Thank you so much to all of you who have expressed love and concern for Solveig.  (Oh, by the way, for those that may not be familiar with Solveig, she is Allistaire’s sweet big sister – she’s our 5 year old joy!) Thank you too for your prayers for her during this time.  Being parted from Solveig is one of the many unexpected impacts of what is happening with Allistaire.  We are so blessed to have my family close by that has been able to help out with her.  We are also so thankful for Sten’s family who is all in Montana (Bozeman & Billings).  Solveig was quite disappointed that we had to cancel our family Christmas trip to Montana but Sten’s mom, JoMarie, was able to come out for a week and then bring her back to Bozeman.  Montana is a land dear to all of our family and while we miss Solveig immeasurably, we know we are blessed to have a loving family that is both willing and able and trustworthy to care for Solveig.  I think Solveig misses mom and dad and sissy, but I think you’ll agree from these pictures that it looks like she’s not having too rough of a time.

In these pics you get to see Solveig with Uncle Jens and her Aunt Jo, Jo’s sister, Annie who is a art teacher and Petyo, Jens & Jo’s dog.  Thank you Jo for taking all of these wonderful pictures for those of us who don’t get to take in Solveig’s lovely face in person.

Solveig  –  mom misses you so much!  I went to Target today while Allistaire was napping.  I so wished you could have been with me so we could get some popcorn and coke together.  Love you little sweets!

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Allistaire was born the beginning of March 2010.  Almost 3 weeks later little Jaron was born.  Jaron is the nephew of our dear friends Christy and Jeremy.  Christy’s brother, Brian, and sister-in-law, Monica learned at their 24 week prenatal check up that something was wrong with their baby, their fourth child.  After he was born, they learned that Jaron has a rare genetic disorder called Miller-Dieker Syndrome.  The following is an excerpt from Monica’s blog which describes Jaron’s condition:

“A condition characterized by a developmental defect of the brain (partial deletion of chromosome 17), known as lissencephaly…  These brain malformations cause severe intellectual and developmental disability, seizures, abnormal muscle stiffness and weak muscle tone, feeding difficulties, and distinct facial features (a.k.a.CUTE).  Common secondary medical issues include failure to thrive, feeding/swallowing difficulties, and respiratory complications.  Often a gastrointestinal tube is placed for feeding.  Pneumonia seems to be the leading cause of death and usually within the first few years of life.”

There were so many nights I got up to nurse Allistaire.  So many 1 and 4-in-the-mornings.  I would gaze down at the warm little wonder that was Allistaire and I would think of Jaron and Monica.  I prayed and prayed for them, my heart utterly aching knowing the joy I was experiencing with Allistaire and the great challenges and heart break that Monica and Brian had as their reality.  I heard through Christy about all the doctors appointments, all the unknowns.  When Allistaire started to smile and then coo and then roll over, eventually sit up, crawl and then walk, I knew how different was Jaron’s development.  In my heart, Allistaire and Jaron have been tied; two little lives both precious to the Lord but on such different paths.

The first day I posted to this blog, Monica was the first to comment that she was praying for us.  I cannot sufficiently convey what it means to me that a mom who has gone through what she has with her precious child the last 21 months says she will pray on our behalf.  Her words come from days and days and days of walking a hard road, but walking it with the Lord Jesus Christ.  I asked Monica if she would be willing to write out a prayer for us and she has given me permission to share it here with you.  There are so many of you who have said you would pray for us, and while it is not often possible for us to have you in our presence to hear your prayers, being able to read a prayer is the next best thing.  This is Monica’s prayer.  It comes from a heart that has experienced the particular road the Lord has placed her on.  We all have different experiences and places from which we’ve come, and these color our prayers.  I’d love to invite you to write us a prayer if you’re interested in sharing your words.  This is not the place for performance or the necessity of eloquence, just a way we can use this handy technology to pray together.

