Okay, so I had to use a ridiculously dramatic title to tell of Allistaire’s first encounter with Blue Thunder.  By 11pm tonight Allistaire will be halfway done with the 6 days of this final round of chemo.  The first four days she receives 2 doses of Cytarabine, 12 hours apart.  Tonight at 7pm and for the next 3 nights she will also receive Mitoxantrone or Blue Thunder.

So far she is doing great.  She is still eating pretty well and is in high spirits.  Each morning when she wakes up she gets vitals done and eye drops and then sits in her chair and eats while she gets her morning chemo.  Then she gets to be unhooked from her IV and spends the next few hours making laps around the unit on one different bike after another.  She’s also a big fan of having me push her in a wheel chair.  It has been great to see all the sweet nurses again.  Many have commented on how much taller and bigger Allistaire is getting.

Allistaire is talking so much more and mimics anything she hears now.  My most favorite thing is that in the last few days she has taken to holding her head to the side, squinching up her shoulders and saying, “I wuv you too mommy.”  There is nothing better than her little sweet face tenderly telling me she loves me for the first time.  She also loves to have me lay my head down on her pillow with her when she goes to bed.  She usually gets quite concerned about my bangs falling down in front of my eyes and repeatedly attempts to push them aside.  She is such a joy!

Thank you for all your prayers.  There are 3 days left of chemo and I pray that God would allow each and every last leukemia cell to be found and destroyed for good!

At long last I am able to attempt to tell a story that has paralleled the story with Allistaire.  The quandary is how to do so?  Where do I begin?  How do I tell a story that in some way begins in my childhood, in other ways 10 years ago, 5 years ago, this October, this December, this January and the present?  I draw on what I’ve written in the past about how God has been working on this yearning in my heart.  Montana.  It’s simply beautiful to say and it conjures up for me so many deep joys and hopes.  Bare with me.

From February 2, 2011:

“Wow – who knew it has been so long since I’ve written anything.  Anyway, today has been one of those magnificent cold sunny days that if you’re not outside feeling the cold, can remind you a bit of a summer day.  As I sat just now at the kitchen table working on my BSF lesson (we’re at Isaiah 40), I saw the street lights flicker on.  It’s getting dark, but it’s still plenty light to see outside.  Suddenly, I remembered back to being a kid; the rule was you had to come inside when the street lights came on.  We hated it – we just wanted to stay outside forever and keep playing.  There was endless adventure to be had outside.  Such a life, in reflection, seems so utterly alive.  I looked out the window up at the small gray clouds slowly moving across the blue and I thought, how can my children possibly grow up with this tiny backyard and streets all around?  How can their souls drink deeply of the sweet, wet evening air, of playing in the woods with sticks and ferns, of riding bikes down dirt roads and playing a thousand games on a pile of dirt?  My mind then returned to what I had just read in my lesson – that according to the book of Isaiah, the answer to fears, doubts, questions, etc. is to be reminded of and steeped in the incomparable greatness of God.  When reading this it suddenly struck me as an astounding idea.  When I pray because of fears and questions weighing heavily upon me, I want real answers.  Pondering the greatness of God feels like something to get done so I can move on to getting some real, satisfying answers.  To meditate on the majesty of God seems like an attempt to divert me from what I really need.  And yet, what would it be like if I embraced this and sought satisfaction and peace in considering who God is, to be THE answer to my prayers.  Is it possible to simply rest knowing that God hears me, loves me, cares and is powerful enough, wise enough and good enough to accomplish His will which ultimately IS what I want?  As I looked out the window and longed for Montana, for the Meadow house to be our home, for fields and mountains and great vast skies to be my view and the realm in which my children’s beings grow, I asked God will we ever be there in Montana, will you keep us here in Kent?  How Oh God can you embed yourself and your wondrous, painfully beautiful glory here in this wretched place of strip malls and endless identical houses?  Then I thought, is God not able to craft them into the very people He has for them to be?  Is He not able to do this wherever on the earth they might dwell?  He IS able to bring us to the home of my dreams in Kelly Canyon and He IS able to form them even from dust, from sources that seem utterly insufficient for wondrousness.  Lord, my God, who calls to each of the stars by name, hear my cry to you, form in Solveig and Allistaire and any other children’s hearts you give me, form in them a deep, rooted, swelling love for you that they can never depart from.  See my children God and draw them to yourself I ask.”

