to my mom and asking out loud what the point was of going on.  Her response was short and simple; something I’d heard a thousand times before, but somehow had utterly forgotten and disregarded.  She reminded me that my life is not just about me, but that I am to be a light in a dark world, the face of Christ, His hands and feet, voice and ears too.  It came to me as a shock to hear this and realize how far off I had been and how clearly I was only considering myself.  I find myself now in a place where I have been freed up in large part from my own burden.  I want to be that aroma of life described in 2 Corinthians and a star in the night sky as it says in Phillipians 2.  I want to be on the look out for how I may love, encourage, lift up, comfort, rejoice with, mourn with and be present with.  The Lord has opened my eyes to a whole new world and I feel the weightiness of the responsibility that comes with such a treasure.  Please pray that I would be sensitive to the Holy Spirit and know His leading.

Thank you to all of  you folks who have brought us meals and sustained our bodies.  Thank you for all of your prayers which have continued to bear us up.  Thank you to you who supplied airline miles so that I could spend four wonderful days with my sweet love, Solveig, in Montana.  We had a delightful time with each other and it was pure joy to blow her a kiss goodnight as I closed the door to her room each night rather than doing so over the phone.

Please be praying that these next 8 days of chemo would be effective at killing any remaining cancer cells in Allistaire’s body.  Please pray that her lines would continue to be infection free and that she would be spared from fever.  Praise the Lord for all that He has accomplished in little Allistaire’s body and that as we got out of the car tonight in the hospital parking lot she said, “Yay, Yay, Yay, Yay,” over and over and clapped her hands.

Ohh HGTV (Home & Garden Televsion), the perks of being in a hotel.  Okay, let’s be real, I SO don’t want to be in a hotel right now.  I want to be in my own house, watching Allistaire toddle about and watch what she does when she sees her room and welcome home Sten after a day at work.  I oddly think I might feel more confined here than being in the hospital.  Sleep is definitely better here but once you’re awake, there’s not a whole lot to do.  I’m just hoping we don’t spend all of our time away in this room.

You know what I’m just realizing?  How quick and easy it is to fall back into old patterns.  Here I am grumbling about being in a hotel, about the fact that I can’t go home, about the fact that things have once again turned out different than I thought they would, different than I want them to be.  What irony.  Haven’t I just experienced 40 days of things not going how I want and learning that I need to entrust it ALL to the Lord, to look expectantly for what He is doing – despite the fact that it’s different from what I think would be great?  Haven’t I thanked God for beginning to teach me to be fully present in the moment and to release my clutching control and be at rest in what the Lord has for me?  After all that has happened you would think I would have gotten the memo that I am not in control AND that’s okay, because God IS in control!  It’s laughable really.  Allistaire fell off the little bike just minutes before we were supposed to leave the hospital.  I was telling her to get off because she didn’t have her helmet and plunk, she fell off and hit the back of her head.  We had to wait for a doctor to come examine her and the nurse had to fill out an incident report.  We were at least an hour delayed in leaving.  Then we couldn’t go home because the roads were so icy and dangerous that there would be no way we could return to the hospital within an hour if Allistaire got a fever.  And now of course, the roads are fine but we can’t go home because the electricity is out and we have no idea when it will return. Like I said, laughable.  So I willfully choose to look for the abundance that God has provided.  Thank you God for a safe place with heat and hot water and electricity.  For conveniences like a microwave, a refrigerator, a TV, a gigantic bed that does not convert into something else or require a thermarest, for no beeping sounds or eerie glow of mechanical lights and quiet and the resources to pay for such accommodations.  I thank you Father for a daughter who is well – who is happy and goofy and full of joy and as far as we can tell: absolutely devoid of cancer!!!!