“Lord Jesus, Thank you for your love and care over each of us.  You KNOW us in ways we barely know ourselves.  You give us what we need, you teach us what you want us to learn.  I’m so thankful that there is always more to understand.  Help me to continue growing in ways only You can teach.  I pray Jai and Sten are growing and expanding in ways they never imagined.  Lord soften their hearts to Your Holy Word and Your gentle voice.  May they truly hear You speak.  At times like this, where we find ourselves in a place we never imagined and always dreaded, You are there.  Thank You, Jesus, You are HERE!  For reasons we may never completely understand, You have put us in a place of complete helplessness and we plead for Your help.  For when we are weak, then You are strong.  May Jai and Sten feel Your strong arms surrounding them, holding them up when they feel like the world is falling out from under them.  Give them courage, give them hope, give them peace that passes all understanding.  You are God of the universe, Creator of all things and You are our personal savior, right here with us.  Sometimes it feels like our circumstance is too much.  It’s so easy to feel like there is no hope, but Your Word says to wait for You, to put our trust in You.  That You will make all things work together for good for those who love You and are called according to Your purpose.  Often, we don’t want to be called to such a sacrifice of trusting You unconditionally.  It hurts.  But You understand our pain.  So we look forward, not to what is seen but to what is unseen.  Reality.  Even though it doesn’t seem real because we can’t see it.  You have promised, so we believe.  Ug, this is so hard.  God it hurts.  Help us to see. We want to have eyes to see and ears to hear, help our unbelief.  We hope for healing  and we wait for it patiently.  Thank you Father God that in our weakness, when we don’t even know what to pray, Your Spirit intercedes for us.  Thank you that our current suffering is beyond compare to the future glory that will be revealed in us.  You are good, and your love endures forever.  Nothing can separate us from your love.  When all feels so overwhelming, may Jai and Sten feel Your great Love!  Give Allistaire grace each day, to undergo the harsh treatment, to stay healthy, to bless every soul she encounters with her sweet spirit.  Use her precious young life to reach others.  Through her suffering, I pray You will mold hardened hearts into soft clay.  That everyone who encounters her life would be turned to You.  What a miracle that would be!  God, grant this family endurance through these hard days and long nights, a strong spirit that never gives up, wisdom for each decision, unity with each other in the midst of the pain, and a love that is of Jesus, sacrificial and all-encompassing.  Lord, You alone are good.  And Your love endures FOREVER!  Amen.”

Please include Jaron and his mom, Monica, his dad, Brian and his brother and sisters in your prayers.

If you’re interested in knowing more about little Jaron you can click here:  Monica’s and Brian’s baby boy Jaron

Though these are now a week and a half old, I wanted you to still have the opportunity to see some additional fun videos from Friday, 12/23/11.  Allistaire was having a great time with Grandma JoMarie’s fancy phone.  Though her hair is shorter now, her joy remains!

Haaken & Aunt Jai

Happy 2012 Everyone!

I’m so thankful for fresh starts.  Even though nothing actually happened that made yesterday any different from today, there is something  joyous about the fact that we can know that 2011 is behind us and that we can look forward with anticipation to what 2012 will bring.

Sten and I had the pure joy of ending 2011 with two of our most favorite people in the world, Sten’s brother Peder and our sister-in-law, Jessica.  We four were married only months apart, moved from California to Montana months apart and had our first child only months apart.  In so many ways we have shared a lot of our journey as adults together.  They are dear to us and we are thankful for all the time we got to spend with them.

Tonight I just leave you pictures from our fun New Years Eve dinner night out.  Many thanks to my mom who cared for Allistaire much of the weekend and spent Saturday night at the hospital.  We four spent a lovely 5 hours at dinner, enjoying good food, lots of laughs, and deep, challenging conversation.  After dinner we enjoyed viewing the fireworks display at the Seattle Space Needle from Sten’s office on the 34 floor balcony.

As for our sweet little lady Allistaire, she is doing so well and is constantly full of joy, being spazy and doing little tip-toe dances.  Her energy level is definitely less but thankfully we’ve streamlined things a bit at night to provide for more rest for all involved.  Also, we are thankful to report that Allistaire tested negative for both possible viruses.  Due to the possibility of a subcutaneous infection in her diaper area, they have added an additional antibiotic.  Allistaire continues to get red blood and platelets from time to time to support her body until her marrow starts producing on its own again.