From May 22, 2011

“Why is idolatry wrong?  Is it because God is actually unimaginably arrogant and cannot stand for us to put anyone or anything before Him?  We make Him in our own image when we view Him such.  Why is idolatry wrong?   Because ultimately, it is enslavement.  It is being tethered, bound to something that not only does not provide the life I want and demand it give me, but even further, it demands that I constantly, relentlessly give to it.  I am owned by what I sought to own.  Our pastor, Michael, today spoke about the 4^th commandment – to remember the Sabbath to keep it holy.  He said that the Sabbath is about rest – about ultimate rest for our souls.  The command is first given in Exodus with the rest of the 10 commandments but again is given in Deuteronomy 5 just before the Israelites enter the promise land.  God says, “You shall remember that you were a slave in the land of Egypt, and the Lord your God brought you out from there with a mighty hand and an outstretched arm.  Therefore the Lord your God commanded you to keep the Sabbath day.”  The Sabbath is a declaration; a proclamation that I who was once a slave am no longer. I AM NO LONGER A SLAVE.  The bars of bondage have been removed and I have been set free!!!  Observing a day of the Sabbath was insufficient to cause the Israelites to leave behind their bondage and relish in their freedom – in their rest from the hard work of being enslaved.  They actually asked God to allow them to return to Egypt, the land of their slavery, because they thought life had been so good there – after all they had cucumbers (Numbers Chapter 11).  The command to keep the Sabbath was a foreshadowing of the ultimate Sabbath to come.  And so Christ is the embodiment, the fullness of the Sabbath; of rest.  I am no longer a slave to sin.  My sin has been done away with and behold I enter a land of rest where I am no longer enslaved.  It is hard for one who has always been a slave and comes from generations of slaves to comprehend freedom.  Slavery is ever so much more comfortable because it is familiar and it feels safe in contrast to vast wide open spaces.   Freedom, like the frontier, is wild and uncharted.  Its paths are less worn and the way ahead is unclear.  Freedom tingles with danger.  How in the world am I to live unencumbered by a thousand voices that seek to keep me down, constrained.  In Christ, that is the answer.  I do not have to walk the road alone.  I, in my own strength and wisdom, do not have to know the way.  Christ is the way.  And mysteriously I am invited to be bound to Him.  Those other bonds keep me from life; this bond is the source of life.  “Come to me, all who labor and are heavy laden, and I will give you rest.  Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls.  For my yoke is easy, and my burden is light.”  The beauty of this mystery pains me to the core.  It undoes me.  As my heart labored to take all of this in, like ground whose dryness cannot fast enough receive heavy rain, it came to me that Montana has been for me an idol.  It was God Himself who turned my heart to long for that place.  And I have longed long for it.  I imagine its vast skies of blue and stars and storm, its endless fields of long grasses moving in the wind, gravel road after gravel road headed off in every direction to explore, its mountains springing up everywhere and I think here, this is the place where I can rest.  This is a place where one can sit in silence and ponder and mediate; to come to know oneself and the truths of life; unhampered by so much of the materialism and business of urban life.  In this place one can choose meaningful work; a simple life where you can see the produce of your hands; where you come to sense in your being the ebbs and flows of creation and the ground.  This is the sort of place I yearn for my children to grow up in, to play in and be formed in.  And then there it was, the thought so clear.  Montana has been my promise land – it is the place of rest I long for.  Every single thing I’ve said about Montana is true and yet it is insufficient.  It is just as insufficient as the belief that a beautiful body, a great house, a successful career, a high enough coolness quotient, etc. will bring me life.  It is just as insufficient as the belief that if God would just hurry up and sanctify me, fix me, make me right, make me righteous, I will have at last arrived.  None of these are the promise land.  None of these can deliver the rest every cell in my body groans ceaselessly to know.  Forgive me Father and thank you Father for showing me how I have once again stopped short of what it is you have for me.

John 10: 7-10

“Therefore Jesus said again, ‘Very truly I tell you, I am the gate for the sheep.  All who have come before me are thieves and robbers, but the sheep have not listened to them.  I am the gate; whoever enters through me will be saved.  They will come in and go out, and find pasture.  The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.”

Psalm 16:6

“The boundary lines have fallen for me in pleasant places; surely I have a delightful inheritance.”

