Monthly Archives: January 2012

Exploding Adrenal Glands

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I went to bed way too late and got up early this morning in preparation for Allistaire’s bone marrow test that was scheduled for 9:30am.  On my way to the shower I asked the nurse if Allistaire’s labs had come back.  BLAST!  Her ANC had dropped to 74.  I knew this meant that they would likely cancel the procedure and reschedule for Tuesday.  When I returned, this was confirmed.  No test.  Gotta wait longer.  Ugh!

Last night, I went to wash up dishes from Sten and I eating some tasty baked Ziti (thanks Kaitlyn and Tracie).  I once again got caught up talking to one of the parents in the kitchenette.  This dad has been here with his 9 year old son since June.  His son also has AML and has FLT3.  He had his transplant in September and has had an insane ride.  His dad told me all about the saga, the tongue so swollen that the end sloughed off, the 108 degree fever that actually burned his skin, the scary virus after scary virus.  I asked him how does he do it – how does he survive.  His advice to me was this:  don’t get too happy, don’t get too upset, find a good middle ground.  When he said this my brain accepted it as a reasonable idea.

This morning when the test was cancelled and I felt the tug to be upset about it I remembered this dad’s words.  I think he’s right.  Things just change constantly here, it is the norm.  Every day we test so many precise little things going on inside our child’s body – their temperature, blood pressure, weight, hematocrit, white blood cell count, platelet count, how much phosphorus, how much calcium, etc.  These numbers are important, but like a lot of things in this world, there is constant fluctuation.  To use the words of my dear friend Kirsten who visited this morning, “if you ride every high and every low, your adrenal glands will just explode.”  (Kirsten is a neonatal nurse at Swedish by the way and I take her at her word 🙂 )  As one who is by nature a planner, this sort of world is not at all conducive to the way I want things to go.  But wouldn’t it be amazing if on the other side of all this someone might actually describe me as “easy going.”  Anyone who knows me would never use this descriptor for me.  It makes me laugh out loud just to imagine.  But really, it would be wonderful.

Thanks to those of you who have prayed for Solveig.  She still has a slight fever but her cough is better and her cheeriness is returning.  Tonight we used Skype to talk with Solveig on JoMarie’s (Sten’s mom) computer.  Even though there is terrible lag time and the picture isn’t the clearest, it was so fun to see Solveig’s sweet silly face and see all her expressions.  She and Allistaire laughed at each other.  It was great to be together as a family of four, if even in this very limited way.

Crack

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Desperate to get out, to find a place to be alone.  Think – which set of elevators, which hall, where can I go?  Allistaire is asleep in her room and I cannot possibly stay on the Unit; too many familiar faces, knowing eyes, empathy that invites you to let go and I just can’t.  I just need to be alone.  Even the bathrooms open into the busy hallway of the Unit.  A few inches of distance with a gap around the door letting in the light – the bathroom is not an option.  I walk hurriedly with eyes cast down so the red and swimming blue won’t be seen.  I know what it’s like when you see another parent with that look on their faces, it makes it harder for you to maintain your composure, to act like everything is okay.  Because just below the surface is that great immense depth of sorrow that you will be cast back into.

What’s the big deal.  Today is just another day really.  Allistaire is fine.  She’s doing great really.  But I know it doesn’t ultimately mean anything.  It doesn’t declare what’s going on inside her flesh.  This morning I had to change her dressing with the support and oversight of the Home Care Services folks.  Austin, one of the Child Life Specialists, was on hand to help distract Allistaire with the iPad. I went slowly from one step to another, preparing the surface, washing my hands for 30 seconds, putting on Purell, putting on the non-sterile gloves, unwrapping the sterile package and removing the package of sterile gloves.  Everything was ready and we laid Allistiare in the crib on the blanket straight from the warmer.  The peace only lasted a moment.  As soon as I began to remove the dressing, she began to cry.  They held both of her arms down, while another nurse held her head away from where I was working.  Allistaire screamed loud and screamed silent, back arching in fear.  I worked with trembling hands, heat moving up my neck.  Once I had the old dressing off it was time to put on the sterile gloves.  It took me three pairs to get them on right without contaminating one of the gloves in the process.  All the while they hold her down because she is now exposed and they can’t risk her grabbing at her lines.  I begin cleaning the area with 3 special swabs, 10 seconds each.  It’s cold and smells scary of chemicals.  Each swab begins with dabbing gently around where the line comes out of her chest- this tender place with black foreign stitches.  We stand there and wait while her skin dries and Allistaire writhes. I place the new bio-patch around the line and begin a different type of swab that creates a microscopic film on her skin so that the next time we remove the dressing it will rip the film and not her skin.  Just as I’m almost done with this, I accidentally touch the tip of the swab on the nurse’ finger where she firmly holds Allistaire’s jaw away from her chest and I continue to swab for a brief fraction of a second before I realize what I’ve done.  I’ve contaminated the area where the new dressing was about to go and I have to start all over.  I can feel the tears rising, threatening to overwhelm.  I must get through this.  I go again through each step and at last the dressing is placed and I gather Allistaire in my arms.  She folds into me and tucks her head in the safe place between my neck and shoulder.  I hold her and hold her and cry and cry.  Everyone moves around me.  Throwing away the packages, washing hands, gathering their things.  I stand in the midst holding my precious one, the immense saddness welling up and over, flooding down all around me.