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My husband is a climber.  He goes to the climbing gym and practices putting his body into all sorts of positions to move toward the point he’s trying to reach.  I too am a climber if you define a climber as one who climbs.  However, I did most of my climbing when I was a kid and it wasn’t in a gym; it was occasionally on rocks but most often in trees.  There was a very tall cedar tree in our backyard growing up that my brother and I would climb.  Climbing a cedar is tricky business because the branches slope down and the bark is naturally more smooth – add the inevitable rain and it’s quite slick.  There are two things I learned to do while climbing.  First, don’t look up too much because it always seemed that debris from the tree would get in my eyes.  Secondly, and most importantly, only move one of your body’s limbs at a time.  Always keep three of your limbs firmly attached to the tree while you move the fourth.  I think my grandpa may have actually taught me that.  I think it’s pretty sage advice.  As one who craves security I always followed this rule of thumb.

I find that this idea has become an unspoken mantra in my life.  I feel a need for safety and security that is unparalleled.  So much of what I do in life can be connected back to this need.  I want to minimize risk and maximize security.  I want everything securely in place before I ever have to step out and risk.  I want as much as possible to have all my bases covered.  My naturally analytic mind sees a thousand possibilities of what could be and I set out to deal with all potential hindrances to what I want to achieve.

Security of the sort I crave is a virtual impossibility here in the world of cancer.  I sit with muscles still tingling a bit from nervousness after meeting with one of Allistaire’s doctors to get some questions answered.  I thought my questions had simple clear answers, but nearly an hour later I was once again reminded, no, that is not the case.  There are thousands of possible different scenarios.  I was hoping to confirm some time frames of Allistaire’s treatment so I could let you all know what the next steps will look like.  What I learned was that day 28 is the magic number.  Day 28 is 28 days from Allistaire’s first day of chemo.  Today is day 16.  On or near day 28 Allistaire will have another bone marrow biopsy and aspirate to determine how her body responded to the chemo.  Everything that follows hinges on the results of this test.  Test results could take 2-4 days depending on which day of the week the test falls.  Allistaire’s baseline blasts level was 21%.  This means that 21% of her bone marrow are blasts, whereas normal healthy bone marrow would have 1-2% blasts.  The pathologist will also look at the blasts themselves to determine if they are normal blasts or cancerous blasts.  The test results fall into the categories of complete remission (CR) which would mean less than 5% blasts, partial response (PR), very good partial response (VGPR), and SD and PD (I don’t know what these last two stand for but are on the bad response end of the spectrum).  A bad response would mean that the chemo had no effect on the number of blasts or that they have actually increased.  If Allistaire is in complete remission with less than 5% blasts, then she will go on to the next round of chemo which will be 8 days long.  If the number of blasts is over 5% then she will need to get a bone marrow transplant.  The goal of successive rounds of chemo would then to be to reduce the number of blasts as much as possible in order to get her body in the best possible place to have a transplant.  If she were to have a bad response, she would likely come off of the clinical study and the doctors would need to strategize about what might be a more effective course of treatment for her.  I don’t know any details about what this would mean except I think it means that they might use different types of chemo at varying intensities along with a probable bone marrow transplant.  Regardless of the results of the bone marrow test, we would probably only have a few days at home before she would need to return to the hospital and be onto round number two.  At the end of the 8 days of round two we would be able to return home despite her ANC (Absolute Neutrophil Count) being zero.  If she were to develop a fever we would need to return to the hospital within an hour to have her started on antibiotics.  If this were to happen we would have to stay in the hospital until her ANC rises to 200.  Her ANC can stay at zero for 1-2 weeks once it hits zero which occurs toward the end of each round of chemo.  Once the ANC starts to rise it can take 1-2 weeks to reach to 200.  Her ANC must be 750 before she can begin the successive round of chemo.  Fortunately the time it takes to rise from 200 -750 is a much quicker pace than the beginning rise from zero to 200.