So if it comes to pass that God someday leads us to Montana, I will rejoice.  But I cannot put my hope in Montana – not for myself nor for my children.  What then is my highest hope?  What is the jewel of inheritance I have the opportunity to pass on to these wondrous girls?  It is to know true rest in this life (wherever I live) which is quite simply and significantly, to know Christ.  To literally learn what it is to walk with Him.   How can I ever teach my children to walk in this way when I have only just begun to take my own first steps?  I remember when Solveig first learned to walk and I feared people would think I abused her because she was so often covered in bruises from her many falls.  So there it is – learning to walk involves lots of falls – aka lots of failing.  And all my life I have lived gripped by fear of failing oh look, just another way I have experienced slavery.  Yet here I am.  Standing in this great expanse.  I have the opportunity to learn to walk and I will fall but it’s sort of like all the stories where the hero can’t die, where unlike your child that shivers with fear at what will happen as the story unfolds, you know in your core good always overcomes.  But why is it that good always overcomes?  Is it even true?  And if true, how can I stand secure in it?  Christ has already died and paid my sin.  Christ has already risen and overcome death.  My ultimate enemies are truly already slain.  So I stand in this great expanse knowing that I will fall but I can only be injured, I cannot die.  I, who was once dead in my transgressions, a slave to sin, have been made free.  I have been joined with Christ in His death and so joined with Him in His resurrection.  I can fall and I will fall.  But, I will not die.  Here is freedom.  I felt the tiniest turning of it the other day; like the nearly imperceivable lengthening of the day as we head toward summer solstice.  But I detected it nonetheless.  I awoke knowing immediately something was wrong.  I racked my brain and then it came to me.  Sten had finished entering our receipts into the computer and we’d had the discussion about how yet again we really need to reign it in and we had less savings than it seemed we should have.  At first I felt myself going down the same worn path of guilt and feelings of hopelessness that things, I should say I, would never change.  How could I find myself in this same place again?  And then there it was – the lovely subtle shift.  Yes, this is sin in my life; sin that I commit over and over. But you know what?  It is sin that is paid for, dealt with, done.  It does not have the last word, it is not the ultimate power over me.  I am free to walk forward in the life God has not only offered me but given me.  I am in the promise land – I AM IN CHRIST.  It is one wee step forward walking with my Lord.  A year ago we received in the mail the King County property tax statement for the coming year which is based on the value of our home.  Another eighty something thousand dollars gone.  It was basically a letter informing me of how much deeper I was buried in the constricting hole of my home loan than I had known the moment before I read it.  There it was, the slaying of my hope that we could sell our house and move to Montana.  That was the first time I detected the shift God was working within me.  Oddly, I actually sensed myself trusting God, knowing that He is the One in control of my life – not the housing market, not the global economy, not the government’s policies, not the cost of oil determined by the happenings on the other side of the globe.  God, and not just God, but my Father – He is the one in control.  Did you know that God moved the island of Japan 13 feet when He caused the earth to quake?  Could one have ever imagined the wild-fire of revolt across the Middle East in the last several months?  What seems immovable is of no consequence to God.  He is in control.  He is at work.  I saw this morning that I had lost more of the hair on the top of my head.  I walked through the forest yesterday.  It was lush and quite literally bursting with eager life.  And there were innumerable fallen trees.  God knows the number of hairs on my head.  He is content to allow death and life to mingle – at least for now.  God is at work.  He is able.  He can be trusted.  Yes, I live in the already and the not yet.  It does not at all feel like the promise land.  Perhaps the key though, is to fix my eyes on Christ in whom I rest who is the very promise land, who is the very Sabbath, and not stop short by hoping to see the promised land unfolding around me.  Christ is at work bringing redemption, but it is by walking with Him that redemption will come about.  This is what I pray for my Lord.  Teach me to walk with you.  Help me, even covered in bruises, to be able to say to my children, and anyone else watching, this is the way – look there, it is Christ, He is the One in whom we hope, He is the One who invites us to walk with Him and promises to never leave us or forsake us.  Lord hear my prayer.”

Because this is a longer tale, I’m going to spit it between two posts.  This story in our lives has been a lot about waiting…so you’ll have to wait too. 🙂

For years Sten and I have been afflicted with “Sunday Night Depression,” that sense, as Sunday afternoon wanes into Sunday evening, that the relaxation and freedom of the weekend is soon to be replaced by the rigors of the week.  Last night was to be honest an exceptionally hefty dose of Sunday Night Depression.  I kept trying to remind myself that I should be excited to be so near the end and to be beginning the final round of chemo but I just kept feeling sad that our life at home was quickly coming to an end and I was feeling pretty grumpy pants about having to live in the hospital again.  I rushed around the house trying to pack bags for myself, Allistaire and Solveig who will be at my parents the next several days.  I tried to remember all the things that I would need to live life in a foreign land.  Even gathering my survival gear made me grumpy.  It honestly wasn’t until about 11pm last night in the last half an hour before bed that I thought, “Oh good grief, this is useless, just charge it Jai, just stop contemplating how life will be different in all sorts of ways you’re not happy about.  Put your head down into the wind and just go for it.  Don’t look to the left or the right or behind or before, just stride strong into the reality of the next day.”

That mental cheerleading worked pretty well until I saw our room; until I started trying to put things away in the tiniest room there is on the Unit, approximately 3 feet (literally) away from the single most noisy nurses station on the Unit.  I didn’t rush trying to put things away.  We’re going to be here awhile I kept reminding myself.  No need to rush.  I’d sort of encouraged myself into accepting the reality of the room until I discovered that the hanging curtain in the room only separates the room from the door to the hall.  This means there is no curtain that can be pulled between Allistaire’s crib and the bed-in-a-chair where I will sleep.  This means that Allistaire will not only be a few feet from me at night but she can see me directly.  I will have no privacy from nurses at night, nowhere to stealthily take out my contacts, nowhere to retreat from Allistaire’s observant little eyes that will undoubtably want to call out to me.  As the hours progressed the pressure on my left side increased and now resides as a constant ache in my face, neck and shoulder.