Somehow this changing of her dressing, the holding her down, the arching of her back and relentless cries, well, they are really the only and, therefore, the very tangible, expression of Allistaire’s own pain and fear.  The rest of her time and days are spent doing pretty normal things; things that at least have become normal.  The look of terror in her eyes as they look into my eyes, is like the icy tip of the iceberg exposing the vast reality below.  Not long later we were out walking the halls as Allistaire rode her most recent favorite scooter and rocket ship.  Allistaire was mostly back to her cheery self but my sadness lay just below, constantly like water, looking for a crack through which to flow unhindered.  We rounded a corner and the intercom declared “Code Blue;” the red light was on over the bathroom door and the staff came running from all directions.  We kept moving to get out of the way.  I watched their strained faces flash by as they willed their bodies to respond with rushing speed.  It was a false alarm.  The person was okay.  Yet the crack was found and I felt the tremendous pressure of the wild sorrow demanding to be released.  What am I doing here in a place where death is ever at the door?  This is not a place where we have a cheerful, colorful room with floor to ceiling windows.  This is not a place where Allistaire giggles and makes “silly eyes,” and plays endlessly on the bikes and is declared the cutest little one over and over.  This is not the place where I have packages delivered and I heat up food for dinner.  This is a place where death is the foe.  We are not fighting sickness.  We are fighting death.  Death, wretched death.  I am fighting someone who stands guard in the corner of the room demanding over and over to take Allistaire away from me; to steal her away so that I will never hold her again.  But she’s dear to me I scream.  Can’t you see how much I love her?  Don’t you know how long I longed for her?  I had a miscarriage between Solveig and Allistaire and for months I fought the fear and sadness of what it might mean to not have another child.  Having Solveig in our life showed us the joy and wonder it is to experience another little life, to add life to life and I could not imagine for our own sake and for Solveig’s, having an only child.  I prayed so much for another child.  I found out I was pregnant with Allistaire the day I would have been due with the other baby.  Around the time Allistaire was one, I realized that if that other baby had lived I wouldn’t have Allistaire.  I would have another child.  And I thanked God for this little beautiful one.  No matter how much love I have for Allistaire, it has no capacity to hold her to me.  My love for her cannot prevent death from prying her from my hands.  And I hate this, it is a ripping, stinging, sharp and deep pain.  I know everything probably feels amplified right now because her bone marrow draw is schedule for tomorrow morning.  It feels like the course of my life is hanging there on the tip of the sharp tiny point of the results of that test.

Allistaire’s ANC is up to 175 today which means it could very possibly be up to or over 200 tomorrow.  The doctors told me they will have to have test results back before they would let us go home, if they let us go home.  If she’s in remission (less than 5% blasts), we can go home for a few days.  If she’s not, we’ll have to discuss things they said.

I’m sitting in the Family Resource center in the most private chair that I can find.  To my left out the window, over the treed hill of University District, I see the snowy, jagged ridge of the top of the Brothers (in the Olympic Mountains).  I don’t have words for a prayer.  I sit slumped in this generic chair in an ordinary room.  Ola Podrida plays again on my iPod.  The thin red line telling me the battery will run out at any moment.  My favorite song is on and I know that in moments I will hear that liquid light, that yellow sheer sound I love.  This morning while Allistaire ate her breakfast she watched one of her Christmas Veggie Tales videos.  I wasn’t paying attention as I cleaned up the room.  “And unto you a savior is born.”  Those were the words I heard.  I need saving.  I am ever on the verge of going down and I cry out over and over, “Lord, catch me, I’m going down.”  Here His great arm reaches to me, grasps my forearm and lifts me.