This road we’re on is not simple, it is not clear, it is so long, so very long.  Five months sounded long but I am learning from others on the unit who have been traveling a long time that it might be ever so much longer than we first knew.  Five months is really more the optimal time frame if everything goes well.  And even then, if at the end of five months you are sent home supposedly cancer free, you have to wait years to know if you really are in the clear.  I do not like this sort of predicament at all.  I want to see the goal laid out before me and know the path to get there.  I have been taught all my life the necessity of delaying gratification to achieve greater things rather than catering to one’s immediate desires.  I can do that, I’ve done that so many times.  This feels altogether different.  In this land in which I’m walking there actually are no roads or perhaps there are a thousand million roads so that having a road is of no help in determining which way to go.  I have no other choice but to take one step at a time whether that be one day at a time or a span of five minutes at a time.  This makes me feel absolutely out of control.  I hate being out of control.  I crave control because I want to determine what will be.  No amount of effort or desire on my part can actually DO anything about what’s happening in Allistaire’s body.

In the last 30 days since this all began, I periodically find myself wanting to dive into the details of how everything works and the numbers, those sacred numbers.  The numbers, the statistics have a powerful allure.  Numbers feel so solid, so reliable.  When one feels out of control you are frantic to find a solid place to plant your feet and numbers declare by their universal reality that they are a place to grab onto.  They declare themselves objective truth.  I find myself tossed in the dark cold waves over and over.  I see no land – anywhere -and I grow more and more frantic.  How long can I tread this water.  My strength wanes and my head starts to dip down into the water.  My fear is a frenzy in my mind and my hands lunge out over and over, desperate to grab on.  I sense in my gut that I’m going down.  I’m going down. I want to invite in the simplicity, the clearcuttedness of numbers as a solid place in which to stand.  The numbers might not necessarily look good but at least they are solid.  They are a land that might be inhabited by wild animals that also threaten my life, but at least they are land.  I look the numbers over, turning them over to examine this side and that.  So they say 50% of AML patients are cancer free with standard treatment after 5 years.  I contemplate the numbers.  I like their solidness but I still try to make them into the shape I want to see.  So they say that this particular sort of genetic changes makes the prognosis this percentage better or that percentage worse.  Okay, so I turn the numbers over and over.

As I’ve said before, what I’m really looking for is hope.  I’m wanting to find something that will offer me hope.  Hope is really a future form of security.  It is an acknowledgment that, yes, the road is hard and scary right now but I have confidence that in the end everything will be okay; everything will work out alright.  Hope is the handrail that get’s me to safety.  Hope is the space in-between the fear of demise and rest in the “rightness” of the future.  For myself, hope comes in the specific form of my faith.  The qualities and dimensions of my own hope are formed in my faith of who I believe Jesus Christ to be.  This faith absolutely directs the sort of hope I have.  Soon after beginning to attend our church I learned of a term that well describes this space and time of life in which we live.  This present life falls in-between “the already and the not yet.”  I live in a time of fulfilled promises and unfulfilled promises.  Christ has come into the world and by His death and resurrection, accomplished the end of the ultimate power of sin and death.  But we all know sin and death are still very much with us.  They no longer have to have ultimate power over us, but we still live in a world where they do exist and do have some power.  What is it that will enable me to keep walking?  What encourages me to go on; and not just to go, but to go without a fear that undoes me, disables me, stops me in my tracks or simply makes me miserable?  The Bible tells me that Christ has come to do away with my sin and thus rescue me from ultimate death which is eternal separation from God and that Christ will return again and redeem all things and set everything right.  I live in the middle of those promises.  But I am not left bereft in the middle of that wide open space.  There is yet another promise, and that is that God will sustain me in every single thing in my life great and small, He promises not to leave me or forsake me but to carry me.