There is one lovely thing about our room, no, make that two.  There is one small window but it faces west out into a courtyard sort of area and there is a glorious flow of sunshine into the room.  There is also a view down into a play yard where kids can play ball.  Allistaire loves this and already spent some happy time standing in the wide window sill watching the kids, standing in the warm sun.

Once Allistaire went down to nap, I already yearned to escape from the hospital.  This was probably intensified by the utterly glorious warm sunny day outside.  With all of the cherry trees blooming everywhere, I assumed those in the Quad at U.W. (University of Washington) were probably out in glory too.  I decided to throw frugality to the wind and drive just up the road to park on campus.  A day like today is reason alone to be a student at UW.  The cherry trees were magnificent and it was as if all the world had come out to enjoy them.  I sat on the stairs overlooking the Quad and enjoyed my lunch in the warm sun.

I returned to Allistaire’s room 3 hours later expecting her to be up any time.  Apparently she spent the first hour of her nap chatting to herself and so she was still fast asleep.  In the subsequent hour I met two significant families.  The first family brought odd joy and the second brought, well I’m not sure, terror, fatigue, mourning, weariness, fear, soberness.  The first family has only been here a few days and are in the throes of trying to get an accurate diagnosis and wrap their minds around what is ahead of them.  The joy came when I learned they are from Bozeman.  To know the street that they live on, to imagine the vast green fields of the sod farms near their house, to know the building the husband works in, to remember those early days and all the unknowns and all the fears – it bonds you.  It is an odd joy to be of the help even if only in very small ways.  We live in a world where there is so relatively little we can do anything about and have any control over, and it is pure pleasure to be able to encourage or provide in the little ways that pop up.  The second family has a 6-year-old daughter who is here to be treated for AML, just like Allistaire, only this is 3 years after the first time she was here.  Like Allistaire, “she flew through Induction,” meaning she went into remission after the first round and did great.  Now, almost exactly three years later, her cancer has returned and she is getting more chemo and will need a bone marrow transplant.  My face fell as her father relayed these things to me.  It is like being punched in the stomach, like suddenly loosing your breath.  And then I continue down the hall and I desperately want to believe Allistaire is in the 50% that are still cancer free after 5 years and I know that no matter how much I want to believe this and no matter how much I love her, no matter how bright and cheery and wondrous is her spirit, none of this protects her from the possibility that this little girl’s reality may be Allistaire’s future.  How many times, I wonder, will I barely get my head above water before I find myself being tugged down again?  “I cannot handle that God,” I cry out silently.  I don’t want to be here and I don’t want to hear these stories and I don’t want to know the possibilities and I just want to have my life back.  I’m tired and it’s only the first day.

I guess it really is true that I must walk this life one single day at a time.  I know this but it is still so foreign to me, so contrary to my natural way of living life and I have to learn it over and over and over.  God gave manna for a day.  I must come before God each individual day and bend my knee to Him, to submit to Him each day and hold out my hands and look into His face and ask Him to help me this day, to be close to me this day, to show me the way through this one day.  This process started four months ago for us and I am still such a newborn to this new way of life.  I so very much want to learn the habit of this, to have it become ingrained in who I am, to not be startled over and over but to have it be the flow of my being to be ever looking to the Lord.  In elementary school I read a book about Pocahontas and will always remember the description of how Pocahontas and her people would greet the sunrise each morning and speak to the great creator.  I think of how Muslims stop and face Mecca three times a day to reorient themselves in prayer.  For most of my life I was fairly opposed to tradition and ritual, thinking it empty and void of sincerity; simply a thing to do because it had always been done.  Since attending our church here in Seattle, a delight for ritual has begun to seep into my being.  I have come to see that tradition need not be merely actions repeated over and over, but a powerful way to regularly reorient one’s ever drifting life to the things upon which we stake claim.  I have no grand plan, I have no idea what I will do but I hope to find a means of establishing tradition in my own personal life which will aid me in turning my face back to the warmth of my Fathers radiant face throughout the day.  I suppose I have an inkling of what this might entail but I wait on the Lord to show me the way even in this.

It’s 11:35pm and I only put Allistaire to bed one hour ago.  A little after 9pm tonight we were able to move rooms, right next door to our old fish room and to a room with a nearly identical configuration.  As I rushed to unpack for the second time today, Allistaire had vitals taken, detested eye drops given and her second dose of chemo started for the day.  I am so thankful for this room and for the speed with which God provided such a wonderful alternative to our original room.  I’m off to bed in hopes that I can somehow fall asleep and miss the next round of eye drops that will take place during midnight vitals.

“

We’re tired and a bit grumpy from an early morning, yet again, at the hospital.  But besides that – WE’RE GREAT!!!!

