I failed to share with you the great news about little Caden, who’s battling Neuroblastoma.  I relayed the fact that he received experimental MIBG radiation in San Fransisco and was waiting for scans the week after Thanksgiving to see how well he responded to the treatment.  The joyous news is that it worked really well and resulted in a significant reduction of the neuroblastoma cells.  Apparently they give a score that indicates prevalence of the disease.  I don’t know what the scale is but he started at 26 and after about 5 months of chemo he was down to a score of 20, which concerned the doctors that the cancer was not yet enough under control for Caden to undergo a stem cell transplant, which is a key component of his treatment.  Thus he underwent the MIBG radiation.  The most recent scans at the end of November showed that while the cancer is still there, it is down to a score of 4.  For Caden to move forward with transplant he needed a score of 5 or less, so they were ecstatic to be able to move forward with his transplant.

The transplant was scheduled for the 19th of December, but as of last night it is on hold.  In a moment, everything has changed.  Caden is fighting a cold which to most of us would be nothing, but to a body with an already compromised immune system and heading into a week of of “conditioning” in which Caden would be getting radiation and chemo that would annihilate what’s left of his immune system, this wee cold, could literally be the death of him.  Apparently, this particular cold virus is also hard to get rid of.  Every day that transplant is delayed is a day without an assault on the neuroblastoma, an unguarded day.  Friends, my heart is just so heavy for my friends Pam and Jason.  It feels feeble to ask for prayer on their behalf because of how insufficient it feels – there is nothing visibly accomplished.  But I cannot call into question the how of prayer works every time – I am told to pray, in all things, with thanksgiving.  Thank you Father for how far you have brought Caden and his family.  Thank you for all the ways you have protected him thus far and we ask that you would swiftly bring about the end of this cold.  You know this virus, you see it, in all it’s detail, you know it utterly and you are able to destroy.  That is what I ask for – I ask for more mercy, more grace, more demonstrations of your power to overcome death and for comfort by your Spirit for Pam and Jason.

I am going to copy in Jason’s update from late last night, actually from the wee hours of this morning:

Thursday December 13, 2012                Day 262

I really don’t even know where to start this evening………………….

Our morning started out as usual with Caden being a crazy kid chasing his sister up and down the camper.  He made sure to jump on my bed a few extra times just to make sure I was awake.  Breakfast for Caden was a little weak and he ultimately ended up only eating about half of his waffle…….

At 9:30 we packed up and headed over to the SCCA for our days worth of appointments.  We started off with a quick meeting with the nutritionist and then at 11am we met with the financial services department.  It was really good to hear her say how good she thought our insurance was.  She said it was the best she had seen for our carrier which I thought was interesting…..We went back upstairs to the transplant unit and had our third meeting of the morning with the child life specialist.  Once we completed that meeting we were on our way to lunch.

For lunch we decided to take a quick walk up the street to the REI store.  They actually have a World Wraps on the second floor and that is what sounded good for lunch……. In our continual efforts to keep Caden healthy, even though we know he has a cold, we decided to get the food to go and headed back to our car in the parking garage of SCCA to eat……..   Once we were done eating we still had some time left so we decided to stay in the car and just let the kids goof off in the back.  At one point Caden decided to come sit up front and pretend that he was driving.  While he was sitting in my lap I noticed that he felt a little warmer than normal so I asked Pam to hand me up the thermometer and that is when the day started to spin out of control…………..

When I checked it was in the high 38’s which meant he had a fever and that we needed to get moving.  It was about time for our appointment so we went back upstairs and eventually got put into our room for our scheduled meeting with our transplant doctor.  When she came in I asked her if we could check Cadens temp and sure enough it was climbing…… We monitored him for a bit while we went over some of the paperwork for transplant and then once everything was ready they escorted us down to the infusion center where Caden got a bunch of IV fluids and started on his first set of antibiotics……….Before long they were talking about an ambulance and him getting a ride back to Children’s……I tried to reason with them that it seemed a little overkill to do an ambulance for this but they insisted so we complied………………I was over it at that point and figured it was really not worth fighting for, at least it was not and ALS Lifeflight from Montana……..Then the ambo crew showed up……….An ALS rig with a Critical Care Nurse on board……….Seriously? Whatever? Once again I figured it was not worth arguing about………….About 10 minutes later the Critical Care Nurse asked the floor nurse the same questions that I was asking because he was clearly confused why Caden needed an ambo as well.   Apparently all you need to say to make problems go away is “The doctor ordered it” because that is what he was told and off we went……..

The worst part of the day was the news we received while sitting in the infusion room getting his antibiotics.  Cadens cold is a virus called Parainfluenza.  If you recall last night i mentioned that there were only a few colds that they would not proceed ahead with transplant if he had them. Well, go figure, this is one of them.  Thankfully they found it because if he were to go to transplant with it it can often times be fatal…………..

Now for the worst part of the day.  The Paraflu is one that is particularly hard to get rid of and usually takes some time……something that we do not have much of these days……..There is one treatment that they usually do that takes 5 days  or so called Ribavirin.  The Ribavirin treatment is significant and involves a plastic tent over his bed, the rest of the room covered with sheets, nurses in powered respirators, me wearing a mask, etc, etc, etc…….Pam and Camryn will be excluded from the room for the 5 days as well.   The treatment basically impacts the DNA of the virus thus making it go away……….That is one option.

Option two is a new, non FDA approved treatment that Caden is a candidate for.  We have not heard much about this one but will first thing in the morning……..hopefully it is a little less involved than the first one………..At this point we are willing to consider anything that will work because if the virus does not go away we do not go to transplant….If we do not go to transplant then…..you get the point……

This evening once we got to our room at Childrens we eventually were taken down to get a CT scan of his chest.  The scan showed basically the same things that his X-ray yesterday did. Some inflammation around his bronchial tubes consistent with the Paraflu but not severe enough that we would start the treatments tonight….so, once again, hurry up and wait a little bit longer……….

So without a doubt at this point Cadens transplant is delayed………we don’t know how long even yet…………..What I do know is that we cant do transplant while this shit is in his system……….We cant wait too long as the cancer if left unchecked will eventually come back…..we have not had any treatment for almost 9 weeks now……….I don’t know if another MIBG treatment is in order or not but I surely intend to ask in the morning…………

A simple cough, sneeze, brush against a piece of clothing, or a virus floating in the air is what caused this. We will never know where the one that infected Caden came from but I can surely tell you that it will always be on my mind………… Many we have talked to over the past couple of weeks have tended to downplay a cold and clearly have no clue how serious even a minor cold can be…… I have been made the bad guy more than once over the past several weeks for not wanting to be around kids that were sick a week or two prior or to be around large crowds where anything can be lurking……a simple sniff to most can be ignored and is usually no big deal. A single cough for most can be ignored as well. Hell, for most people this virus is nothing more than the common cold………  In our world those things can mean the difference between life and death.  Unfortunately at this point we are dancing between those lines and finding out exactly what that means………… Every wince, every whine, every non normal noise Caden makes, makes me think up a hundred different reasons why he is making that particular sound. Most are not good.

It is strange sitting here once again next to Cadens bed writing the nightly update.  I knew that I would be back here eventually but really thought it would be next week and we would be beginning transplant.   At this point I just hope we get there……..