I do not have the sort of security I yearn for in my humanness, the sort of security that comes from my own limited imagination, finite strength and wisdom.  No, I don’t have the sort of security I want that would come from hearing that kids with AML have a 90% survival rate.  That is the hope I want to grab hold of, but it is neither available to me or ultimately reliable anyway.  I am, however, offered a much less initially satisfying security.  I am invited to believe in something I cannot see with my eyes, I cannot hear with my ears, I cannot touch with my hands, but I am told is more real than anything I have known and is a security far greater than my greatest needs. Let’s say I weigh 150 pounds and I am offered a nylon climbing rope that can hold 5000 pounds.  I’d probably feel pretty secure.  What God is offering me is far beyond an offer of millions of ropes to hold me up.  Security is something I crave and yearn for in the very core of myself.  The sort of security God offers me in Christ is quite different in quality and dimension than the sort of security I am prone to seek out on my own.

This will be quick –

The doctors just came to do rounds.  They are keeping an eye on Allistaire’s diaper rash as this is a way in which she can get an infection.  They wanted to come by to examine her during her next diaper change.  The doctor told the nurse that there was a lot going on this morning and that she might not be able to come down immediately for the diaper change.

There are two new admits this morning.

One is an 8 month old with neuroblastoma with tumors all throughout the body.

One is a 12 month old.

There is another patient who is bleeding all throughout their body.

Please pray for them.  “Please pray for them” feels like an understatement but there is no font attention grabbing enough, nor large enough, nor a sufficient number of exclamation points to add.  No bright color will suffice.  Pray for them please.

When I hear this I am reminded that things could be very different and are for others.  For some pain and terror comes swiftly and knocks you off your feet.  I heard that during our wild wind storm on Christmas day, a family was driving on Whidbey Island and a tree fell on their car killing their 9 year old daughter and injuring the father.  In a flash their world is changed forever.

Our road appears to be a long one.  But you know what, as hard as a hard long road is, there is the gift of time with the ones we love in it.  Pray for those whose time is radically cut short.  My heart is so weighty for them – these unknown faces and lives whose physical bodies are in a room not far from us.

Ask God over and over to help you be thankful for what He has given you.  We’ve all heard it a thousand times – be thankful for what you have, but friends it really is an imperative.  Don’t just nonchalantly thank God for you blessings; search them out; look around corners and under the furniture; look inside and out.  Be rigorous about tracking them down.  There is no blessing too small to count, for once it is gone you realize how much good it was in your life.

Nearly every time I sit down in front of this computer to attempt to translate into words this life God has given me, I listen to the same album on my iPod.  I listen to it over and over.  Somehow it has become the background music to my life at the present.  It is music that helps me think.  There is one song in particular that I love more than all the rest.  It really isn’t even about the words.  I’m not exactly sure what the words are for that matter.  It is for one note; one note for which you have to wait just shy of three minutes. I play the song over and over sometimes just to hear that sound.  I anticipate all those two minutes and fifty seconds with growing eagerness, that beloved sound.  And when you reach that sound, that highest note in the whole song it is like slipping into liquid gold sunlight.  There you are standing with the full glory of the sun on your face.  One of the sights in life most beautiful and dear to me is that of an angry blue steel-gray sky behind and in the foreground you behold the late light of day slipping in under the clouds and absolutely illuminating, lighting up, exploding with beauty the trees nearer you.  There is something about that contrast of the color of imminent threatening danger with resplendent singing light the color of honey.  It is a clear fresh sort of light.  I fail in my attempt to describe it but if you’ve seen it you must know what I’m talking about.  That light is the color of this note.  I love this sound and it feels like a hand extending out to me, offering me hope.  It is a sound that tells me over and over – there is beauty.  There is beauty.  In the midst of the storm or in the midst of the ordinary, suddenly and unexpectedly there bursts into your reality this radiant light that in its wondrous beauty, simply silences the storm.  Whether the storm is actually silenced or it rages on and on and you just no longer notice it as you stand transfixed, I don’t know.  I just know the ferocity of the storm at my back makes the light on my face all the more invigorating.

