Monthly Archives: September 2013

Day + One Hundred and One


IMG_4982Under ideal circumstances…ideal circumstances being you’ve survived the napalming of chemo and radiation and the attacks of Graft Versus Host with your cancer still no where in sight, you get to start the transition to home come Day + One Hundred and One.  But we all know Allistaire’s wretched cancer peaked its ugly head around Day + 50, showing up as a mere “point zero one percent.”  That’s all it took to cause us to swerve off the desired course down an unknown and often dark road.  But here we are, quite a bit further down this road of unknown distance and today we have ALL good test results.  Yeeha!  Such joy, joy, joy, joy!

The past eight days, like the past three weeks, have been simply bursting with activity.  Friday: Blood draw, clinic visit and bone marrow test.  Saturday and Sunday: round two of Azacitidine chemo.  Monday: early morning lab draw, longest echocardiogram ever and chemo.  Tuesday: Allistaire throwing up seven times in 6 hours starting at 2am, lab draw, chemo, diarrhea, clinic, lunch with grandpa, seven loads of laundry.  Wednesday: more diarrhea, more laundry, informal clinic, chemo, Jai throws up four times in 3 hours.  Thursday: early morning  consumption of contrast in prep for CT scan, wait two hours at hospital for scan while I feel awful and Allistaire plays on iPad, CT scan, chemo, long nap, headache.  Friday: Everyone feels great, chemo, clinic and good news!

It has been quite a week and one I am seriously thankful is behind us!  Today Allistaire wrapped up all of her Day + 80 assessments which primarily look at her level of GVHD, with pictures being taken of her skin and Natalie, the PA, having her demonstrate a variety of positions to look for GVHD in the joints.  While next Friday looks like the day when the doctor will officially go over all results and a sort of summary of where Allistaire stands, I believe I’ve been given all the results so far.  As mentioned before, there is no evidence of GVHD in her eyes or mouth and her flexibility is excellent.  The urinalysis that tests for certain proteins that can evidence decreased kidney function came back perfect.  Her liver function tests are all perfectly within the norm.  Her echocardiogram showed that her heart function is stable since the time it was tested prior to transplant.  At that time of testing it was improved since being given Enalapril and I think it is within the normal parameters, but certainly no additional damage.  The chest x-ray was great with no evidence of infection.  Her CT scan, which she did for the first time without sedation, was excellent.  There is no sign of the two small fungal nodes which were once on her lungs, no evidence of any issue in the lymph node which enlarged significantly with cancer at the time of relapse but which was radiated, and the area on her back was “improved.”  The last CT (prior to transplant) said that the area on her back was decreased in size from the previous scan and at that point the doctor believed the remaining “haziness,” to simply be scar tissue, so all looks good there.  The level of iron build up in her is at 1,000 (not sure of units) whereas the norm is 180.  Because of all the transfusions Allistaire has had, iron builds up, however, apparently this level of 1,000 is really quite good given her circumstances.  The PA said they have kids with levels up to five and eight thousand.  Thankfully, Allistaire has not needed a single transfusion since transplant and because her marrow is producing blood, it draws from the body’s iron stores to produce red blood, thus this number will continue to diminish.  If necessary, they can also do some modern-day blood-letting where they suck off some of her blood (through her Hickman), causing her marrow to be stimulated and pull out more of the iron stores to replenish the red blood.  Her chimerism tests have also improved to completely perfect!  This means that 100% of Allistaire’s peripheral blood is being produced by the donor marrow and 0% by her old marrow.  There are three blood lines tested and about a month ago they were 97%, 100%, 100%.  On Tuesday morning, just as Allistaire’s throwing up was subsiding, Dr. Delaney called to relay the good news that the Flow Cytometry from Allistaire’s bone marrow showed zero percent cancer.  This morning in clinic we received the cytogenetic results which were also perfectly normal, with no evidence of the MLL rearrangement or any other mutation.

This marks Allistaire’s third remission from cancer.  As the nurse put it today, perhaps it should be considered a “fragile remission.”  We know with stinging clarity that remission doesn’t mean the beast has been slain, but it has been severely wounded at the least, and for this we give abundant joyful thanks!  I am just so thankful for all the good news, for all the evidence that shows that Allistaire’s body remains amazingly strong and still able to fight!  I am so humbled by this gift because I know there is absolutely no guarantee of the ability or opportunity to continue the fight, to walk forward.  We know not what any moment holds, wow have I learned that.  Any sense of predictability has been utterly stripped away.  But you know, predictability itself can be a barrier.  It says – this is how things should go and while I have lived much of my life with things going pretty good, lately it’s been pretty rough and for many, many in the world predictability means invariable hardship.  So like statistics, predictability is being tossed on the winds, whipping away from us.  Statistics say Allistaire should basically, never have gotten AML, but she did.  Statistics say she most likely will die from this disease, but she might not.  Who cares what statistics say?  They have no power over our lives.  Yes, the scientist must pay attention to the numbers to evaluate the risks and the benefits and to advise the way forward, but I am the mom who walks with this girl hand in hand, and we will keep living each day asking for more life, partaking in and delighting in and being sustained by the life daily given us.  The Lord directs our path, not numbers, not likelihoods, not probabilities, not the best-in-my-view, but according to the glory of His beauty and goodness.  Good grief I don’t know what He’s up to.  Some days it’s the worst news and sometimes our hearts are so lifted with joy at the tangible life He has extended.  The real battle is to constantly re-orient my heart to Him.  The battle is to constantly yield and say out loud – the goal, the direction, the hope of life is to know the living God.  Physical life and health are wonderful but they are not the end goal.  The battle is to say, by whatever means you deem fit Lord, open my eyes more and more to who You are.  Terrifying.  Exhilarating.  Wide-open-ended possibilities.

“Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.”  Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes.  Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”  James 4:13-15IMG_4937 IMG_4938 IMG_4939 IMG_4942 IMG_4947 IMG_4961 IMG_4967 IMG_4968 IMG_4975 IMG_4980

Home, Sweet, Beautiful, Beloved Home


IMG_4784When Allistaire’s relapse after transplant was confirmed, Sten and I asked the doctor about the possibility of bringing Allistaire home for a visit.  We were told, “No.”  From what I understand, the reasoning for this is because of how little is known with this chemo, Azacitidine, in pediatric patients post-transplant.  It has rarely been given to children and they have seen flaring of GVHD in adults as blood counts begin to rise toward the end of the four-week chemo cycle.  The potential for dangerous flaring of GVHD coupled with an extremely suppressed immune system, due to both the realities of transplant and chemo, made the risk to leave the safety of the medical care here in Seattle too great.  We easily consented to this guidance – we have worked far too hard and long to protect and care for Allistaire, to take unnecessary risks now.  My sweet parents, however, wanted to support me in going home for a visit and prepared to take on learning more of the details of caring for Allistaire including caring for her Hickman Catheter, and following the detailed med schedule and dosing.  At first I resisted their suggestion of going home for a visit.  Out of sight, out of mind…sort of.  The thought of going home felt both like a glorious relief and something to stuff away.  Ever since the days I was forced to eat lima beans at dinner, I have learned “delayed gratification.” Slam down the nasty packets of chalk (a.k.a. lima beans) and get onto eating the good stuff.   Sure, pretty things at Anthropologie and Mexican Cokes can often cause me to forget this important life lesson, but in many ways it is one of the most powerful directors of how I live my life.  I mean, really, being a Christian is ALL about delayed gratification.  “For the joy set before” me, I endure.  Being separated from Solveig and Sten and this daily grind of cancer-fighting, is all about doing what is necessary, that we might eventually achieve the desperately hoped for gratification of being reunited as a family, full of life.  To give into going home felt like eating a bit of the most decadent, craved for food you can imagine, only to find it followed by a plate full of nasty lima beans.  I wondered how much harder it would be to endure this pseudo-life in Ron Don, if faced with the tangible glories of Montana, my own home and my two sweets.

Now that the road stretches out into the blackness past October, I relinquished, and began to plan a trip home.  But what nobody knew except our immediate family, is that I decided to push for Allistaire to go home for a week.  I asked again, and with hesitation, was told, “maybe.”  It’s reasonable you know – I mean, we are talking about Montana – what do they have out there anyway?  Still probably making people bite on sticks while their mangled leg is doused with some booze and sawed off with the same saw that just cut through that tree yonder.  That’s not so far off in one way – less than a year ago, the Big Sky State could boast its first and only pediatric oncologist.  We’re a little short on the super fancy stuff out there in the land of glory, but a good pediatrician we do have.  I emailed our sweet Dr. Ostrowski, and parroted back the questions I was told to ask, questions I myself didn’t fully understand, and in the midst of her own camping trip, she responded with as much detail as she could out there in the woods and promised to get back to me quickly with full details.  So began the process of assessing the medical support available to Allistaire in Bozeman and the myriad of details connected with getting a little baldy-top back to her homeland.  The most challenging component was figuring out how to get home.  Should Allistaire spike a fever, which would very likely be a sign of infection, she needs to ideally be on antibiotics within 30 minutes.  This protocol is twice as fast as the standard at our home hospital and would require specific pharmacy instructions, not to mention a pharmacy and hospital to administer the needed meds.  One of the best parts of the 700 plus mile drive between Seattle and Bozeman is the wide open stretches of wilderness which is conducive to the refreshing of the soul but not to speedy medical attention.  So while driving offers flexibility of timing, it is rather risky.  The obvious answer was to fly home as it is only about an hour and a half flight.  The down side of flying is that you are stuck in a small space with some potentially sick folks hacking up a lung – not really optimal to the immune suppressed.  On top of it, the doctor was willing to let Allistaire go only if her ANC (Absolute Neutrophil Count) was high enough and seemed relatively stable.  This meant it needed to at least be over 500 and not dropping.  So two weeks ago I was rushing around taking Allistaire to clinic and her additional Day +80 appointments, gathering all the random medical supplies, refilling prescriptions, hoping the TSA would let me bring a ridiculous amount of strange fluids on-board, communicating with Dr. Ostrowski about preparations for Allistaire’s care in Bozeman, trying to arrange flights, all the while watching Allistaire’s ANC fall and fall yet hoping desperately it would stabilize.  I went from willing delayed gratification, to raving hunger for all of us to be together at home.