I hope you enjoyed the videos from our departure from the hospital yesterday.  I figured a picture is truly worth more than a thousand words and I just was whoop tired and didn’t have it in me to try to put words to what has transpired.  I still don’t think I’m at a place that I have words.  Like trying to grab hold of the view of a spectacular sunset streaming over mountains or sea with your hands to shove it into your pocket so that it cannot escape, I feel utterly incapable of using such finite means as words to convey or even experience what has happened.  I actually feel a lot like I did when we were told Allistaire had cancer.  It was like my heart and flesh were an impermeable surface through which such realities could barely penetrate and only slowly dripped into me.  These 40 plus days have been a soaking in, a time in which the absolute tangible realities of sickness and death have infused themselves finally into my heart and mind.  To suddenly be thrust into the reality that they can find no cancer in Allistaire, that her life seems to have been saved, I guess it is like the shock of walking suddenly into blinding sunlight after having grown accustomed to living in only the dim.  I do thank God.  I do, but again, my prayers feels so frustratingly brief.  Thank you God.  Thank you God.  I have genuinely believed all along that God was fully capable of bringing absolute and complete healing to Allistaire.  In that sense I am not surprised that there is no evidence of remaining cancer.  I think I am in shock that God would give this to us.  I wonder, why us God?  Why should we have it so easy?  I think about the faces, the flesh, the brokenness of those who still sleep with beeps and green glowing light and tubes and dripping medicine, about those who still sign up for bath times on the SCCA Unit.  We will be back there, soon actually, but everything has changed for us.  Three more rounds of chemotherapy really seems so insignificant.  It feels like the shackles of fear and sorrow have been unlocked and simply slip off our ankles as we step forward.  In the beginning, it was asked, “Why would God do this to us?”  I thought, why not us, who better really to walk such a road.  We live close to this place of extraordinary healing.  Yes our lives are greatly disrupted but we are close to our home and our family and friends and church.  We have an incredible support system between our family and friends.  We have two cars so that we can come and go as we need.  We have financial resources.  We speak English and can walk up to the doctor and ask our questions whenever we want.  We can clearly convey our needs to the nurse without an interpreter.  It even turns out being white is once again an undeserved advantage as there are far more options for a bone marrow donor, if we were to have needed that, than if we were of another ethnicity.  Most importantly, I knew that God would uphold us, that he would provide the way through the fire.  In sum I think we must accept what the Lord gives us, we cry out in our need and we lift up our face in praise for all of the bounty, tangible and intangible, that He has given, in times of brokenness and in times of binding up, of healing and great joy.  We didn’t deserve a child who might die young of cancer and we don’t deserved a child who is healthy and lives.  This is not about what we’ve earned.  This is about a God who is intentionally at work in the world because He loves us, not because of what we have done but simply because in the mysteriousness of being God He has chosen to utterly delight in us and be willing to go to great ends to demonstrate the truth of His love for us.  There is much to reflect upon and so, so much to give thanks for!

I want to provide the last bit of details I was told by the doctors regarding the final test results on Allistaire’s bone marrow test.  As mentioned before, on Wednesday afternoon we got results back from tests completed at Children’s which showed no cancer.  Another part of the sample was flown to a pathology expert who uses an even more sophisticated Flow cytometry test to count the number of cancer cells in the sample with a level of precision down to .01% (I think I have that number right).  This incredible test allows antibodies to bond with a number of proteins on the surface of the cells in the sample.  Each cell is then passed/sent one at a time past a laser which hits the antibody which then releases a specific wavelength of light or energy.  The unique wavelength of energy is then read by the machine and labeled as a specific type of cell.  In this way, each different type of cell in the sample can be counted, including any cancer cells present.  This test is conducted on the aspirate or liquid, bloody portion of the marrow.  They found 0% cancer cells in the aspirate.  I really struggled with understanding the significance of this wonderful test result on the aspirate given that they did not find any cancer cells in the aspirate in the very beginning.  It was explained to me again that when Allistaire first came in, the bloody portion of her marrow was nearly empty of any type of cell.  They didn’t find any cancer cells originally in part because there were almost no cells to be seen.  In addition, the original sample was not sent out but only completed in house.  In order to get the percentage of cancer cells or blasts the first time around, they actually had to pulverize the biopsy sample of the bone in order to get it to go through the Flow cytometry machine.  After pulverizing the bone biopsy in the beginning, they determined that Allistaire had 21% blasts.  This get’s all a bit confusing because blasts are simply immature cells which we all have approximately 1-2% of at any given time because all the blood cells start out immature but the healthy ones eventually mature into healthy functioning blood cells.  Cancer cells remain blasts/immature and thus cause major problems by reproducing at high rates, not producing useful cells, blocking out production of healthy cells and secreting materials that can have other damaging effects on the body.  In Allistaire’s case, her cancer cells produced a web like structure of collagen fibers which is likely responsible for the fibrosis and thus lack of cells in the aspirate.  I am told that because they were able to get such an incredible sample from the aspirate this time, they only conducted the Flow cytometry test on the aspirate and only looked at the biopsy under the microscope.  The morphology test (use of the microscope) only showed a few blasts.  Again, all healthy bodies have small numbers of blasts in the bone.  It is not possible to determine what type of blasts these cells are using the microscope.  I assume that because the aspirate looked so good and because there were a healthy quantity of blasts in the biopsy, the feel very confident in the results.  I of course, questioned the doctors, are you sure you feel good about these results?  Is there anyway they could have mixed up the samples, etc.  Dr. Pollard told me the pathologist, to whom the sample was sent out to, said that Allistaire’s sample was of incredibly high quality and that they wish all samples they work with could look like hers.

