Monthly Archives: January 2012



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 3rd 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 6th.  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 19th, assuming a total of 6 weeks from the start of the 3rd 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/4th 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:


Deja Vu


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.

Home Again, Home Again, Jiggidy Jog!


Being home Saturday with Allistaire, seeing her move from one room to another, doing the things she used to do…finally it started to sink in, finally I started to believe that God may have given me back my life.  Somehow it felt like, as the minutes of the days progressed, that I was stepping back in to where life had left off, as though the past 51 days since this began had all been a bad dream.  Of course Solveig, is not here and we have to use Press & Seal to cover up tubes that hang out of Allistaire’s chest and flush her lines every day and return to the hospital in several days for more chemo.  Life is quite clearly not what it was, but these are just details and their end is in sight.  It seems that, if the wonderful results are true, that God took us radically off course for a time.  To say that we have been off course though makes it seem like an accident, like some mistake, as though the right path was not taken.  To say that God willfully allowed Allistaire to have cancer is hard to swallow, it gets at the question of how a good God can do such a thing, or at the very least, be a bystander.  It is nearly midnight now, and as often seems to be the case, I find myself starring at this question and usually late at night when I feel incapable of delving into the depths of this mystery.  This is such a significant question, I think perhaps the ultimate question: is God really good like He claims to be?  How can I believe this in light of all that is so clearly wrong in the world?  How can one make sense of pain and suffering in the world?  Is it only a cop-out to say that it is a mystery?  That God’s ways are not our ways? While I do believe there is a fair amount to consider and say on this topic, nevertheless, much remains mystery.

What I can say is this, the life that God seems to be giving me is not the life I had, it is an altered life.  There are new qualities and dimensions to my life that were not previously present, or perhaps were in such a seed-like form that they were unrecognizable as newly growing life.  A seed is often unlovely and does not readily draw one to itself, but it is the substance from which life and beauty and fruit eventually come.  I cannot quantify the breadth and depth or give a numerical value to thankfulness, to deep seated rest and satisfaction, to expanded empathy and compassion, to peace, to hope.  I cannot measure out for you the extent of abundance that is rising up from these days.  All of these and more have merely begun to unfurl.  I do not know how far they may reach.  How can I set these next to the readily evident value of my beloved’s life and claim that they are somehow on par, or perhaps dare I say, of possible greater value?  I know, it is the one thing that even suggesting seems so wretchedly wrong.  How, if I really love my child, can I even utter these words?  How could anything be worth Allistaire’s life?  I believe that so much of this is about scale.  I do not believe that God is in any way devaluing Allistaire’s life.  I think that it is the very great and known value of Allistaire’s life that allows me to see, in greater clarity, the greatness of what God is offering.  What is it then that God is offering?  He is offering the truest means of the most abundant life which is relationship with Him, resting in His absolute goodness.  But this isn’t just goodness, like all prim and proper and staunch, this a goodness that is sweet, a goodness with the zing of ginger and tang of lime, a goodness that is giddy with delight for us.  Why must pain be a part or even a means of entering into this communion with God?  There is so much to this question, so much that so many have wrestled with throughout time.  I ask another question, is it possible that there is nothing of greater value than coming closer to the living God and having the veil pulled back a bit to see more of who He truly is?

In the few months before Solveig was born I found myself a little depressed.  I could tangibly point to the things that would be lost with the arrival of a child in our life.  So much freedom would be exchanged for constraint.  No more fun Friday nights going out to dinner and a late night movie.  No more day long road trips.  A lot less spending money for fun things.  No more of the sweetness of it being just Sten and I.  Once I had Solveig, I wondered how I could ever convince anyone without kids that taking in the sweet curve of her cheek, that watching her chubby hand hold a crayon, or the sound of a squeal of delight could possibly be worth what one gives up when you have kids.  It just seems sappy and cliche.  But if you’ve held your own child, you know in a flash in the deepest, truest part of yourself, that none of those things lost can compare with what you have gained.  It does not change the fact that they are lost or that they had value in your life.  This is an imperfect comparison, but it begins to describe what I sense God is doing in my life.  He is bit by bit, revealing more of Himself to me and it is a treasure that cannot be constrained by the finiteness of words or of dimensions know to us.  Yes, it can all seem like a cop-out; mystery is a handy explanation.  Yet, I have tasted of the Lord.  He has not given me back the life I had.  He has given me back an enlarged life, a more resplendent life, a life whose flashing colors have no name in our own tongue.  Would these words come from me if the results of the bone marrow test had been what I most feared.  I tremble to say yes, but I cannot know because at least for today, it is not what He has given me.  I thank God today that He has given me more, far more than He has taken.