I honestly don’t know what else to say at this point. It is midnight, Caden is resting in bed right now but keeps waking up because he is having bad dreams. I don’t know if it is just one of those nights or if it is because we are back in this place, the sights, the sounds, the smells all too familiar and making it hard to sleep???…….Again, a million reasons why go fleeting through my head………….Pam summed it up earlier today when she said that no matter what we do we cant seem to get any steam heading forward……….every time we think we are making some progress we get shut down…………….In a lot of ways I feel like we are back at March 30th……what it does do is remind me to always seize the day. No matter what, make the most of every second of every day. Whether you decide to use those 24 hours on, family or something else it doesn’t really matter, just make sure you make the most of every single minute…….

FC……………………………………….

One year ago, on a beautiful winter Friday afternoon, December 9th, 2011, I saw the phone number for Seattle Children’s announce itself on my cell phone.  It was Dr. Tarlock saying that they had found cancer cells in Allistaire’s bone marrow.  They didn’t know yet what type of cancer it was, but we needed to get on the road to the hospital to admit her.  Only a week before she had gone to Children’s for the first time ever, in desperate need of blood transfusions.  On that day, December 1st, she had a hematocrit of 9 – only 25% of her red blood.  I later asked the doctor how long she would have lived with such a low hematocrit.  She calmly told me, “2-3 days.”  I will never, ever forget that moment.  The flood of terror that death had been so very narrowly escaped and the awe that I lived in a place in the world where I could get help for my child; immediate, excellent help to keep her alive.  Had I been living in another part of the world, I would simply have a dead child.

It has been one year – one leap year – since that day finding that monstrous word, “cancer,” dwelling intimately in our midst.  Prior to that, cancer was a word off to the side, far in the distance, relegated to the old and to the lives of those who seemed unreal, simply characters in a story rather than real, flesh and blood, moms and brothers, fathers and aunts.  Suddenly it came at us with rushing speed, like standing in front of a semi-truck barreling down the road straight toward you – and you stand, unable to move from the place where your feet are planted.  It is coming for you and there is nothing you can do, you are about to be taken down.

Today I am sitting in the Co-op in Bozeman.  Outside there is a terrific snow storm, causing giddiness to rise up collectively in the spirits of we Montanans.  I had to put the Suburban into four wheel drive to come into town.  I dropped Solveig off to make “Winter Wonderland” crafts at the Cancer Support Community of Montana.  They’re making decorations for the Cancer Care Unit at the hospital. These might seem like unremarkable activities and yet as I set these realities against the backdrop of the realities from one year ago – I am in awe – I am still in a bit of shock that this is my life – because it could have been so very different.  God took us down a path I could have never willfully chosen, a path i could never on my own desire.  A year ago, I felt my world cracking and breaking apart around me.  Sten had been offered a job in Bozeman on November 30th, the night before I first took Allistaire to the doctor.  The same night we had met with our real estate agent about short-selling our house.  In less than 24 hours, it felt as though everything had changed – we were on the cusp of walking down the road to such long hoped for goals and in a flash, seemingly insurmountable barriers rose up around us like looming dark walls.

I know I am redundant.  How many times have I recounted these details?  I cannot stop myself – this is part of my Exodus story.  The escape from the Egyptians, through looming walls of water of the Red Sea parted, is engrained in the Israelites.  It was the story the Lord commanded them to remember over and over and over.  Why?  Because it is the story of God’s deliverance, of His releasing them from bondage and into the provision and abundance of the promised land.  This is the story God recreates in a thousand, five million variations, over and over – it is the God that He is – a God who allows His finite creatures to be bound, that He might deliver.  Is He cruel?  He does it to demonstrate His love, His mercy, His grace, His power, His might, His glory.  Why?  Because He is arrogant and a showoff?  Oh, because He so unfathomably loves us and wants us to see Him, to see Him that we might have life!  Life!  He wants to bring us into the promised land – into Himself.

The thing is I am not done needing to be delivered, that’s why I recall this exodus in my life and why I recall the other stories of exodus that have also taken place in years long ago in my life.  In my email inbox the other day was yet another email from Anthropologie about a great sale.  I took a few minutes to peruse the offerings, all the while knowing we really didn’t have the money for me to be buying gorgeous clothes.  Two sweaters ended up in my cart.  I can’t wait and think this through, I told myself.  Sale items go quick.  If you want the good deal you’ve got to pounce.  With soaring speed, I pushed the “Order Now” button and it was done and I felt a rock in my stomach.  What was I thinking?  We have SO many other things we need to be spending our money on – tires for the car, getting the dog neutered, Christmas gifts, a trip to Seattle, paying the credit card – on and on the list goes.  The battle was on in my heart and mind.  Oh how beautiful these two sweaters are and such a great price, nearly half off.  Verses from the past week’s Bible Study Fellowship lesson rose up in my mind.  How I tried to push them back and convince myself it was okay.  There was a pair of pants in the closet I could return that I had not yet worn.  I was strategizing my sin.

“Do not store up for yourselves treasures on earth, where moths and vermin destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moths and vermin do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also.”  Matthew 6:19-21

The doozy passage for me was James 4:1-10  “What causes fights and quarrels among you?  Don’t they come from your desires that battle within you?  You desire but do not have, so you kill.  You covet but you cannot get what you want, so you quarrel and fight.  You do not have because you do not ask God.  When you ask, you do not receive, because you ask with wrong motives, that you may spend what you get on your pleasures.  You adulterous people, don’t you know that friendship with the world means enmity against God?  Therefore, anyone who chooses to be a friend of the world becomes an enemy of God.  Or do you think Scripture says without reason that the spirit He  caused to live in us envies intensely?  But He give us more grace.  That is why Scriptures says:  “God opposes the proud but gives grace to the humble.”  Submit yourselves, then, to God.  Resist the devil and he will flee from you.  Come near to God and He will come near to you.  Wash your hands, you sinners, and purify your hears, you double-minded.  Grieve, mourn and wail.  Change your laughter to mourning and your joy to gloom.  Humble yourselves before the Lord, and He will lift you up.”

This is me.  I am the double-minded.  I am the adulterer that claims One love but goes off with another.  This is one of the cancers inside me – the constant battle to satisfy my immediate desires that thwart my greater and more eternal desires.  It eats at me and gnaws and I give in and hand myself over to it, so many times.  It looks so innocent, even lovely, even beautiful in colors of blue and silver – two little sweaters – where is the harm?  Sometimes I have victory but I often know defeat.  There are walls of my sin looming around me.  I am surrounded by them.  They feel insurmountable and they are a battle that has already lasted far longer than a year.  I am in need of deliverance.  “But He [God] give us MORE GRACE!”  I am mourning and I submit myself to the Lord.  The Lord has overcome much in my life.  I look back.  I look back over days gone that I might have eyes to see the day ahead.  I need Him to overcome my sin, to search it out, just like insidious cancer cells hiding out in my flesh.  I need Him to come into me with His Spirit and undo the death that dwells so metastasized in me.