Allistaire’s bone marrow test came back: “in morphological remission,” which means that under the microscope, there is no evidence of cancer.  Of course the microscope cannot detect less than 5% but this is the extent of the testing they do at this point and we are so very thankful.

The results of the echocardiogram showed a shortening fraction of 31% which is the same as it has been four out of five times the test has been run.  The doctor believes this shows that this is Allistaire’s norm, and thus the “drop” from the one test of 41% does not accurately reflect an indication of damage to the heart.  If I recall correctly, she asked the echocardiogram tech what the norm is and he said that over 30% is the normal range.  The cardiologist said that for Allistaire’s age, anything over 28% is within the normal healthy range.  All of this to say, they feel good about going ahead with Allistaire’s chemo according to the standard protocol.  This means they will not be subtracting any medications or chemo treatments, nor reducing dosage.

Another victory was that Allistaire weighed in at 13.8 kg which is the highest she has ever weighed and back to her weight prior to getting sick.  Last night Allistaire ate an individual size container of yogurt, a small baby food jar of tender beef with spinach, a small container of applesauce, several slices of cheese and a handful of cereal.  We’re trying to pack on the pudge in anticipation of the oon to be drop in appetite.

I am so very relieved to be done with another round of chemo and to have yet another bone marrow test result behind us.  Life feels very strange right now – a bit like the suspended feeling of the beginning.  By the time we return to the hospital on Monday, we will have spent one solid month at home.  Even despite the fact that we returned to the hospital 12 days in that time, it has been wondrous at home.  Of course there are things like this very moment, sitting at the kitchen table, watching the wind move the trees and ring the wind chimes on the front porch, knowing that in half an hour I’ll drink my daily cup of 4pm coffee that I make myself with my happy little french press, knowing that Solveig is upstairs happily building a Lego house for her Lego horses while Allistaire naps – there are so many simple wonderful things about being home, but by far the best has been to have Allistaire and Solveig play together.  Nobody makes Allistaire as happy as Solveig.  Solveig is such an amazing big sister, even at her near worst, she is simply over-exhuberant in her affections or in wanting to add one more item to Allistaire’s dress up outfit, or in her perseverance in suggesting a particular game she is simply sure Allistaire must surely want to play.  Not having Solveig and Allistaire together will be the hardest and saddest part of our return to the hospital.

Last night I suddenly remembered to be anxious because I realized it had been two days since Allistaire’s bone marrow test and we had not heard anything.  Waiting continues to be something I resist and really actually despise, and yet it seems to continue to be true that waiting is in fact an opportunity.  Waiting is a pocket of time in which I am offered the opportunity to once again kneel in submission to my Father, to the God of the Universe.  In the simple activities that move me from one point in time to another, I pray to God as I brush my teeth, as I take out my contacts, as I lay down to sleep, as I rise in the morning and shower, as I drive the car.  Mundane tasks which carve out mental space for me to once again look the Lord in the eye and remember what it’s all about.  A few days ago I was organizing the chaos in our TV cabinet and came across a lone VHS Veggie Tales, “The Ballad of Little Joe.”  It is essentially a retelling of the story of Joseph of the old Testament and how his brothers despised him and sold him into slavery.  Eventually, after a series of events, including being thrown in prison, Joseph is given one of the most important roles in the kingdom and ends up being able to provide for the saving of his family from famine.  The summary statement at the end of the video goes something like this, “what man meant for harm, God meant for good.”  God meant for good.  Last night and this morning as I held my head in my hands, I asked the Lord again to help me cling to him, to hold my hands open, to receive what He might give and allow Him to take what He might take.  I asked the Lord again, to be near to me, to help me put my faith and hope in the truth, that come what may, God means it for good.

For now, it is Friday afternoon, and for another couple days we can hold the reality of cancer at bay and simply enjoy being together as a family.  The buttermilk is in the fridge waiting anxiously to be turned into the best pancakes you’ve ever tasted.  Our to-do list is blackened with heavily indented lines declaring accomplishment from top to bottom.  Yes, I’ll have to pack Allistaire and I up, but that can wait for Sunday night.  For now it is Friday afternoon on a windy exhilarating Spring afternoon.

Okay, well, maybe it would have been a wee bit more enjoyable to sleep in a little later this morning but there’s no complaints here!

By 7:50am we were headed out to the hospital this morning.  Just past Southcenter, the traffic signs said “4 mile backup into downtown – use alternate exits.”  I toyed with the idea of getting off at Albro/Swift and just weaving my way north, but then a long line at the exit convinced me to stay on the freeway.  I don’t know what the deal was but it was a relative breeze getting into downtown.

Once at Children’s we were delighted to nearly run into Piper and her mom.  By the way, I really did almost run into them as I was driving into the parking lot and then proceeded to stop abruptly upon recognizing them which yet again halted their progress.  Sorry, I was overcome with joy.  Later in clinic Piper sported some handsome faux facial hair with at least 3 mustache stickers (there was a huge bucket of them at the front desk).