*Also, I’m SO bummed – I have such a sweet video of Allistaire playing and dancing in her room that I am just having a heck of a time with – nothing I do will make it work on here.  So for now, sorry to deprive you of such wonderment but I’ll keep working to figure out the glitch.

Here are the details


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!

Preliminary Results of Bone Marrow Test


After a night of waking up numerous times and finally asking for pain meds for Allistaire at 2:15 am, I got dressed this morning in the dark, debating with myself whether or not to ask for Allistaire’s ANC before I went to get ready for the day or when I returned.  I had come to the conclusion that I would wait when I saw an unexpected sticky note on the bathroom door, joyously stating in multi-color “ANC: 288.”  The shower this morning was not a place to cry in privacy but a place to praise God over and over with two-word prayers.  Thank you. Thank you.  Thank you.

I light-heartedly walked into Starbucks for my morning bacon gouda breakfast sandwich and grande extra-hot, non-fat, 3 pump, no whip stirred Mocha (yes, I’ve become one of those people.)  The day felt short as Allistaire was already incredibly tired at 11 am.  By 11:30 I was carrying her back to her room, nearly asleep in my arms.  Our nurse confirmed what I had heard from another mom about increased fatigue when counts come up.  After getting Allistaire settled in for bed I asked that I be called on my cell phone when they doctors came by for rounds.  Today’s rounds were not ones I wanted to miss.  We weren’t expecting results back until later this afternoon but I had some pressing questions about the possibility of going home and how I might need to prepare.  A friend of mine had mentioned serious cleaning and carpet cleaning of her home before her little man returned.  I wondered if I needed to prep our house for Allistaire’s impending return.

On a whim I decided to see if Olivier had an opening today for a massage.  Indeed he did and within minutes I was getting my neck and shoulder muscles worked on while we chatted about Olivier’s adventures sailing across the Atlantic in high seas – waves 40-50 feet at times.  My phone rang and I disregarded it.  I must have been lulled by loosened muscles and tales of danger for when I was done I immediately realized that it might have been the nurse calling me to say they were ready for rounds.  I rushed down the elevator and through the double doors just in time to see the doctors about to walk in their office.  They were quick to affirm that they did not have results yet, however, the pathologist thought they would be able to have preliminary results by this afternoon.  The fact that the pathologist believed this was possible encouraged our doctor, Dr. Jessica Pollard, AML guru, that this was a good sign.  She believed that the ability to get a good sample probably indicated a reduction in the fibrosis.  By the way, I keep referring to fibrosis but I don’t know that I’ve ever attempted to explain it.  From what I’ve been told, the cancer cells not only duplicate themselves endlessly, but they also have proteins on their surfaces that produce secretions that in turn produce threads of collagen that create a sticky web like structure in the marrow.  This fibrosis is believed to be largely responsible for the empty nature of the marrow when it was first tested.  More about this shortly.

Elated that I didn’t have to figure out how to get my carpets cleaned in the next 24 hours, I only allowed the bit of hopeful news to linger at the edges of my consciousness.  I sat at the computer and typed, trying to get into words more of my experiences in this strange world that are being used to shape me.  I looked up at the clock over and over.  By 3:45 I figured I could not possibly  concentrate any longer and decided to succumb to the mind-numbing delight of a chocolate old-fashioned doughnut at Starbucks, my second home here. In the elevator my phone rang with the nurse’s number showing up in bold white numbers.  With great trepidation I answered.  Our nurse Emily wanted to let me know she was going to give Allistaire some sort of medicine that helps prevent RSV (a respiratory virus common in young children.)  She just didn’t want to give it to her without me knowing first she said.  Of course, of course, that’s fine I respond; my lower back muscles now absolutely ringing with a tingling nervousness of anticipation, hope and fear.  I had just sat down with my doughnut and ice water when the phone rang again.  Same number.  Same nurse.  “They’re ready to meet with you about Allistaire’s treatment plan,” she says.  My second concise prayer of the day.  Help me God.  Help me God.  Help me God.