The next morning I called the Anthropologie customer service number to try and cancel the order.  It had already been processed and was shipped.  The battle waged on in my heart as my courageous attempt to drive a stake into the heart of my choice fell flat.  The sweaters were on their way.  How would I resist them?  Perhaps I would just try them on and hope that they didn’t fit or I didn’t like them.  Another day passed.  Verses came into my mind again and again.  The word of the Lord calling to me.  Harkening to me. Entreating me to come toward Him.  To release my grip on the pleasures that would bring me fleeting joy and leave me feeling ugly and defeated in short time.  I left a hurried message on Sten’s voice mail the next day.  Don’t let me open that package.  If I see them I don’t know that I can reject them.  Pathetic.  I know.  I feel the shame of my sad struggle.  How can something so small entice me so powerfully.  But beauty does this to me and I convince myself that beauty is not wrong, that my love and yearning for beauty is something that God created in me.  It is evidence of His beauty.  And these are truths.  Beauty is not wrong.  But I grab hold of the bit of beauty and reject the greater beauty and that is ugliness.

I had no intention to write about this struggle in my life, but here it is.  I celebrate this day as I look back one year ago and see how far the Lord has brought us – I walked through the valley of the shadow of death and have come out into a beautiful expanse, toppled walls behind me.  I celebrate what my Father has done and ask that He would continue to show us, to show me, more grace.  I ask for more toppled walls.  The Anthropologie package is supposed to be delivered today.  Wars are won a battle at a time.  War is gritty and unlovely and rarely glamourous.  I wonder how often the foot soldier felt nobel when no music played as he put one foot in front of the other trying to take ground.

I have no photos to show you of victories won in my heart.  But I leave you with pictures of life – tangible evidence of God’s grace extended.  I also have a few more numbers for you:  3,200 ANC, 6.4 white blood cells, 245 platelets and 40 hematocrit.  These were Allistaire’s blood counts on November 30th, 2012 – one year to the day from her first blood test.  Thank you GOD!  Our next appointment is on Christmas Eve morning, 12/24, at Seattle Children’s.  We thank God for giving Allistaire 7 cancer-free months since she ended her treatment!!!

I just put Allistaire down for her nap.  I rubbed her back, my head lowered.  She must have assumed I was praying because she said, “pray chocolate milk and french fries.”  Every single night we pray before dinner and I ask if anyone has anything to pray about, she always says with great exuberance, “how bout Trees!”  Almost as often, she wants to thank God for chocolate milk and french fries.  I know what you’re thinking, good grief Jai, if you don’t want your kid to have cancer, don’t give her chocolate milk and french fries. 🙂  I know you’re right but who can resist?  And who can resist a little scrunched up face full of glee at the thought of such tasty delights?

When God told Noah it was finally time to come out of the ark, after over a year inside, Noah built an altar to thank the Lord for his salvation, for his provision, for his goodness and mercy.  I have yet to figure out what sort of altar our thanks warrants, but it began with celebrating with some fro-yo, another tasty delight.  Oreos, gummy bears, M ‘n’ Ms and chocolate frozen yogurt.  Sten came with me to Allistaire’s appointment today.  We sat side by side in the waiting room trying to focus on the Jungle Book that was playing on the TV, trying to give Baloo all of our attention.  At the same time I asked myself what I will say when the reality of her cancer being back hits me.  “All the days of my life are ordained for me.”  God knew this day would come.  He has shown me over and over the He has gone before me.  He has provided abundantly in the past, He will be faithful again.  The verse from Amazing Grace came to mind, “Through many dangers, toils and snares…we have already come, Twas grace that brought us safe thus far, and Grace will lead us home.”  So often God calls His people to look back, to remember, in order to have courage for what lies ahead.  I prayed that God would make my face radiant, because I was fixed on Him, regardless of the circumstances.

Today my face IS radiant – radiant because my face is turned to our Father, who graciously extended Allistaire’s life – again!  Today Allistaire’s ANC is 2491 – the highest it has ever been in the past eleven months of blood tests since this all began.  Her hematocrit is 39, platelets 251 and white blood cell count 4.7.  She’s cranky and tired and pooky and a bit under the weather with a cough and a runny nose, but by all we can tell, she is well!  One should always wear waterproof mascara to these sort of doctor’s visits, you just never can tell which way things will go, but tears seem to be there regardless.

We had a few stops before we went home and everywhere I went store clerks said their dutiful, “have a nice day.”  Nice day?  It is the most glorious day!!! I couldn’t help myself, I just had to tell them that Allistaire’s cancer is nowhere to be seen!  We are alive – we might not be.  What would it be like if I was just as surprised and shocked and overjoyed every day that I wake up to another day of life and I witness my husband’s life extended, my children’s, my parents, my dear brothers and sisters and friends?  I would probably come across as obnoxious, but seriously, is it not incredible?!  Man, these have been some seriously rough days.  Everything has been laid on the line once again.  Dr. Pollard said that Allistaire’s cancer is most likely to come back within the first 6 months if it is going to come back.  Today is November 6th – not so much election day, as “Allistaire is Alive and Well Day” – 6 months and 4 days since she was discharged from the hospital.  Praise the Lord, Praise the Lord Oh my soul!  To God be the Glory, great things He hath done!

Thank you again for your bountiful prayers – your persistent prayers, and please do not stop praying for us!  And please keep Caden and Stellablue in your prayers as well.  Also Piper, remember Piper?  Piper was diagnosed 2 weeks after Allistaire and had all great 0% bone marrow tests just like Allistaire.  A week and a half ago, they found out her cancer has returned.  She is back in the hospital and has already had her first round of chemo.  Please pray for her also!

One last thing – in my post yesterday I mentioned in passing that the sun sat “average” in the sky – nothing to mark that day as any different from the rest.  Well, God gave me quite a view of the sun only hours after writing that.  A sun to mark the day – a sun not to forget. He is so good to me – in small ways and big!

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How do you live your life when you literally don’t know what the next day holds?  Will I be at work on Wednesday or will I be in Seattle?  Should I say yes to that invitation for brunch this coming Saturday morning?  Should I call to set up a date for our friends to come over for dinner?  Should I do my errands today or the laundry or should I set everything aside and spend the day at the park doing Allistaire’s favorite things because it may be her last day at home?  What should I make for dinner tonight – what if it’s our last dinner together?  Should I insist that Allistaire walk up the stairs herself or should I carry her as she demands?  Every choice feels weighty, but little feels weighty enough because time passes regardless; there is no stopping the future from becoming the present, the unknown from becoming known.  The afternoon sun sits average in the sky, nothing to mark this day as any different from the rest.  I sit in my chair by the window, the house quiet again as Allistaire is taking her nap, Solveig is in school and Sten is at work.  The only sound is the rushing wind in the trees and the creaks of the door, giving under the pressure of the invisible force.  I know that it is entirely possible that today is the very last day that we might all four be together, living a fairly normal life.  I feel foolish and melodramatic to say it, but I have also seen enough to know it may be truth.  We are having chocolate chip and apple pancakes for dinner tonight and I hope I can enjoy it and not simply cry.  Logic tells our brains that life as we know it, is always vulnerable to change – how in a flash it can all be different.  We have all heard countless stories that inform us that this is true, yet here in our midst is this pervasive reality that infiltrates all the hours of our life.  This truth, that we can neither know or control the future, has settled heavy into our depths.  We lug this reality into every day from the first opening of my eyes in the darkness of early morning, throughout every activity of the day and, there, it lies beside me at night.  Try as I might I cannot make it go away; I cannot pretend not to see it and I catch on it and my heart snags over and over.  Joy feels constantly counter-balanced by sorrow.  Every delight reminds me that I may no longer know it, it might be whisked away.