Labs were drawn and Solveig and Allistaire spent the waiting time before the clinic appointment running up and down the hallway, hand in hand, laughing and laughing.  Another little girl we met, Katie, joined in the fun for a while.

Then we had vitals done and Allistaire had no temperature, a fabulous blood pressure and an increased weight!  She’s up to 13.4 which is up another .3kg since last Thursday.  She is still down .3-.4 from her weight prior to getting sick but the sister is making progress!

Next came Allistaire’s clinic appointment which was all great news.  The weirdo purple spot on her ear was so faded that I couldn’t even figure out which ear it had been on at first, her wee bottom zit is only a pale pink spot, her lungs sounded great, her ears looked great, her heart was great and she had stellar blood counts.  Platelets are a whoppin’ 483, hematocrit 34, white blood cell count 3.1 and then we had to wait for the ANC which is always the last bit of data to come in.  During this brief bit of waiting time we discussed Allistaire’s almost complete lack of cold symptoms and it was decided that she is no longer in isolation.  Yeah!  Then the moment we were all waiting for, an ANC of 837!  Not only was this high enough for a bone marrow test, it is above the 750 threshold for starting the next round of chemo.  This meant we were off to the procedure room.

Allistaire had her bone marrow aspirate and biopsy drawn, was given a flu vaccine shot and received 50mg of Cytarabine intrathecal chemotherapy.  This is a slight jump from what she has been given all previous times.  Now that she is two years old, they up the dose from 30mg to 50mg.  The nurse practitioner doing the procedure said everything looked great and felt great.  Allistaire woke fairly quickly and within a minute or two began her 30-45 minutes of roid rage attitude and then at about the point we were passing downtown on the way home she had settled down.

At home Allistaire was extremely chipper and sweet, downed a fair amount of cheddar cheese, a handful of Golden Grahams and 2 sippy cups of milk before she went down for a nap at 2pm.

So, a full day thus far and one I am both thankful to be mostly done with and so very thankful to have so much going well!  Our last hurdle before round 4 will be the redo echocardiogram scheduled for this Thursday at 10am.  Tracy, the nurse practitioner did not seem too concerned about things but said they would need to get the results from that test and have Dr. Pollard and the cardiologist review it.  We are scheduled for labs and clinic Friday morning and I assume I’ll probably hear results for both the bone marrow and echocardiogram at that appointment.

At this point we’re scheduled to admit next Monday, April 2nd.  This is actually 17 days earlier than the projected date based on the longest time frame per round.  I’m all for getting this show on the road!  Please pray about the possible heart issue and that Allistaire would continue to grow stronger and avoid any more sickness.  Tracy said that the flu is really just starting to come out and that there are a whole bunch of viruses hanging out on the clinic.  Please pray that our last days at home together as a family for a long time will be lovely and maybe even that we would get our old fish room back 🙂

Here’s our little silly cat Allistaire sporting her new mushroom menagerie shorts from Uncle Jens & Aunt Jo over her elephant footy jammies.  Wow do we love her!  Also, her bottom zit is on the mend and we didn’t have to go to the hospital this morning.  Our next visit is scheduled for Tuesday morning where if her ANC is up to 500, she’ll have her bone marrow test at 11:15am.  Please be praying, as before that they would be able to get a good sample.  The next echocardiogram is scheduled for this coming Thursday.

I learned this morning that Sara, of whom I have written, passed away last Friday, March 16th.  This is the link to the obituary.

Unfortunately I have not been able to be in contact with Sara’s mom, Janet, or her dear friend, Mattison, who has been at Seattle Children’s the last few months helping to care with her, so I’m not sure how they are doing.  I am pursuing contact with them and hope to visit them sometime in Butte where they live and Sara was from.

It was shocking to see this picture of beautiful Sara and to know that I never had the opportunity to know her.  The Sara I saw only on rare occasions was already very much being taken down by her disease.  Never will I forget an afternoon on the SCCA unit when the most forlorn wailing I have ever heard came from the closed bathroom 20 feet from where I stood, talking at the front desk with one of the doctors.  We all tried to continue with what we were doing; an attempt to lend privacy to a young woman who, in catching a glimpse of herself in the mirror, grieved the life being stripped from her.  I so wish I could have been there when the time came.  I so wish I could hug Janet and Mattison.  I get so frustrated at how limiting words are to convey such things and frustrated at how hard it is for my being to really take in such a reality.  We all know death is the frequent end of those with cancer, but it is always shocking that it really does come.  I spoke briefly with Andy, Stellablue’s dad, today and we both agreed that we know this is possible but we keep our heads down, taking one step at a time because it is the only way to keep going.