I get up to the SCCA Unit and see the doctors down the hall waiting outside our room.  Allistaire was awake so I beckoned them to come to me so that my sweet one wouldn’t see me and insist on my attention.  Right now I needed to give all my focus to whatever words they had to speak to me.  We went to the brown room.  The same little ugly room we sat in as a family just after we learned that Allistaire had AML.  This is the same room in which Sten and I usually eat our dinner together after Allistaire goes to sleep and sometime watch a movie on Netflix.  In this same wee brown room I was about to hear what only the miraculous inventions of science could tell me.

Sten was on phone on speaker as Dr. Pollard began.  These are the results of the tests they are able to complete here in the hospital.  The test is a good test here but not the best.  For the best, the sample was sent out by FedEx where an even more sensitive Flow Cytometry test is performed by one of the best pathologists in the world.  In that place, wherever it is, they are able to use more proteins on the cell to more precisely count the number of each type of cell in the sample. Because of the lovely snow, the sample was delayed in arriving but they believe it should get there by morning and the final conclusive tests completed by tomorrow afternoon.  Here at Seattle Children’s hospital they were able to use their Flow Cytometry test to look at the aspirate (the bloody core of the marrow.)  When this test was first done on an aspirate of Allistaire’s marrow on December 8th, 2011, no cancer cells were located in the marrow.  They were only found in the biopsy.  Today, January 18th, 2012, they did not find any cancer cells in the marrow.  When Dr. Pollard said this I was unclear how this was helpful or a good sign since it seemed to me to be the same results as before.  However, there is a very big difference between this aspirate and the first aspirate.  The first time they didn’t find any cancer cells but that was in part because the marrow was nearly empty; empty of all sorts of cells, good and bad.  Today’s test revealed an aspirate sample full of cells the way marrow is supposed to be, yet with the complete absence of cancer cells.  Dr. Pollard believes that the ability to not only get a good sample but a good sample that shows no leukemia cells is a very positive sign and she is very hopeful that Allistaire is in remission.  However, we must wait until tomorrow for the more precise test results.  Apparently, I misunderstood that the threshold of remission is considered 5% of less blasts.  This was the old parameter when pathologists were only able to rely on the morphology: what they could see under the microscope.  Now with the Flow cytometry test they can detect one individual cell in a thousand or down to .001%.  The newer, more accurate threshold for remission is .1%.  Part of me hates hearing this revised number.  Point one percent seems like an absurdly low number and like a far more challenging goal than 5%.  Apparently, though, they have learned that anything over .1% still poses a high enough risk for the cancer returning/relapse, that if Allistaire is over this threshold, she will likely have to have a bone marrow transplant.

Do not worry about tomorrow for it already has enough trouble it.  Today I will take the delicious news that I long to run over and over in my mind.  Today I take joy that my beloved little Allistaire has far less cancer cells in her body than she did a month ago.  I take exultant joy that her reality is not what I most feared – that the cancer would not only be reduced but would have grown.  At the same time, I wait with held breath for tomorrow and the more conclusive results.

We were told we could go home today if we wanted or we could stay and wait for the results.  We decided that we’d prefer to wait for the results and hear them and discuss them in person.  And of course, it’ll be nice for Sten to go home tonight and turn on the heat so we can return to a comfortable home.  I’ll have to double-check but I think we’ve been here for 40 days.  It is the strangest thing to know that tomorrow night at this time I will be walking barefoot on carpet to get into my own bed.  I will lay down next to my sweet husband and know that Allistaire is still just feet from me, but on the other side of the wall, in her own room, in her own crib.  Tonight she was not hooked up to the IV and tomorrow night no one will even know what her blood pressure is.

Strangely like the disorientation of hearing your child has cancer is the experience of being told that they might be well.  Tonight I thank God for all that He has accomplished.  I thank Him for the ways He has creatively used destruction to bring about life.  I thank Him for the stories and the faces that have become my home and my odd family.  I thank Him for His mercy on us.  We may still have a long hard road, but this afternoon He has lightened our load.  Thanks be to God.