I want so much to say that I know today, perfect rest and peace.  I want to say that in these past 14 days, sorrow and fear have been defeated.  An hour has not passed that I have not wrestled, wrestled with my God, pleading, bargaining, submitting, resting and then crying out again.  There is no good outcome if Allistaire’s cancer is back.  Even if her life is spared, there will, nevertheless, be great cost.  But I am oddly comforted in this, Christ Jesus was said to be a man of sorrows.  He looked sickness and death and poverty and betrayal and evil in the face and called it wrong, declared it to be other than as things should be.  He did not overlook these woes, nor did He falsely call them good.  He was a man who wept and whose heart knew compassion.  The truth is, He came into this world to undo them, to put an end to them and, most amazingly, to transform them.  And Jesus’s sorrow was not only for the pain experienced by others outside of Himself, but it was also for the horror of what God the Father called Him to do.  I keep circling back around to seeing Christ in the Garden of Gethsemane.  I have felt shame for my breaking heart, as though knowing God should make me impenetrable to the pains of this life.  Nothing could be further from the truth.  For as I peer into the Garden on that night, I am told that Christ literally sweat blood in His anguish, in His troubled Spirit.  He bowed before the Lord God and asked if “this cup” might be taken from Him.  He did not run joyfully to the cross, nor did He approach it stoically with no emotion.  He was in great anguish and asked the Lord to take away this reality.  I am not Christ and yielding my life and Allistaire’s life to God is not anywhere near bearing the sins of the world, yet, yet, I know great anguish, and I ask the Lord to not let this be, please have mercy and allow this to pass me by.

This is not the end of the story of Gethsemane though.  Each time Jesus asked God the Father to take this cup from Him, He also said, not my will, but your will be done.  While He was in tremendous turmoil in His heart and He repeatedly asked God for another reality, He also repeatedly submitted, yielded, acquiesced to the will of His Father in Heaven.  In the ultimate way, He trusted His Father and saw Him as good and out of that vision of His Father, He yielded, He laid down His life in obedience to what He was called to.  The peace I have on this afternoon is drawn out of the vision of my Father.  I know that tonight could be the last night I put Allistaire to bed in her crib in her room at our house.  Tonight’s dinner could be our last dinner the four of us share in this house.  I might not see the passing of winter at our house this year.  Tonight might be my last night to lay down to sleep in my own bed for a very, very long time.  I may have already picked Solveig up from the bus stop for the last time for months and months.  I am in anguish as tomorrow approaches.  I am keenly aware of our possible loss.  And yet, right next to my sorrow, side by side, sits weighty my hope in the Lord, the yielding of my will to His will.  God does not call Allistaire’s sickness or her possible death good…but…He is the God of resurrection, He is the God of Redemption, He is the God of Transfiguration, He is the God who breathes life into the lifeless, who turns hearts of stone into hearts of flesh, who purifies the ragged refuse of our hearts and make us clean, who took the five loaves of bread and the three fish and fed tens of thousands, He is the God who brought the Israelites out of slavery, He is the God who breaks the bars of our slavery and allows us to walk with heads held high, He is the overcoming God, He is eternal and His purposes are eternal and His ways are eternal and far beyond and way, way out into the far-flung universe and beyond is our God.  He is the God who dwells in darkness because He turns it into light.  The future I fear looming before me is not static.  I cannot see beyond the edge of the horizon but there is an eternal landscape of glory and beauty and fullness of life and it is there, even if at this present time I cannot see it.  There is horror before me and it seems that my insides might split open under the weight of it, but I bend my knee, I yield, I yield, I go low and I wait, I wait on the Lord.  I am looking at my God of transfiguration, who in the long view of all of this will bring life, even out of death and bounty even out of loss.

Allistaire may be perfectly fine and I pray she is.  She may not be.  I have not yet fully learned the practice of walking in fullness of rest with the Lord.  I still wrestle; I still know turmoil, but like Jacob, I will not stop, I will not stop calling out to the Lord to bless me.  Make your face known Oh God!  Make my face radiant because I behold you!  Be faithful to all your promises – for your name’s sake!

Thank you for all of your prayers – for all of them -and for the many beloved sisters in Christ I have only recently come to know – I love that I am bound to you and you to me.  I know we are surrounded on all sides by those that love us dearly and cherish Allistaire.  I know that you all form a great wall of strength and love around our lives.  And yet, I have to say, I am so thankful that there is yet greater hope, there is yet greater strength and love to appeal to!  I am not reliant on “positive thoughts,” to see us through, nor on science and amazing medicine.  I am utterly indebted to these, yet I need more, ever so much more to carry us through.

“Listen to me, you descendants of Jacob, all the remnant of the people of Israel, you whom I have upheld since your birth, and have carried since you were born.  Even to your old age and gray hairs I am He, I am He and I will sustain you.  I have made you and I will carry you, I will sustain you and I will rescue you.”  Isaiah 46:3-4

This is a video of our simple happy life I am so inexpressibly thankful for:

This is the picture I had hoped to put with today’s post – a sort of, “victorious, I’m alive” kind of picture.  I had hoped, and even felt fairly confident, that I could relay the joyous news that yet another blood test confirmed all is well with Allistaire.  I don’t have that confidence today.  Allistaire’s ANC dropped by nearly half since last month – from 1750 to 928 today.  Her white blood cells went from 4.3 to 3.2.  However, and thankfully, her Hematocrit is 40 (last month was 42 and this is a totally insignificant difference) and her platelets are 256 (259 last month).    Our doctor here in Bozeman consulted with Dr. Pollard at Seattle Children’s who said she is not too concerned by these numbers as there can be natural fluctuations or it could be the onset of a virus.  Or it could be the first signs of her cancer returning.  We have to wait 2 weeks and draw her blood again.  Her appointment is set for 11am on November 6th.  Dr. Ostrowski and Dr. Pollard were both encouraged that by all outward signs she is doing very well.

As I sat in the waiting room of the doctor’s office, the minutes ticking by, knowing any moment the nurse would call us back and I would find out her numbers – I sat and read Psalm 34 over and over, clinging to particular verses:

“I will extol the Lord at all times;  His praise will always be on my lips.  I will glory in the Lord; let the afflicted hear and rejoice.  Glorify the Lord with me, let us exalt His name together.  I sought the Lord, and He answered me; he delivered me from all my fears.  Those who look to Him are radiant; their faces are never covered with shame.  This poor man called, and the Lord heard him; He saved him out of all his troubles.  The angel of the Lord encamps around those who fear him, and He delivers them.  Taste and see that the Lord is good; blessed is the one who takes refuge in Him…”  The Psalm goes on and on, “The Lord is close to the brokenhearted and saves those who are crushed in spirit.”