Onto logistics.  We are free from the hospital until next Wednesday at which time Allistaire will have labs drawn, see her doctors, have an EKG of her heart conducted and a lumbar puncture for the 2nd round of intrathecal chemotherapy.  The EKG is being done in order to assess if there is any damage to her heart as a result of the 1st round of chemotherapy.  One of the side-effects of one of the types of chemotherapy Allistaire receives can cause damage to the heart.  They did a base-line EKG prior to the first round.  The intrathecal chemotherapy goes directly into the spinal column in order to kill any cancer cells that may have left the bones, entered the spinal fluid and traveled to her brain.  No cancer was located in her spinal fluid prior to the first round of chemo, but as in the case of the first round, this is part of their protocol as a preventative measure.  The next day, on Thursday, she will be re-admitted as an in-patient on the Seattle Cancer Care Alliance (SCCA) Unit.  This round of chemotherapy will be 8 days long.  Unlike the first round, this time we can return home as soon as her chemotherapy is complete.  We will have to return a few times a week for labs and doctor visits.  Should Allistaire get a fever (or spike a fever, as they like to say), we will have to be re-admitted and put on antibiotics.  In this event, we would unfortunately have to stay until her ANC rose to 200 again.  This means that on one hand we could be home for around 3 weeks before the next round of chemo, or, as in the case of round one, we could end up spending almost all of these three weeks in the hospital again. On her first round of chemo, Allistaire finished her chemo on Christmas morning and the very same afternoon got a fever.  Had this happened on any other round it would have meant staying in the hospital 25 days past the end of chemo.  Please be praying that once chemo is complete Allistaire will be fever free and we can enjoy some semi-normal time at home together as a family.  Our plan for Solveig is to bring her home after this second round of chemo.  Also, I now have a plane ticket to fly out late Saturday night to Bozeman, Montana where she’s at with Sten’s folks, to visit with her through Wednesday afternoon.  This will enable me to have a few days with Solveig and then bring Allistaire back into the hospital on Thursday.

*Quick update:  Our power was restored late Friday evening and we were able to return home to a 56 degree house.  We all slept in until 10:45am this morning.  I think we might have been tired.  The day has been glorious.  We awoke with the bright reflected light of snow.  Allistaire giggled in her crib and pointed to the window, saying, “Liiiight,” in her breathy sweet voice as I opened the blinds.  All morning she went from room to room exploring all of her favorite things: playing the piano, pulling out books and blocks and balls, opening the drawer to the coffee table and pulling out the coasters and remotes, she tried on Sissy’s boots and rode the horse on the stick.  We ate a delightful breakfast of apple and chocolate chip pancakes and bacon – our favorite Saturday morning tradition.  We gave Allistaire a bath and changed her dressing and the caps on her tubes.  She’s taking her nap now and I am almost all packed up for the airport.  I could literally not ask for anything else – well, I take that back, the only thing that could have made it more complete would have been to have Solveig with us.  But thanks be to God that in hours I’ll be in Montana with our wee love!