Beautiful Biopsy


Thank you for all of you who prayed for Allistaire’s bone marrow test today.  The nurse practitioner who did the bone marrow aspirate and biopsy was quite pleased with the biopsy samples she was able to get.  She actually referred to them as “beautiful.”  I asked her what she meant by “beautiful,” and she said that she could feel the fibrosis and possible scar tissue and then was able to find a “sweet spot” where the needle pulled back easily.  The color in the biopsies also showed that the samples she got likely contain the needed components.  She is hopeful that the samples will be sufficient for the pathology tests.  Preliminary results may be available tomorrow if they are able to get results from the aspirate (this is the juicy bloody portion of the marrow).  In the previous two bone marrow tests they were not able to find any cancer cells in the aspirate, perhaps because of the fibrosis.  Results from the biopsy will probably take 2 – 3 days.  My understanding is that once we get results the doctors will discuss with us what are the next steps.  Hopefully from there we will be able to go home for a few days.

Allistaire is doing wonderfully.  After she woke up from the anesthesia, she was quite loopy as in each previous time.  This 30-45 minutes is a bit challenging as she is totally unsure of what she wants and appears tired but doesn’t want to sleep, seems to want to be held but rejects your arms, asks for food but then turns away from every offer.  Thankfully this is short-lived and within an hour she was back riding bikes around the Unit with Piper.  Again, please pray that tonight we would be aware if she is in pain so we can provide for her accordingly.

At Last…Bone Marrow Test at 2:40pm TODAY!


“Put a sticky note on the bathroom door with her ANC,” I asked the nurse last night.  Labs are drawn every morning at 4 am and they usually only take a few hours to get back.  I woke up at 6 am looking in the dark for the sticky note – there it was in black sharpie: 170.  I knew this would probably mean the bone marrow test would be cancelled for the day.  At 8 am our sweet nurse, Lysen, confirmed that it had been cancelled.  By 9:30 am I was told that the test was scheduled for 2:40 this afternoon and that it would have been earlier if she hadn’t eaten.  Drat!  This was frustrating, confusing and concerning.  I didn’t understand why they would cancel the test and then reschedule all in the course of a few hours – what had transpired to bring about these decisions?  Once again, you try to go about the ordinary tasks of the day to make it through the minutes until there might be answers.  Just get her diaper changed.  Put on her clothes.  Now come the shoes.  Distract her so she doesn’t see the sippy cup and keep asking for milk which she can’t have.  Unwind the IV lines. Walk down the hall.  Pick out a bike.  Make a loop around the unit.  Make another loop.  Mundane task after mundane task just to hold in the fear.  We want to know how Allistaire is doing but it is like willfully making yourself walk into a dark tunnel, not knowing what’s on the other side.

While I did talk to the doctors during rounds, I’m still not totally sure I understand.  This is the best I can do to make sense of things.  The bone marrow test must take place within the time span of between the 28th and 35th day from the start of chemo.  Last Wednesday was the 28th day and tomorrow is the 35th day.  They want the blood counts to be up high enough so that there is something for them to actually look at when they test it, however, they must also have time parameters because blood counts are constantly changing and they need to have some standard against which to test things.  I’m sure it is more complicated and nuanced than this and thus above my head.  They decided that because her ANC has been close to 200 three times (175, 174, 170) and because tomorrow is the 35th day they are going to go ahead and do the test today.  I asked them several times to be honest with me if they have any concerns.  They say no, they do not have concerns, and they say they have no way of knowing if there are concerns without looking in the marrow.  So all of this to say, it seems that Allistaire’s counts and the bouncing around of the ANC is normal but at the same time they need to do the test within this particular time frame.  The little girl down the hall who also has AML started her chemo two weeks later than us and has already had her ANC start to come up a tiny bit.  I guess everyone is just different.  Also, as some means of encouragement, the intern doctor said that Allistaire’s platelets are “gorgeous.”

Please pray for Allistaire while she is under for her test.  Pray especially that they are able to get good and sufficient samples of her marrow as they has been a major challenge the previous two times.  Pray that she won’t be in too much pain and that we will know if she is so we can give her more meds.  Please pray for Sten and I, pray for all of us whose hearts are bound tight to Allistaire that God would uphold us regardless of what news we get.  Preliminary results could come tomorrow afternoon but if they have challenges with the sample as before, it would be another day or two.  Regardless, complete results will probably be about 3 days away.

Here are some fun pictures from our morning.  We’ve had the delight of snow the last few days and have enjoyed gazing out the window at its repetitive, lulling, peaceful beauty.  You will also get to see some  neighbors of our’s on the Unit who have become cherished friends.  Little Rowan is the 9 month old baby boy in the stroller with his mom Meagan.  Piper is our 7-year-old neighbor and AML pal.  Allistaire said Piper for the first time today.  Lastly, you will see Waldo on the new construction portion of the hospital.  He moves around each day and the kids get some sort of prize for finding him.  Today we had the fortune of seeing him up close.