My heart is breaking.  I do feel crushing weight on all sides.  “I don’t want this God!  Please, please don’t let it be.  Don’t take my life and rip it to shreds.”  I mentioned to Sten the other day where we could put the Christmas tree come Christmas time and in the back of my mind I wondered if I should even speak of such things – do I even dare imagine Christmas here in this house.  What if it doesn’t come again this year?  What if we are separated again?  What if, what if, what if…I feel myself falling into the dark.  I can’t seem to get a grip to stop my fall.  I don’t see how God is going to deliver me from all my troubles.  The Lord is close to the brokenhearted and saves those who are crushed in spirit, but the thing is – I don’t want to be brokenhearted or sense my spirit crushed.  Can’t you keep me from being broken and crushed in the first place God?  I know that dark place and I don’t want to go back, because this time, I fear the dark will be so much darker than before.  I think I know where that road may end.

My heart is flailing, reaching out for strongholds.  I call out to the Lord.  “Be joyful always, pray continually, give thanks in all circumstances, for this is God’s will for you in Christ Jesus.”  Give thanks in all things – how God, how?  How do I thank you for this?

“Eat the manna, Jai.”  Allistaire’s little voice perked up in the back of the car as I struggled to see through the tears, driving down the road, attempting to pull it together so that I could do the errands on my list.  I can’t even recall what she said, but God used her little cheery voice to speak to me.  I turned my head slightly and saw her sweet joyful face with the big pink sun glasses on and a row of little white teeth, blonde hair sticking up all crazy from having her snow hat on earlier.  “Eat the manna, Jai,” is what the Lord said to me.  Soak her in.  Take this day that I have given you.  I have given this day to you.  This day – and all that it contains – is a gift from me.  Manna is food for a day.  God has promised provision for me for this day, today, right now.  Manna is God’s Sabbath rest now, here, in this land on this day.  Manna was what God gave the Israelites for food in the desert as they waited four decades to enter the Promised Land.  The manna only lasted for a day.  You could not hoard the manna.  Manna was gathered each day and God faithfully provided it, each day.  “Look around you and give thanks for what I have given you this day.”

Allistaire is alive today.  She is cheery and sweet and singing and spazing out in the shopping cart and woggling her head and she is full of life and joy.  Today the mountains were dusted with beautiful snow.  This morning the blue glowing light of reflected snow filled the house.  Today we are together.  Today the Lord is holding me up.  Today He hears my cry; He is attentive today.  There is no way this is enough to carry me down that awful road.  It’s not supposed to be enough for the journey.  It is enough for today.  I am so far from done learning these lessons.  I am so far from having taken in the full view of God.  The snow is falling again and soon this day will come to a close.  Tomorrow will be a new day, with new manna, new provision, new gifts, new glimpses of God’s goodness.  He promises to take me day by day through all the days ordained for me.  When I set my eyes on the dark road, there is no way not to be filled with fear.  So, I set my eyes on Christ, the author and perfecter of my faith, who for the joy set before Him, endured the cross, scorning it’s shame.  I am on the lookout for Christ, the good God.  I am looking for You, Oh Lord!  I want to see your face.  I walk on, for the joy set before me, sustained today and hoping in Christ for tomorrow.

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Hello Folks.  Yes, this afternoon I am directing this post to each of you – to all the people who have ever read this blog and cared about our life and our little beloved Allistaire – to you in all 44 countries around the world that have read this blog at one time or another and thought to consider the preciousness of a little life…

I am asking for all of you that believe in a gracious mighty God, that you would pray especially for two dear little lives and for their families.

Some of you may remember the, “Stronger,” video one of our AML hospital friends put together earlier this spring.  If it’s been a while, check it out again here and look for Stellablue – she’s the one holding a “Hope” sign while her dad, Andy, holds her little sister, Soren, and pulls her IV pole.

This past January 2012, I was in Bozeman visiting Solveig who was here living with her grandparents while Allistaire was in the hospital.  It was at this time that I first heard about Miss Stellablue who is from Bozeman and who was diagnosed with a Wilms Tumor, which is a type of kidney cancer.  As I sat in Burger Bob’s in Bozeman and read the Bozeman Chronicle article about her, I was stunned to learn that she and her family were also at Seattle Children’s.  I immediately felt a strong bond to them and planned to search them out once I returned to Seattle.  I didn’t have to look hard.  It turned out  that they were in the very room next door to Allistaire.  To meet Andy and Andrea Woods, Stellablue’s parents, is like experiencing a living bit of Bozeman, Montana.  They were a breath of fresh air and made me feel strangely homesick.  Over the following 6 months, I had many occasions to walk the halls with Andy while he held little Soren.  Stellablue’s little sister, Soren, was just two weeks old when they first came to the hospital in September 2011.  I treasured each conversation with Andrea as well.  Both of our families rejoiced in hoping that one day – probably sometime in June, we would all be in Bozeman with cancer-free kids, settled into our homes and enjoying the magnificent beauty of Montana and “normal” life.

It has turned out that Stellablue only had the summer at home.  Routine CT scans back at Seattle Children’s revealed her cancer is back – in three spots on her lungs.  Her dad, Andy, says that they are looking at having to be in Seattle for 6 months to a year this second time.  These are Andy’s words from their most recent Caring Bridge update: “We had our meeting today with the Drs. It went kinda how we expected it to. Stellablue will get chemo, then they will collect her stem cells- as they say to rescue her – after the very strong chemo they will give her after that. If this doesn’t work then all we have left are clinical studies to try.”

More than anything, please pray for Stellablue and that the chemo would be effective.  Please pray too that God would make Himself known to Andy and Andrea, that they would be held up by His great strength and know the comfort of the Holy Spirit.  While prayer is the most important need, the reality is that all of this is extremely financially straining.  They have already had a 10-month stay in the hospital and now they are looking at another 6-12 months.  Andrea really needs Andy to be out there in Seattle as well because if little Soren gets sick, which most 1 year-olds do about every other day, she cannot be in the hospital caring for Stellablue.  Andy’s presence is essential and yet he is also the breadwinner of the family.  As a tiler, his business is in Bozeman and thus not something he can do on the road.  If you have the means and desire to help them out, there is a Wells Fargo account in which you can deposit on their behalf.  The name of the account is, “Stella Blue Woods Family Benefit Donation Fund.”

To keep up on the details of what’s going on for Stellablue, go to www.caringbridge.org and type in “stellabluewoods” in the box to visit a site.  There is also a Facebook page entitled, “Stella Blue Woods Family Benefit,” intended specifically for organizing help for their family.

Months later, in March 2012, I met Pam and Jason Shrauger.  Because the hospital became my home for so many months, I was always very aware when new folks came.  I keenly knew the fear of the unknown, then fear of a diagnosis and the overwhelming reality of a treatment plan and so I always hoped to find a way to show love and support to those who had just come to the hematology/oncology unit and were beginning their journey.  So of course I was drawn to Pam when I saw her in the hall pushing baby Camryn in one of the little car strollers.  Again, it was with mixed joy and sadness that I learned they were from Bozeman.  I recall a few days later when the group of doctors came down the hall and indicated it was time to go into Caden’s room and discuss a diagnosis.  I remember vividly seeing Jason leave that room sometime later – I knew the look on his face – now they knew – Caden has high-risk neuroblastoma.  They were told that it would take 15 months to treat Caden beginning with months of chemo, then a stem-cell transplant, then anti-body therapy…

All seemed to be going well until this August when it became clear that the chemo was no longer sufficiently effective.  Caden was take off of the standard protocol and only days ago finished a week in San Francisco for experimental MIBG therapy which delivers high levels of radiation to neuroblastoma cells, hopefully destroying them and not too much else in the process.  In the coming weeks, they wait for Caden’s radioactivity level to drop and expect to get scans the week after Thanksgiving to determine how effective the therapy was.  If all is well, they will be back on track for a transplant in December.