I just began a book today entitled, “Grace Disguised.”  It’s written by a man who lost his mother, wife and 4-year-old daughter in a car accident.  Two brief things have already stood out:  “…it is possible to live in and be enlarged by loss, even as we continue to experience it…I realized that something incomprehensible and extraordinary had just happened.  By some strange twist of fate or mysterious manifestation of divine providence I had suddenly been thrust into circumstances I had not chosen and could never have imagined.  I had become the victim of terrible tragedy.  I ransacked my mind for options that would provide a way out of the pain I knew intuitively loomed ahead for me and my family.  In that brief window of time, I exhausted all possibilities except one.  I realized that I would have to suffer and adjust; I could not avoid it or escape it.  There was no way out but ahead, into the abyss.”

It is an absolutely resplendent beautiful spring day here.  The sun has been out all day and the sky is fresh bright blue.  The cherry trees are blooming and the birds frolic in the air.  Death seems foreign and far off.  But my beloved friends Janet and Mattison and Sara’s brother, Josh, have already entered the dark abyss.  I pray dear God, that you would meet them there.  That in the blackness of their sorrow, in the mundane ordinary of life that goes on regardless, that you would daily and moment by moment show them your face; that somehow, in the midst of this awful time, your mysterious grace would fill them and they would indeed find their souls enlarged.

Again today, probably for the third time, I was told by a different nurse-practitioner how surprising it is that Allistaire did not get admitted last Saturday for her diarrhea.  Again it was reiterated how fast and how seriously sick AML kids can get when they do get sick.    I am very thankful that we have been able to stay home thus far.  While we are nearing the end of this round, there are still some big challenges.  What appears to be one bad zit on Allistaire’s bottom could be evidence of staph infection.  I’ve been given a strong anti-bacterial cream to apply with each diaper change.  Allistaire will have to go back in to be seen on Sunday if it has not improved by then.  Also, while Allistaire’s stools are firming up a bit and have been far less frequent, she still has a cough and a bit of a runny nose.  Thankfully she continues to sound great and her ears seem to have improved, but as long as she has symptoms, she must remain in isolation.  Isolation is not too big of a deal at this point.  It just means we wait for appointments in a different set of chairs, we are seen in select rooms and all the staff have to mask and gown up.  The problem will be if she has not gotten over this by the time we go in-patient.  If she is in isolation at that point, she cannot leave her room without being escorted by a nurse, nor will I be able to use the kitchenette.  Allistaire shut up in her tiny room all day for a month would be miserable for both of us.  Please pray that with her rising ANC (48 today) her body will be able to fight off this cold quick and be symptom free.

I come to the issue of greatest concern.  Allistaire had her fourth echocardiogram today.  Dahlia called this afternoon to say that there has been a significant change since her last echo was done.  In the simplest terms, the echocardiogram measures the hearts ability to squeeze – as in how strong is it or how well is it able to pump blood.  There are a number of different factors.  The two that they look at are the Ejection Fraction which has dropped from 60% to 45% and most importantly, the Shortening Fraction, which has dropped from 41% to 31%.  Because she is still recovering her blood counts and she is technically still anemic (her hematocrit is 29 today) we will wait until her counts recover more to do the test again.  Presumably, once she has produced the appropriate amount of red blood, her heart should not have to work so hard to pump blood.  There are really a number of concerning factors.  There is the obvious concern that there has been damage done to her heart.  In the immediate context, this could impact Allistaire’s ability to get the chemo she needs for this fourth round.  Mitoxantrone, known famously as “Blue Thunder,” is the main chemo of round 4 and is said to be the most powerful of all the chemo drugs Allistaire is supposed to get throughout her treatment.  If her Shortening Fraction were to fall below 27%, they would not allow her to get the Mitoxantrone for fear of severe cardiac consequences which are especially possible with this particular type of chemo.  As you can imagine, the prospect of heart damage and/or the prospect of her not being able to get one of the most important chemos to fight AML is awful.  I beseech you for your prayers about this.  The one possible bit of hopeful info with this is that when I asked for her baseline numbers from the echocardiogram that they did prior to treatment (on Dec. 10th), her Shortening Fraction then was 32%.  On her second echo on January 16th, it was 31%.  Today it was 31%.  Only on on the echo after round 2 on February 16th was it 41%.  All of this to say, that as Dahlia looked up these past numbers, she suggested that perhaps that this was good news and that Allistaire’s norm is around 31%.  I am hopeful that this is the case.  She will be discussing this with Dr. Pollard and the cardiologist.

Lastly, while Allistaire’s bone marrow test is still currently scheduled for next Tuesday, I learned today that her ANC must be 500 this time for them to do the test.  I’m not sure why the higher numbers but this just means that while we will still go in for labs and clinic on Tuesday, if her ANC is not high enough, the test will be pushed back until Thursday or Friday.  We also went ahead and decided to push back her admit date until Monday or Tuesday, April 2nd or 3rd just so that she can have a few more days to raise her blood counts, get over this cold and for us to have the weekend together.  If her counts are simply soaring, it is possible to have the bone marrow test on Tuesday, clinic on Friday and an admit on Sunday.  They just have to wait to get back results from the bone marrow test before admitting and she must be seen within 72 hours prior to being admitted.