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“It is the greatest of all mistakes to do nothing because you can only do little – do what you can” Sydney Smith


I stripped Allistaire down to get her ready for a bath.  The water ran in the bathtub and Allistaire stood outside the tub showing off her fantastic curves, of which there are many.  As I sat there admiring her rotund glory, it dawned on me that she kind of looked like the color of a macaroni noodle.  That’s strange I thought.  Lately I had also noticed that her lips looked gray when I would put her in her carseat.  It’s probably just the tinted window.  Over and over I was able to explain away what I was seeing.  A day later, however, the older women folk who care for the kids at the Bible Study I attend, agreed that she looked yellow and had actually thought so the week before.  Emboldened by this affirmation, I determined to get Allistaire into the doctor.  Her pediatrician took one look at Allistaire and said she was incredibly anemic.  Within 10 minutes I first heard the word Leukemia uttered in connection to my child.

Two or three days, that’s how long Allistaire would have lived without getting a transfusion of blood.  I asked Dr. Johnson, how long would Allistaire be able to live with a hematocrit (red blood cell count) of 9 without getting more blood.  When she said 2 or 3 days I was horrified.  “What if I hadn’t brought her in,” I asked with terror.  “Oh, you would have brought her in, she would have gotten worse,” was the response.  Allistaire was living with only 25% of the red blood cells she needed.  Her heart was strained, pumping so hard and fast to get the little bit of blood to circulate throughout her body.  That first little package of blood took 4 hours to be transfused into her so as to not overwhelm her heart.  They told us that the blood would perk her up.  At 3 in the morning we were shocked to witness a giddy, playful, happy little Allistaire standing and talking in her crib.  Only hours earlier her expression was flat, her thumb never left her mouth and all she wanted to do was to be held and sleep if possible.  It was as though someone had pushed a button and brought her from death to life.  Only days ago did I learn how literally this was true.

Since that first little “pedi pack” of blood, Allistaire has had 12 additional packs of blood and 3 transfusions of platelets.  Allistaire could die from cancer, but she most assuredly would have died without getting more blood.  She has no shot of being cured from cancer without having her life sustained and supported by additional blood in the mean time.  You might have an idea of where this is going.  Yes, I’m asking you to seriously consider donating blood.  No, I’m asking you to donate blood.  We may know in our minds that when we donate blood is it helps someone else.  Here’s the deal, Allistaire IS actually alive because someone donated blood.  This is not some abstract concept, so don’t let it be an abstraction.  Are you a mom?  Look at your child’s face and imagine that you have the ability to save your child’s life by giving a tiny bit of yours away – a tiny bit that you can get back.  Are you a grandma?  Look at your grandchild.  Are you a husband?  Look at your wife.  Are you a friend?  Are you a co-worker?  Look at the faces of those around you and know, that though it might not be their flesh that your blood will sustain, the person whose life is sustained by your blood is just as real and precious as they are.  You and I are probably not the folks who will find the cure for cancer.  Such a quest is utterly daunting and we think, what in the world can we do about cancer?  It is easy to feel defeated and become cynical.  Yet here is this wondrous way that we actually all have a magical substance that can save a life.  What is the cost to you?  Absurdly little.  It will cost you about 45 minutes of your time and the tiniest bit of pain – all that in exchange for Allistaire staying alive.  In my estimation, that is a worthy trade-off.

Contact Puget Sound Blood Center to learn more about donating blood and to set up a time to donate.

If you live outside of the Puget Sound area, take a few minutes and track down where you can donate blood in your area.

Here’s the update on Allistaire:  She continues to do great and bring joy to everyone on the unit with her silly eyes, jovial spinning sessions, bike riding antics and unending sweetness.  Her ANC (Absolute Neutrophil Count) is tauntingly bouncing around.  Yesterday it was 174 and today it is 50.  She needs to have an ANC of 200 to be ready to have her bone marrow test and be released from the hospital for a few days.  As far as I know, the test is still scheduled for tomorrow afternoon.

Solveig’s fever seems to have passed, and while she continues to need a nap each day, her spirit is joyful.  We are still trying to wait and see what will happen with Allistaire and make sure Solveig fully recovers before we decide exactly when I should head to Montana to visit.

Just got me some blood - Yeeha! (December 2, 2011)