Please consider including Caden and his parents, Pam and Jason, in your prayers as well.  You can get regular, nightly in fact, updates on Caden also at www.caringbridge.org and type in “cadenshrauger” into the box to visit a site.  I am so thankful for these Caring Bridge sites which allow me to know how to specifically pray.  You can sign up to get an email or text every time there is an update.  If you are interested in ways to support Caden and his family you can go to www.team-fc.com.  It is a strange joy to be bound to another sister-in-Christ, mom, cancer-fighter, Bozemanite – but I count it joy and privilege to know Pam despite the reality that has brought us together.

Thank you too for your continued prayers for Allistaire.  As may becoming clearer, we are ever aware that every day with Allistaire is a gift and we cannot assume that she is done with cancer.  Tomorrow, October 23rd, is her next doctor appointment and blood draw.  Tomorrow marks the fifth monthly blood test and nearly the 6th month since the end of her treatment (she was officially discharged May 2nd).  She seems to be doing well based on all her silly cute spazyness, but discerning what is going on for a 2 1/2 year old can be quite challenging.

Right now it is snowing and the whole world is turning white.  So beautiful!

Okay, so a gigantic pile of moose poop in my front yard isn’t the most important thing you may want to know about our life recently, but it sure did bring me a good laugh.  The momma moose and calf moose were up by the apple trees last week.  What a delight to have them around.

We’ve had a full last month or so.  A few days after we arrived home from our Seattle trip, Solveig started her first day of school as a first grader at Hawthorne Elementary.  Because of all that happened last year, she neither attended kindergarten, nor was fully home-schooled.  She has learned to read and do awesome things like count to 100, but I’m guessing there are gaps.  We are thankful she has a great teacher and is in a K/1 split class.  When I ask Solveig each day what she did in school, she either begins with the important subject of lunch or recess.  Her cousin, Haaken, also is at Hawthorne and so they often get to play together.  Currently she is learning all about the solar system and comes home with cool facts like that the earth rotates around the sun and the moon rotates around the earth. They learned about the phases of the moon by eating away the chocolate top of an Oreo.  Brilliant!  Perhaps Solveig’s favorite part of school, or at least the most anticipated part, is riding the school bus.  She is growing up and has to transfer buses at the high school all by herself.  Here she is on her first day of school:

The week after school got underway, I had the joy of having a dear friend from Seattle come for a week-long visit.  We had a great time enjoying the family and the glories of Montana together.  One day she was here our 16 mile hike inadvertently turned into a 21 mile hike due to a wrong turn which we joyously blame on Sten who claimed the trail was, “well signed.”  We also hit up Yellowstone one day and Allistaire had a great time looking for animals with the binoculars.

Only two days after my friend left, my brother, Patrick, my sister-in-law, Briana, niece, Lucy, and nephew, Elijah, arrived for a great visit.  While a one year old limits how far afield you can go, we had a wonderful time just being together.  Allistaire and Lucy played amazingly well everyday while Solveig was in school.  On their last evening here, we took a glorious hike up Sypes Canyon and enjoyed amazing fall color of every kind and beautiful glowing sunset light thanks to the still present forest fire smoke.

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In between visits, Allistaire had her fourth blood test since she finished her treatment.  She has been doing so well, I nearly forgot to pray before coming in for the appointment.  However, once the doctor was reading back the test results, it began to seem that her white blood count was steadily declining, based on a trend from the last several months.  I asked if it was possible for only one blood line to trend downward if her cancer had returned.  Our doctor spent a while on the phone with Children’s while Allistaire and I waited in the room.  I couldn’t believe it – I couldn’t believe I was once again waiting in a tiny room, trying to hold it together but feeling like I was going to burst.  I fought back the tears and tried to appear “normal” for Allistaire’s sake.  The doctor returned and said that it is true that only one blood line going down could indicate the return of her cancer, but, she had made a mistake.  What looked like a downward trend only looked that way because she had accidentally read the most recent blood test results that showed up on her computer – July’s results.  August had been in Seattle and the blood test that day, on September 20th in Bozeman, had not yet come back.  Needless to say, I was totally relieved and her numbers looked better than they have so far (Hematocrit: 42, Platelets: 259, White Blood Cells: 4.3, ANC 1750).  However, the tears just flowed out.  I could not help it.  I was once again so intensely reminded of the reality of how possible it is for her cancer to return – not that I don’t already think about it every single day – many times every single day.

Living with my beloved and knowing every day that every thing can change in a flash has been the very hardest thing these past four months.  I live with the joy that God has spared her life, but with the knowledge that at any time He could reveal His will that things will change with her.  On Saturday I had the heart-breaking news that Stellablue’s cancer looks like it may have returned.  We met she and her parents, Andy and Andrea Woods, while we were in the hospital.  They were there from last September until this June.  They live only a few miles from us here in Bozeman and went back a to have her regular CT scans and a spot on her lung was revealed.  It could be a fungus that she has been battling, but the doctor is leaning toward it being her cancer.  She had surgery last night to take a biopsy and now they wait to find out results.  Our other friends from Bozeman, Pam and Jason Schrauger, are in San Francisco so that today, their four-year old, Caden, can have MIBG therapy that will hopefully destroy his neuroblastoma.  His transplant had to be put on hold because his cancer did not sufficiently respond to chemotherapy.  This is their one hope that he can get back on track with his treatment.  At the beginning of September, I got word that a young man, Mario, had died – after five years of battling his cancer with 3 relapses and a transplant.  In the end, it was not his cancer itself that killed him, but his lungs gave out.

I thought that it was un-dealt with sorrow, pent-up weeping that was what has had a strangle hold on me these last several months.  I’ve explained my quick temper and lack of patience being due to needing to process what has happened and constantly having to hold everything in.  I have felt like a dam of mighty rushing waters has constantly threatened to unleash.  I have felt brittle and tender – only holding together by the thinnest of skin.  Every single Sunday at church I have cried and cried.  Again I tried to shut down the torrent of tears on my first day in my new Bible Study’s discussion group.  Another woman also found herself crying and was shocked by it – she has had a long list of woes and asks that we pray for her immense sense of apathy.  I understand that – it is dangerous to feel.  To open the door to what is building inside you is too chaotic – that wild, thrashing sorrow that defies control.

The truth is, more than sorrow for what has transpired, there is sorrow for what may still be.  The truth is I have been wild with fear.  It has been a cold, clammy vice around my throat that has left me gasping.  Last week I spent four days all alone.  Four days in a hotel room with the chair in front of the window, the sun streaming in and I wrestling with my Lord.  The truths of those days require savoring so I will write of those on another day.