Lest I leave you with only sadness, let me add this.  My face is aching and my eyes tired and puffy.  A headache has threatened all day.  This is why I try so hard not to cry.  I suffer all day for it.  What makes this all so strange is the way in which great joy and delight sits right along side sickness and possible death.  Yes, I’m weary from sadness but I keep having this sweet little face and breathy little voice, and wiggly little adorable body declare to me over and over, “Look Mommy, I’m alive, I’m alive and isn’t there just so much to rejoice in and delight in?”  So tonight I leave you with my first videos taken with my iPhone – no editing, just raw life with our little beloved Allistaire today.  (By the way, while the videos are vertical in my iPhoto, they’re showing up annoying and horizontal here.  Sorry, I’m still going to post them.  I’ll attempt to figure it out tomorrow.)  And thanks to Jenny and Leo for the beautiful little hat.  She was already dressed for the day.  The nurse delivered it right after the dressing change and how fabulous the way it matches!

Gold Medal

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And the Gold Medal goes to……Leesa!!!

I did not wake up one time last night.  I rose from consciousness of my own accord at 7:22 am.  I actually had to look at the clock three times to see if I had read it correctly.  That’s right, I slept 8 straight hours!  I literally could hardly believe it and it made want to go hug Leesa our nurse who managed to be the ultimate stealth Ninja.  Her strategy was to give Allistaire a sippy cup of milk while she was drawing labs at 4am.  I actually smiled my way out of the Unit to the shower this morning.

And as if this were not enough – Allistaire’s ANC went up to 46, after having dropped to zero again yesterday. Yeah Yeah Yeah!  And (yes, there will be a lot of “and”s in this post) Allistaire’s platelets are up to 176!!!!  To put that in perspective, she gets a transfusion of platelets when she drops to 10 which she has done several times in the last month.  To reach 176 feels like soaring into the blue black of space after living so long in a deep ravine.

AND it’s Sten’s birthday!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  I wanted to type out 31 exclamation points in joyful celebration of his 31 years.  The other day I was bemoaning the fact that I have no present for him and no fancy fun plans to celebrate his birthday.  His response was that, well, this is our reality right now and we don’t need to and can’t really make celebrating a priority.  In the moment I agreed, but then at some point as I was attempting to drift off to sleep last night I thought, NO, you know what, we are going to make birthdays an even bigger celebration in our lives because it IS a BIG DEAL that we have been given a whole additional year of LIFE!  That is absolutely worth celebrating and making a big deal out of.  So’s here’s where I wish I could say we have awesome plans tonight.  We don’t and that’ll be okay.  We’ll figure out how and when to do that in the next few weeks.  But still, give thanks for the day!  One more day to live life.  I sure feel redundant but I just know that this is part of the refining God wants to do in me – to jar me into realizing that there is SO much to be thankful for.  This morning as I was getting ready and doing my hair after my shower I noticed that after only 2 weeks of having my hair colored there was already the hint of grow-out.  My first response was to be bummed and frustrated but then I thought, THANK GOD I HAVE HAIR THAT GROWS!  Why am I using so many caps – I just feel like I have to find a way, I so want to learn how to look for the beauty, the wonder, the joy, the good, the true, the abundance that is constantly available to me but I can so easily disregard.  And right now, I am so thankful for my sweet, kind, handsome, smarty-pants, hard working, nature-loving, thoughtful, fun loving, strong, ample provider husband – Sten Karl and all 31 years the Lord has blessed him with!

I have to go because the nurse just called to say Allistaire is up from her nap.  Just one more thing.  Please continue to pray for Solveig who had a fever again this morning.  Thankfully she slept well but her temperature was 100.5.  This means I have to postpone my trip to visit her again.  We’re hoping I can go next Wednesday night through Sunday afternoon.

And we have LIFT OFF

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Not much too say today except that Allistaire’s ANC moved for the first time up from zero.  Today it was 30.  Who can know what it’ll do – the fellow actually said it could take as long as a month to get to 200.  I had no idea that was even possible.  I’m just so thankful we have motion!

Please also pray for Solveig.  I was hoping/planning to head to Bozeman in the next few days for a visit with her but she has a fever today and there’s no way I can intentionally expose myself to that sort of sickness and then possibly pass it on to Allistaire.  Pray that no one else in Sten’s family gets sick either.

We are constantly reminded that we cannot know what the future holds.  As I wiped the counter in Allistaire’s room tonight I thought, hmmm, Allistaire will likely have to tell any future love that she might not be able to have kids because she had cancer when she’s little.  She may have a heavy burden to carry that way.  Why this came to mind while wiping the counter I have no idea.  But there’s no use expending fear or worry over it.  Today we have Allistaire and so so much more.  It is so hard to live with all your ultimate hopes resting in some future time and place and be fully present to the moment as well.  Whatever comes, I pray God will have brought about a permanent change in me.  I hope I truly become a different sort of person, one who can dwell fully in the present and relish it while resting my long term hopes and needs in God.  Again and again in little ways that ultimately accumulate and amount to big ways, the Lord is offering me to live a life in which I rest the weighty things of this life in His hands and in so doing am freed up to more fully engage in and labor in the moment.