Here’s the song if you’d like to take a listen: Ola Podrida: Run Off The Road

I’m pretty sure I got a glimpse last night of the sleep torture techniques they used in Guantanamo Bay.  Just as I felt my brain shutting down into the delightful state of unconsciousness I would be yanked back up into the confusion of how there could be possibly yet one more issue to attend to.  Vitals are at 8pm, 12am and 4am.  The IV pump must be flushed and Allistaire’s double-lumen Hickman catheter checked every two hours.  She get’s antinausea medicine every four hours and a round of antibiotics once in the night – both through her IV, however, once these are done going through the IV pump the IV will alarm to inform the nurse that it is finished.  If not attended to in a few minutes the volume goes up on the alarm which essentially feels like someone’s yelling in your face.  At home one diaper can last 12 hours – not so in the world of IV fluids constantly being pumped through your body and nurses who check it somewhere from every 2 to 4 hours.  And then of course, there is the little lady herself.  Let’s just say the miss-cranky-pants of a few days ago has disappeared and Allistaire has regained her giddiness.  From about 2:30 – 4:15 last night Allistaire was up, playing with the label on her arm bracelet she is required to wear.  She tears it off then gets upset that it’s off.  I put if back on, she takes it back off.  She was having a hard time falling to sleep and because she’s been eating so little I thought she might be hungry so I offer her the sippy cup of milk which she seems to be enjoying.  I go back to sleep.  Drifting away and then what?  Allistaire is running the sippy cup back and forth across the metal slats of the crib like she’s a prison inmate.  I go to her side and inform her as sternly as I can that it’s time for nigh-nigh.  She giggles and wants to play – who can resist?  I finally decide she’s just going to have to cry a little bit but nurses are sweet and well-trained and come running to see what’s wrong.  I know, I’m torturing you just telling  you all these details.  Needless to say, we’re both tired but we’re working on better communicating our needs and streamlining what needs to get done during the night.  We definitely appreciate your prayers on this subject!

As I mentioned, Allistaire’s little, silly, happy self has returned.  She is still more tired than before and has significantly diminished her race track laps around the unit.  Never-the-less, she is happy to play silly, coy games with all the nurses, doctors, social workers, etc. she encounters.  It really is joy upon joy to have her cheerful spirit returning.  Thankfully she has continued to be fever free (afebrile) since Monday and her blood cultures still have not grown anything.  Our latest concern is a fair amount of stinky poopers which could indicate a GI-tract bug she may have like Roto virus.  If they decide it necessary to test her stool and it comes back positive, she will be in isolation until she is completely free of sickness.  This could be a week or more.  Please pray that this doesn’t happen!  Isolation means she cannot leave her room and Sten and I cannot access our refrigerator food or the microwave on our own; the nurses would have to do all of this for us.  In addition, we would not be able to have any little people under 10 visit – this would be awful as our sweet nephew, Haaken, who is 5 1/2 is literally on his way as we speak driving with Sten’s brother, Peder, and our sister-in-law, Jess, from Montana to visit us.

Allistaire continues struggling to eat.  She is eating so little it is astonishing to me.  The doctors say this is totally common and to be expected with her counts so low.  We are supposed to keep track of what she eats so that the dietician can asses her nutritional needs and calorie intake, but good grief when you eat 5 cheerios, 6 wee tubes of macaroni and a chip – what can it amount to?

And so, on to the sad news.  The expected news.  Allistaire’s hair started to fall out today.  It’s on her clothes, her pillow, her hands (which means it gets stuck in her mouth because of sucking her thumb) and on her food.  She refused to eat more than a few bites of her cheese this morning.  I kept trying to get her to eat it.  When I finally relented and picked it up to throw away, I discovered it was covered in hair.  Hairy cheese?  Yeah, I’m with Allistaire – not too enticing.  I have to say it’s pretty sad.  Here is an outward sign that chemo really does kill stuff.  One of our sweet doctors encouraged me to just go ahead and cut it, to make it easier.  After Allistaire’s bath I took the scissors and cut off two locks.  Then Sten held her as I cut off most of the length.  Now we know what it would look like if we had a boy.  She really is such a cutey and tonight when I was putting her finally to sleep, I had to smile when I realized she looked like a blonde version of Sinead O’Connor which really is one of the most beautiful shorn women I can think of.