For now, just one last thing – thanks be to God for bright fall afternoons and shadows dancing across the floors, the trees moving wild in the wind

A few people have told me that I was faithful – that through everything that happened with Allistaire, that I was faithful to God.  To tell the truth, every time I hear this, something in my guts twists and I feel myself pushing back at this statement.  Faithfulness is not at all the word that comes to mind for me.  To say that I was faithful sounds as if I did something right, something strong, something noble.  No, the pervading sensation was desperation, was clinging.  I had no other choice.  That’s how it felt to me.  Even now, when something comes into my moment, into the day that throws me back into that place and time in the hospital, like a trigger from Post Traumatic Stress Disorder, I find myself reaching out my tired arms to the Lord and asking that He hold onto me.  When Allistaire throws a fit or refuses to eat; when she asks for help going up or down the stairs or wants a hug, like a strange portal through time, I feel myself being whisked back into that darkness, that dread and fear of what might be going on inside her body where I can’t see.  When I read the text from my friend telling me that one of the other AML girls is having a really rough go and she may not make it, my heart thuds slow and thick.  I go out to the deck to make myself look up at the stars – to remember the splendor and wonder and vastness and complexity of my God – to force myself to crane my neck back and with this view in mind, call out over and over that He would show mercy to her flesh.

Since I was a teenage girl, I have had a habit of looking for the first star at night.  I would wish upon that star.  I would pray to God any number of things and nearly every time there was the prayer that should something awful ever happen in my life, that He would help me to not turn away from Him.  It seems to me that God has been the faithful one and yes, He has enabled me to keep my face turned toward Him.  I know that this is a great gift from Him, because there have certainly been other times in my life that I have not felt drawn to Him and it has seemed as though He was content to let my heart and life wander far and at a distance from Him.

One of the most beautiful, wondrous, mysterious things about God that I have grown so much in my delight for over this past year, is the way in which God has allowed me to see His faithfulness in how He has gone before me.  I pray often, “Hem me in, behind and before.”  I ask my Father that He would go ahead of me down the road and that He would come up close behind me.  That on all sides I would be surrounded by Him.  I constantly see my life in my mind as a journey I am on.  I used to assume there was a road upon which I was traveling.  In the last year, the Lord has shown me that, no, sometimes there is no road, not even the dimmest trail to follow, but rather, He Himself, Christ, is The Way, and He lays Himself down for me, so that there is always sure footing for the next step, but sometimes it really is only one footstep at a time.  While from my perspective, there is no visible path, there is no way to look down along the road and anticipate what is coming, I have discovered over and over, that while the direction of my life is kept hidden from me, God has gone before me.

A number of years ago, Sten and my dad, hiked the Wonderland Trail – 95 miles encircling Mt. Rainier.  They were gone 11 days and we had planned that I would meet them at Long Mire to bring them a cash of food.  They came around the bend and there I met them at a picnic table with the tastiest lunch I could think to come up with.  Hikers will sometimes arrange for cashes of food to be stored at various points along their journey because there is no way for them to carry all that they need from start to finish. This is how it has felt to walk with the Lord this past year.  I have discovered at various points along the way that He had gone before me and provided, in abundance.  When I consider my most significant needs over this past year, I am awed to see the very specific and tremendous ways that God, long before, laid down foundation stones in my heart that allowed me to stand in more recent times.  Some get very dogmatic that God created the world in 6 days, I personally believe He very well may have, yet I derive such joy from seeing how creativity is so core to the character of God that He could not stop Himself.  He has not for a moment, stopped creating.  What creative person has worked hard and long on a project that turns out beautifully, that says, now I have no desire to create any more.  No, creativity fuels more creativity, and while the fundamental elements of creation may have been completed long ago, I have sensed God crafting in me something of His own intention, something that I think He really must be giddy about.

In my church growing up we repeatedly sang a song I found utterly repugnant.  “Spirit of the Living God, fall a fresh on me, melt me, mold me.”  It sounded disgusting to the mind of a 10-year-old, and I still think a different selection of words would be lovelier.  Yet I have had the odd sense that God really is doing this in me.  I am realizing that, as tears come so quickly to me, that I still feel broken, I still feel frail.  I still feel as though, while the skin may have healed over, the wounds remain deep.  It is a strange thing for it to dawn on you that the God you love, the God that is said to so unimaginably love you, has been the breaker of you.  Yes, I hold Him responsible.  He came down and broke my clenched fist.  He came down and broke my bones; those bars of strength that have held me up all of these years.  He tore at my heart, not just once, but over and over until it was raw and bleeding and weeping.  This lover of my soul has done this to me.  I am ever in awe that God is at times so brutal, such a ravisher, such a destroyer.  One cannot get away from the truth that He allowed His own Son to be put to death.  Who is this God?  I ask and I cry and I wail out at God under those stars and the faint cloudiness of the Milky Way stretching across the sky, “Who are you?”  But here, in the silence of the starry night, I hear the reply, “I am the one who tears down and binds up.”  You see, I have found this elegant, halting, beautiful mystery: part of His creation is destruction, but it is a creative destruction, like pick-up-sticks, where each move is carefully considered, God pulls apart.  But His destruction is for the sake of building, of raising up.  It is hard though, I do not see how His steps lead to something lovely, sometimes it only looks like destruction, sometimes it only looks brutal and harsh and ugly and wicked.  Yet we are so incapable of seeing the long view, we who dwell in the land of manufactured homes and fast food chains, we who scoff at dial-up and pagers – TOO SLOW we bellow.  We are no longer acquainted with craftsmanship.  We have no patience for things that take a long time to be made, nor are we willing to pay the high price for such works of art – beauty that stands the test of time and spans generations.  If the cathedrals of Europe or the pyramids of Egypt seem like they took a long time, and a ridiculous amount of effort and expense, we cannot begin to calculate what God is up to.  His ways seem foolish, outlandish and sometimes, just downright wrong.  We lack view, we lack perspective.  We stand on our tiny hill and yell out in raging anger and pain, “I don’t get it.  What is the point!?  How dare you!”  But then sometimes, you come to a bend in the road, and you cannot believe your eyes, for there is delightful, abundant nourishment and the realization sinks into you – He went before me.  There seemed to be no road.  There seemed to be no direction.  I felt as though I was wandering in a desolate land.  But you feast on the provision and you get a glimpse, a small crack in the door that shows you, He is so very far ahead of you.  While He was still by your side, and as He took up your flank, He was at the very same time laying down a provision for you, that you needed so deeply you could not even conjure words to ask for it.  But behold, here it is, the meeting of your need that took years and a thousand situations to construct.  As your knees were about to buckle and your throat rasped with aching dryness, you came around the bend and took in the view of God’s sovereignty, His lavish provision.

A.  We were sucked up into an alien space pod

B.  We were witness to an international drug cartel and were whisked away into witness protection

C.  We live so rural that we had to wait 7 weeks to get internet service at our new place in Montana

D.  I was tired and weary

Answer:  Well mostly C and a little of D

It has been three months since I’ve written.  I can hardly believe it has been so long.  I needed a total break but this was certainly longer than what I had envisioned.  So, with three months worth of life, I will attempt in this post to provide a succinct overview.

Most importantly, Allistaire is alive and well.  She has had three of her monthly blood tests and all her counts look good so far.  She is growing in height and weight, talking up a storm, running and jumping and being stubborn and painfully cute and scowling under her furrowed brow.