Waiting, waiting, waiting, waiting…

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I’m back at the hospital tonight after three nights away.  Wednesday I was taken down by a menacing headache that would not relent until yesterday afternoon.  In an attempt to combat the wretched pain I went home to sleep in my own bed Wednesday night.  I did everything I could think of to stop it – various medicines, heating pad, careful sleeping positions, caffeine, lots of water, cereal and milk – nothing even touched it.  Thursday I had the fortune of having made an appointment with the massage therapist who provides free 20 minute neck and shoulder massages to caregivers of patients. (I keep having to remind myself that nothing here is really free – I didn’t go to the store and buy the diapers and I didn’t hand over cash to the massage therapist but at $6,500 per night room fee, nothing here is free.  Yes, you read that right – we are billed $6,500 every night we’re here – crazy!!!).  But I do thank the Lord for whoever deemed it a good idea to employ a massage therapist because this mighty Belgian man was able to work my muscles such that my apparently out of place rib was prompted back into place.  As Thursday turned to evening I felt the pain subside.  Yet once again as I slept Thursday night at the hospital and awoke on Friday, the pain was back but had shifted to the other side of my body.  I have to say that fluorescent lights and beeping machines are a special form of torture.

Friday afternoon Sten and I had a scheduled appointment with the Home Care Services agency that provides all of the supplies we will need to care for Allistaire in the days that we get to be at home.  They also train us how to care for her; specifically how to keep her Hickman Catheter in good working condition by flushing both lines once each day and changing  the caps twice a week.  We began working on learning to change her dressing that covers and protects her Hickman Catheter as well.  For me everything about those 2 hours Friday afternoon was brutal.  The thee obnoxiously loud ticking clocks all in one room, the crushing beams of fluorescent light and most significantly what we were learning to do.  I told the nurse flat out I didn’t want to learn to change Allistaire’s dressing.  Everything about it overwhelms me.  It’s not really that it’s so hard it’s just the weight of the responsibility – Allistaire might not die from cancer – instead she could quite literally die from an infection in her line as I have heard of happening with several kids.  I can walk and carry five bags at a time, I know how to do fancy wire wrapping in jewelry making, I can play the piano, I can draw and paint – it’s not an issue of hand-eye coordination or fine motor skills – I’ve got these.  It’s the little innocent oops of a non-sterile part accidentally touching a sterile part and knowing that this could be the way an invader could enter Allistaire’s little defenseless body and take her down.  I don’t want that responsibility.  I doesn’t matter if I want it – it’s mine and the nurse made that clear.  So Sten and I practiced several times all the specific careful little steps to do our best to minimize the risk of infection.  Tomorrow we practice again and then give it a try on Allistaire.  I should point out that all our practicing takes place on Chester – the torso man who has a special little hole in his chest that allows you to compress the syringe and push the liquid through and into his line – he’s a good sport really.

After our class I was off to meet up with my friend Hanna for our 3rd annual tradition of traveling to and attending our church’s women’s retreat together.  I was reminded as I set out to meet her that Allistaire has made her presence quite known all three years of the women’s retreat.  The first year we were at a lodge near Snoqualmie Pass and it was a lovely and very snowy weekend.  To get to the lodge we had to create a narrow little path through the snow up the hill.  So narrow was the path that it really only accommodated travel in one direction.  At some point I was waiting on this wee path and someone needed to get by, I attempted to arch my back and make most of my body move out of the way of the oncommer.  Alas, with a great pregnant belly, my balance was totally off and I nearly made a “with-child” snow angel.  The second year I was pumping 5 times a day to provide Allistaire with needed breast milk and to keep up my supply.  This year her silent weighty presence went with me everywhere.  My raging headache continued unabated and when Saturday morning came with no relent I decided to stay in that  bed until the pain went away.  Thanks to Hanna’s natural sweet hearted nursing abilities, I was supplied with all I could ask for – orange juice and a tasty biscuit, cold cups of coke and most importantly – drugs.  Someone at the retreat had some fabulous sinus medication that at last knocked through the cycle of pain and brought me back to myself.  Though I was disappointed to have missed so much opportunity of getting to know and talking with ladies in our church which has been the best part of these retreats in previous years, I was thankful for getting out from under the oppression of that headache and for all the good quiet hours I had to talk with Hanna.  I realized too, that part of me felt the need to largely avoid most everyone else.  To not talk about the present reality of what’s going on in our life with Allistaire feels false and lacking authenticity, however, bringing it up over and over felt like a pity party waiting to happen and great vats of awkwardness.  Though it was not what I had looked forward to, it was in the end a good weekend under the circumstances.  While I was away, my sweet dad came to stay with Allistaire once again.  This gave Sten some time away alone and a chance to take a good long hard run – things he needs – to be outside, to exert himself and release some stress.  It was a blessing for both of us and it seemed when we returned that Dad and Allistaire had had a delightful time together.  Both a nurse and the front desk Unit Coordinator commented to me what a sweet dad I have and how he clearly does so well with Allistaire.  I love my Pops so much and I’m thankful for this special time he and Allistaire have had together.