Friends, I cannot tell you how much your prayers have meant to me.  I am constantly astonished that Allistaire continues to be fever free.  I’ve been amping myself up for the big last round but now I feel added stress due to Allistaire being sick and the possible issues with her heart.  Please pray that God would continue to sustain her wee precious flesh.  As has been the case, Allistaire simply gets cuter and cuter, more and more hilarious and more and more dear to us.  I cannot tell you how many times in the past two weeks Sten and I have just looked at each other in wonderment at what a little character she is.  Now that she is talking so much more she just holds tighter to our hearts.  I love my little girl more than I can say and I desperately want her well and without permanent damage.

I leave you with these words from the results of Allstaire’s last bone marrow test (I just requested these printouts today), as a testament to what the Lord as already done, showing his kindness and provision in our lives:

From the Flow Cytometry Test:

“Bone marrow, aspirate: No abnormal myeloid blast populations identified.  There is no immunophenotypic evidence of residual acute myeloid leukemia by flow cytometry.”

From the Bone Marrow Microscope Finding:

“Diagnosis:  Right Bone Marrow Aspirate and Biopsy: Acute Myeloid Leukemia in morphologic remission”

Who knew?!  So many great things!  Allistaire slept all the way through the last night without painful crying.  I woke her up at 8:30 to head to the hospital and she did have a diarrhea diaper but the bottom’s still looking good.  We got to the hospital in time for labs and then hit up Starbucks while we waited for her clinic appointment rather than going for a dressing change as scheduled.  Apparently there was some sort of disease contamination that required special cleaning before we could enter.  We headed back to clinic and had about a 20 minute wait.  This is one of the best parts of clinic – you get to see all the old beloved faces.  We had the joy of seeing little Annabelle and her mom and dad that we haven’t seen in two months.  She is much improved by all appearances and they await scans in a month that will tell them how effective the chemo has been.  I almost didn’t recognize little man Mason because of his slimmed down appearance which shows off his handsome face.  It was great to see he and his mom, Stefanie, for a few minutes.  Then we saw Shannon with her very little guy, Jaxson.  On our way in to get vitals and weight we ran into Sam’s mom, Heidi, who we miss so much.  It is a strange and wonderful thing to be bound in this way to others who have or are fighting a similar fight with a similar foe.  The taunting thing is that we are in isolation because of Allistaire’s cold which means we have to keep a sizable distance and there just isn’t nearly enough time to chat.   Nevertheless, it is so delightful to see faces that we love and mean so much to us!

Our nurse practitioner, Tracy, examined Allistaire and says it looks like she’s improving but we are not totally out of the woods yet.  She affirmed the concern of the ER HemOnc fellow who was considering admitting her.  While I really don’t understand it myself, obviously from severe lack of knowledge and experience, the chemo regime for AML is just so incredibly harsh that it suppresses the immune system far more than most other chemos.  Also she said that when AML patients do get sick, they can often get severely sick extremely fast.  The threshold for readmittance is extremely low.  Apparently, only up until the last few years, AML patients had to stay in the hospital the entire time.  I cannot tell you how thankful that we have had the opportunity to be at home these past 2 weeks!  We are elated that her ANC popped up to a whoppin’ 13 today!  Her hematocrit is up to 30.7 and her platelets nearly doubled going from 45 to 81.  It looks like we’re on the upward swing which is totally amazing to me!  We are actually scheduled to have Allistaire’s next bone marrow test next Tuesday and to readmit for round 4 on Friday, March 30th.  Of course this is all contingent on Allistaire’s counts as she has to have an ANC of 750 to start her next round.  It is just surprising to me because I had in mind that she would start round 4 sometime between April 7 – 14th.  This would put us a week or maybe even 2 ahead of what I had been thinking.  While I’m not super excited to be back in the hospital for a long time, I’m ready to get this thing done!

Thank you for all of your prayers for so many things.  Please keep praying for the diarrhea to disappear all together and for her little bunzers to stay healthy and for no fevers.  Today she ate a tiny bit better – she ate 2 1/2 pieces of cheese along with a bit of cereal and probably about 4 sippy cups of milk.  I’m really praying and hoping her appetite will increase because she lost almost one kilogram since her appointment last Thursday.  The nurse-practitioner said we’ll give her a chance to regain some of that lost weight but that we will need to keep a close eye on her and problem solve if she keeps going down.  What did encourage me was the fact that she did not fight me to get into her chair to eat and while she did to eat much, she was in a very chipper mood.  Before and after dinner, she and Solveig had lots of fun together and she seems to have some energy returning.

Last but not least – sorry Nick for the alarming blog post title yesterday.  Like I said, I’m prone to hyperbole 🙂