Here are the major events of the last 3 + months:

April 13th – Sten and Solveig moved to Montana and began living with Sten’s parents

April 19th – We put our house in Kent up for sale

May 2 – Allistaire completed her treatment for AML and was discharged from Seattle Children’s Hospital

May 13 – We had an offer on our home with a completed and approved home inspection

May 15 – Allistaire had her Double Hickman Catheter (aka tubies) removed.  Allistaire and I then got in the car within minutes of her surgery and drove to Bozeman to join Solveig and Sten in Montana

May 31 – Allistaire had a weird rash on her face.  Called Dr. Pollard, Allistaire’s attending doctor at Children’s, at 5pm Seattle time/6pm Bozeman time, she recommended Allistaire get into see the doctor the next morning. Called the medical group she had recommended and got an appointment with a doctor new to their practice the next morning.  Attended a Cancer Survivors event put on by Cancer Support Community of Montana

June 1 – Allistaire saw Dr. Angie Ostrowski at Medical Associates in Bozeman at 9am.  She did not think the rash was indicative of anything concerning but consulted with another older pediatrician and called Children’s to discuss with Allistaire’s doctors there.  I really like Dr. Ostrowski and decided to keep her as our local pediatrician

June 3 – We purchased a Karilian Bear Dog puppy we named Finn

June 4 – Ruby passed away

June 6 – Solveig, Allistaire, Finn and I drove back to our home in Kent, Washington

June 8 – Found out Meadow House in Bozeman where we were going to live, would be available for us to move in by the end of the month – massive house packing endeavors began

June 11 – Allistaire had her first check-up appointment at Seattle Children’s.

Hematocrit 37.5, ANC 1645 and Platelets 204

June 12 – Took our puppy Finn to the vet because he was strangely sluggish – thought maybe he swallowed a rock

June 14 – Took Finn to emergency vet because he wouldn’t walk and was in a lot of pain

June 16 – Picked Finn up from the fourth vet that week, $800 later and he was good to go – actually suffered from a severe infection from a probable puncture wound in his upper leg

June 22 – Sten flew in from Bozeman and we drove to Southern Oregon to visit with his Aunt Lucy

June 23 – Drove to P0rtland to visit friends Jeremy and Christy

June 26 – Arrived home and finished packing the house

June 27 – Picked up the massive U-Haul truck, packed the moving truck and Sten’s parent’s truck.  Got word that Citi Bank had officially approved the short sale of our house!

June 28 – Cleaned the house and were on our way to Moses Lake, WA by 4 pm

June 29 – Arrived in Bozeman that evening and ate dinner for the first time in our lovely Meadow House

June 30 – Sten’s family helped us unpack the truck and move into the house

July 2 – Enjoyed Livingston Rodeo with the family

July 10 – Allistaire’s second monthly blood test and first official visit in Bozeman.  When the nurse who was going to draw Allistaire’s blood read her name on the file, she turned to me and said that she has been praying for Allistaire for months.  The tears came quick as I once again was reminded of how many have loved us through all that has happened, even people whose names I have never known and whose faces I have never seen.  Dr. Ostrowski mentioned to me that she and Dr. Rebecca Gardner at Seattle Children’s were close friends  as fellow residents in Salt Lake.  Dr. Gardner is one of our dearest doctors even though we only had her in the beginning due to her maternity leave.  She is the doctor that communicated the news and details of Allistaire’s diagnosis with us.

Hematocrit 38, ANC 1170, Platelets 239

July 14 – Sten’s oldest brother, Peder, and our sister-in-law, Jess, have their second born son, Per (pronounced “pear”)

Mid July – Dr. Pollard called to ask if I would be willing to participate in a PBS special involving Mike Loken of Hematologics who was responsible for reading and interpreting Allistaire’s Flow Cytometry test results.  Dr. Pollard affirms that Allistaire’s blood counts look good and relays that Dr. Gardner at Children’s said that she would send her own children to Dr. Ostrowski.  I am amazed at God’s provision for Allistaire and us in Bozeman.

August 2 – Solveig’s 6th birthday that she and I spent celebrating together.

August 9 – My parents arrive in Bozeman for a much anticipated visit

August 10 – The sale of our home in Kent closes – we are freed!

August 12 – I wake mom and dad up to come out to the backyard and see the bear eating berries up behind the clothes line

August 14 – Sten alerts us that there is a big bull moose out by the garage.  Mom spies another bull moose four feet from the first.  The two  moose make their way up into the front yard, past the kitchen window and eventually walk right past the front door

August 15 – Mom and Dad head home

August 16 – I get my Montana Driver’s License and register to vote – I am officially a Montanan!

August 18 – We FINALLY get internet installed (satellite turned out to be our only option).  That evening we headed up Trail Creek to Stellablue’s house for a “we’re finally home and well” party.  We were overjoyed to see Andy, Andrea, Stellablue and little Soren in their own lovely log home in Montana and not in the hospital.

August 19 – Solveig, Allistaire and I drive to Seattle

August 20 & 21- Allistaire is filmed by PBS having her exam with Dr. Pollard.  I am interviewed regarding why we chose to have Allistaire participate in clinical studies and what we believe the benefits to be.  Mom took the girls home and I get to visit with so many people I love including Chris and his mom and girlfriend.  He was going in for blood counts in hopes he was ready to have his tubies out.  I saw Shannon with little Jaxon who has down syndrome and AML and is coming up on his 7th round of chemo.  I saw beloved Stefanie who I met when it all began and who sweetly helped me learn the ropes and her little man Mason who is looking so good.  I saw Taylor and her mom in passing and had the joy of having two hours with Paige and her now 5 month old son Isaac.  I sat for about 10 minutes with Sally and Mary Elizabeth in one of the infusion rooms getting caught up.  I saw Jenna, who is over 60 days post transplant but who was in a for a fever, and her mom Julie.  We got to see Abi and her mom Diane only briefly because Abi has been having such a very rough time and at that point was about two weeks post transplant.  I spent hours with beloved Heidi, mom of Sam, up at their house in Everett.

Hematocrit 39.5, ANC 1365, Platelets 207.

Dr. Pollard says that her blood counts look good and even though her platelets seem low to me she says that she could have her platelets at this level the rest of her life and be perfectly healthy.

August 22 – I hoped to visit with Diane, Abi’s mom, but Abi was brought to ICU that morning for trouble breathing.  I head to my parents house to spend the rest of the day with them and Solveig and Allistaire

August 23 – The girls and I head to my brother and sister-in-laws house with a stop at my friend Angela’s on the way

August 24 – My sister-in-law, Briana and niece Lucy, Solveig and Allistaire and I enjoy the Woodland Park Zoo in Seattle

August 25 – The girls and I drive back to Bozeman.  I am so relieved to be home. I get word from Abi’s mom that she is on her fourth day in ICU but doing better.  She had to be put on dialysis and they pulled off 7 liters of fluid in 3 days resulting in her losing 22 pounds.  Pray that her new stem cells engraft soon and that she begin to get blood counts.

Here are a few of the views from our new home:

On Saturday Sten took off Solveig’s training wheels and in a matter of minutes she was off riding by herself.  We had a great weekend with the girls getting to play outside with cousin Haaken as Sten and his dad, Lowell, dug holes to put in a fence around the newly expanded garden.  The breeze blew through the aspens and I thought, wow, this is the life.