Allistaire herself is doing remarkably well.  Her spirit and strength seem to be making great strides forward.  In the past several days she has started to squeal and shriek with delight, she actually rode the bike around and around and around the unit today and she is eating and drinking so much better. Her weight actually reached 12.5 kg on Saturday which is higher than it’s ever been since we came to this room exactly 30 days ago.  It is such a joy to see her vigorous little being bursting forth.  It seems these may be outward signs of the recovery that is taking place in her body.  On Thursday afternoon when I got the call from the Home Care Services folks about setting up an appointment for Friday I told them that it really wasn’t an ideal time and that since we’re going to be here a while longer I asked if we could push the training back to this coming week.  I was told that because we’re going home early this week that they really need to get the training in for us.  When she said those words about going home I was completely confused because no one had said anything about this to me and there was absolutely no indication that the time to leave was nearing as far as I knew.  After several conversations I was able to track down the source of this rumor.  Apparently on Thursday Allistaire’s monocyte count rose up from zero which can be an indicator that the ANC (Absolute Neutrophil Count) is not far behind.  On Friday, her monocyte count went back to zero but both yesterday and today it has begun to rise again.  While her ANC still remains at zero where it has been for the last 17 days, it is likely that we may soon see it rise above zero.  How long it will take to get to 200 is really unknown as some kid’s level rises steadily while for other kids their level goes up and down and up and down before it finally reaches that golden number.  So we wait some more.

We still don’t really know exactly what the days ahead will look like.  We don’t know when her ANC will get to 200.  The bone marrow draw may be scheduled for this Thursday, 1/12, but that is still uncertain.  We don’t know how long we’ll be at home but more than likely it’ll only be a few days.  This means we really don’t know when she’ll start her second round of chemo.  Of all the unknowns we find ourselves most awaiting the results of that all important bone marrow test.  It will determine a lot about the months ahead.  Please pray for us.  Please keep lifting us up.  Pray that the Lord will sustain us no matter what the results of this test.  It is one thing to learn that your child has cancer and that you have to disrupt your whole life to focus in on doing whatever it takes to save their life, but what if all the big guns have had no effect, or not enough of an impact to bring about the destruction of those insidious cells?  To me, walking day by day, closer and closer to that test feels like the scariest part so far.  On the Saturday morning that we carried Allistaire down the halls and into the room where she would get her CAT scan I felt as though I had a sense of what it would feel like to walk to your death.  In all those movie images of the criminal or the innocent walking to their execution, i felt my hair raise with tingling of feeling like we were possibly walking into a great suffocating blackness.  What if her body was full of tumors – what if the cancer was everywhere and there was really no chance to save her?  Praise God that wasn’t the case, but here we are again, putting one foot in front of the other, knowing that as the week begins and moves along, one day after another, we slowly move closer to that great unknown and possible terror.  We know that test is there, looming just out of the corner of our eye,  but we keep our eyes on our feet willing them to keep walking forward.  Please pray for Sten and I.  Pray for my mom and my dad, for my brother and sister-in-law, for Sten’s mom and dad, for his brothers and wives, for all of us whose daily lives know the joy of having Allistaire with us and the great swamping fear of sorrow that would come if she were taken from us.  We need you God.  I need you so bad to hold me up.  Every day that goes by that I’m here with Allistaire I love her more and more, I delight in her more and more, she becomes more and more knit into me and I don’t know how it would be if she were gone.  We know that though we absolutely love to see Allistaire’s singing glorious spirit, it does not tell us what is going on inside her flesh, and it only makes the pain of her possible loss so much greater.

Beloved Silly Sweet Cat Solveig

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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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2 Little Linked Lives

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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

Wiggle Bottom

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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!

Fresh Start

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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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