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Afebrile

What could it mean?  Morning after morning I’ve heard them say that Allistaire is afebrile.  It is a word it seems I should intuitively know but the options for it’s definition I come up with don’t seem to fit the situation.  I know the “a” part means “not” so I know she’s “not” something.  Not crazy?  Are they saying every morning Allistaire is “not crazy.”  No, this isn’t the psych ward.  Hmmm.  Not what? I kept meaning to look it up, but now I know, I finally caved and just asked the nurses, done with attempting to preserve an appearance of intellect.  So simple, it just means you don’t have a fever.  That didn’t seem too significant until now; now that she has been febrile.  I hang on the word, febrile or afebrile.

Yesterday I got to spend the day “out there” with the other crazy after-Christmas shoppers, trying to find some deals and battling the incredible traffic.  My sweet, sweet husband wanted to make sure I had a break from the hospital and spent the day with our little sweets.  Sunday night her fever spiked again and she was given more Tylenol.  Monday she remained quite non-energetic and spent lots of time just being held, which I pretty sure Sten didn’t mind.  She took a long afternoon nap and a short evening nap.  Thankfully she was afebrile, fever free, for the day.

Last night we had a lovely after hours visit from Uncle Bjorn, Aunt Jess and her parents, Mitch and Berna, her brother Austin and family friend Phillipe.  By 9pm though, Allistaire was down for the count.  We put her to bed and enjoyed eating pizza and starting a Netflix movie.  She woke up at 10:30 crying and upset and took a bit of time to settle back down.  Again at 1am and 1:30am she woke up crying and upset but very agitated and wanting to go back to sleep.  The nurse and I decided it would be best to try giving her some anti nausea medicine and benedryl combo.  It is so hard to tell what might be going on for her but apparently nausea, even now that the chemo is done, is quite common.  Thankfully she settled down for the night and has slept quietly since then.  At 2 am this morning they were scheduled to give her another round of antibiotics in her IV.  Thankfully, she has had no fever all night.  This is such an answer to prayer!  Please keep praying that she will be afebrile and hopefully regain some of her joy.

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The late afternoon yellow sun lights up the right side of my face as it lays horizontal across the land.  It is the milky warm yellow of a winter afternoon.  I keep having to remind myself that it is Christmas day.  Nothing resembles any previous Christmas of my life.  There is no giddiness, no anticipation, no biscuits, grits and tenderloin, just cold coming in from the open window of our bedroom and a silent house.  Sten and I woke up alone in the house.  The wind chimes were clanging outside with the joyous vigor of the wind storm that was upon us. With an empty fridge, we set out in search of somewhere open for breakfast.  The leaves swirled everywhere-along the road and high up in the air making I-5 unrecognizable, as though it were a little traveled country road.  We ended up in the lounge of a dark restaurant in order to avoid an even longer wait.  Now we are back at the hospital with Allistaire napping in her room.

The light reminds me of that Friday afternoon just over two weeks ago.  Unlike today when I drove to the hospital, on that day when I looked in the rear view mirror there were two little sweet faces, dancing and clapping in their car seats to one of our favorite songs-All God’s creatures got a place in the choir, some sing low, some sing high, some sing out loud on a telephone wire, some just clap their hands or paws, or anything they got now!  The liquid yellow lit up the trees on the eastern hillside, the clouds soft whites and pinks, and if you looked straight up you could see the perfect singing blue sky.  I turned up the volume on the stereo and repeated the song several times in affirmation that we were alive; a sort of defiance of the doctors words only two hours earlier telling me we needed to come to the hospital because they had found cancer cells in Allistaire’s bone marrow.

We went to the emergency room as instructed and were escorted directly to the SCCA unit and into our room.  In the low-lit darkness of our shared room I saw a small girl of 7, head bald, dark purple rings around her eyes, hooked up to many tubes connected to green lights and machines.  It was not long before I learned they had already been there for 17 weeks, since July and that they would not be done until March.  I screamed inside, “I’m not ready God, I’m not ready for this, I’m not ready to hand her over.”  We wondered why we had to be there given they only could do a few blood tests that night as the Cat Scan was not scheduled until the next morning.  We were given a four hour pass to go home.  We left at 6pm and had to return by 10pm.  Four hours.  When we got home I came in through the front door and sat on the carpet by the Christmas tree.  Solveig and Allistaire came in and out of the room, playing with each other.  I felt I could not move.  I didn’t want to eat, I just wanted to keep sitting there, watching them, seeing Allistaire’s little figure moving around our house.  I knew that when I moved my body from that spot we would be on to dinner and getting Solveig ready for bed and then, well then there was the unknown.  I didn’t know when I would see Allistaire again in our house.   The pictures above I took sitting there on the carpet, not wanting the progression of time.  This was the extent of our family Christmas.  Since that day the decorations have only felt mocking, not cheery.

Today we celebrate Christmas, the birth of Jesus Christ; the day the God of all creation became incarnate.  The God of the heavens and the earth came down to dwell with us.  Today did not feel like Christmas.  All the sparkling glitter, the unnatural blue glow of LED lights, the cheery fat snowmen, the advent wreath and songs, the tree bedecked with ornaments, the absurd quanitites of cookies and treats all feel as though they belong to another world all together.  In fact I feel done with them.  I want to pack it all away.  I’m over Christmas.  But I have known the incarnation.  There is the little nativity set that sits on the round table beside the couch every year.  It can feel trite.  But look there, that tiny little figure in the middle, that is the one that reminds me that God came down to dwell with man.  When I drove the car to the hospital trying to focus my attention on the life that still perservered, when I walked in that room and wanted to turn around and run, when I sat on the floor by the tree unable and unwilling to move, each night as I pull out the chair and make it into my bed, each morning I select Allstaire’s clothes for the day and make the bed back into a chair, each lap around the unit, each time I walk in and out those automatic doors, each day I acclimate a little more to sickness and the possibility of death, each time I come home to our house alone He is beside me.  It is not the sort of Christmas I wanted but it is the Christmas I have most know that I am not alone in this life; that there, just to the side of me is Jesus.  These are hard words to write because they seem so insufficient, so dismissable.  I have known the presence of Christ, not far off, but near.  I’ll be honest, I’m tired now as it’s past 11 pm and I feel unable to begin to unpack the vastness, the weightiness, the wondrousness of the reality that I can make such a claim as to know that I am not alone, but am day after day in the actual company of Christ.

Here’s the update on the rest of our strange Christmas day.  This morning marked the last chemotherapy Allistaire will have for her first round.  On Friday, her ANC (Absolute Neutrophil Count) hit zero.  This is exactly what the doctors would expect as the chemo takes effect.  Her ANC can stay at zero for 1-2 weeks.  Her red blood cells and platelets continue to drop as well.  For this reason Allistaire had two transfusions of red blood cells this morning and her first transfusion of platelets.  She was quite fussy and tired this afternoon and slept for a few hours.  Because of the blood she received we expected she would be energized and in a chipper mood.  However, even when she woke up she was still fussy and seemed warm.  She was very uninterested in food today and only did a couple laps on the bike.  Her blood pressure was a bit higher than normal and her temperature began to rise.  Once this happens the nurses check it every five minutes or so.  Eventually, her temperature reached the point to be considered a fever.  The doctors are quick to address any possible illness.  At the first sign of fever they take blood cultures, start an IV of antibiotics and give her Tylenol to reduce the fever.  She was fairly unhappy this evening and wanted to held quite a bit.  We put her down around 8:30 for the night.

Because Allistaire’s immune system is essentially non-existent at this time she is very suseptable to infection and illness.  This evening was the first time she has actually acted sick.  Please pray that God will protect her from harm and the doctors will be successful in determing what’s going on if anything and will know how best to treat it.  This sort of situation is common and to be expected, but scary none-the-less and hard to see her feeling so crummy.  Allistaire has such a generally cheerful spirit and it was clear today that she was not herself.