“Can you check to see how many seats are left on the flights?,” I asked the lady at Alex’s Lemonade Stand, a non-profit which helps with travel costs to and from treatment for pediatric cancer patients.  She said there were only one to three seats left and I asked her to please go ahead and book the flight with the ability to cancel if necessary.  That was going to cost an extra $100 dollars.  Good grief, they were already paying nearly $1,400 for the flights, I pleaded for her to pay the additional cost to secure the flight and not end up losing a day at home.  Allistaire had not been home in seven months and there was one tiny, seven-day window of time before her next bone marrow test and the beginning of the next round of chemo, to squeeze in a visit home.  The deal was that clinic occurred Thursday morning and we were insanely, trying to fly out that very night, if her blood counts were high enough. Wouldn’t you know it, even though we got there early to have labs drawn, they were taking forever to come back.  We met with the PA and doctor and all the while the nurse madly kept hitting “refresh” on the keyboard in attempt to force the blood counts to materialize.  At last the number came up: 1,800 – a perfectly fat and happy ANC and a joyous cheer that we were going home.  I sat Allistaire’s sweet face right in front of mine and told her that very night we would be on an airplane to go home for a visit to our house in Montana with Sissy and Daddy.  Her jaw literally kept dropping as she repeated everything I said back to me in the form of a question, to which I answered, Yes, Yes!

Then there was that moment that we, the very last people off the plane, in an airport nearly shut down near midnight, rounded the corner and Solveig caught sight of Allistaire.  She suspected I was coming for a visit but could not have imagined she would be seeing Allistaire.  Solveig came running and they knocked one another over in bear hug in the middle of the airport floor and Sten and I cried as we approached each other and could not stop as we held one another.  How I long to return home at last with a little girl rid of cancer, but oh, how sweet this was.  When we arrived home and I stepped out into the black night I felt like Allistaire that first time she was released for a few hours out of the hospital after being trapped inside so long.  On that day she cried out, “A tree!  Look mom, a flower… a bird.”  On this night I looked up and it was as though I had never really seen stars, so beautiful and innumerable were they.  And this is what last week was like – everything more glorious and precious and delightful and beautiful than you could imagine and every little thing I wanted to savor.  Just to sit at the kitchen counter and eat pancakes together was gift upon gift.  To watch Allistaire and Solveig roam the house, building forts, making up games and playing dress up, summed up my greatest earthly joys.  I cried a lot.  I cried for joy and I cried in sorrow.  The calendar was still turned to February.  There is a way in which life just stopped.  There were ways in which it almost seemed that someone had died and all had remained just as it was on that last day of life.  There were also ways that evidenced the passing of seven months without my being there.  Time both permanently stalled and kept on relentlessly moving forward with no regard to the missing.  I ended up doing far more cleaning and organizing than I would have thought would consume my time.  But there was a way in which this was pleasure.  It was odd joy to take hold of elements of our home that showed the neglect of my absence.  Sten has done an amazing job maintaining his responsibilities at work, keeping up our house and caring for Solveig.  Nevertheless, it is more than any one person can handle and there are tasks which are solely mine.  I think at the core I saw so clearly how my life is overflowing with abundance and joy and it really is these simple bits of just living and dwelling with one another.  Life is rich, so, so rich it is staggering.  How easy it is to be discontent and want more, more, more.  And I still want to change the color of the house and get rid of the mustard colored bath tub and drop ten pounds, but wow, life is really so good.  So good it made me cry, over and over.

We had a wonderful packed week.  The first night we were home was the only night we had alone as a family.  The next six nights were filled with getting together with each of the brothers and sister-in-laws, the family as a whole, date-night for Sten and I and dinner at the Shraugers who are home at last with a little NED boy (NO EVIDENCE OF DISEASE in Caden!!!!).  Solveig and I spent a day going to a few antique stores and eating at her favorite spot out on Gallatin Road, The Coffee Pot, where she delighted in her much longed for cinnamon roll.  Our big family dinner up at the parental-units house, was just as it has always been – Lowell’s great steak and peppers, ridiculously garlicy garlic bread, a crazy good green salad thanks to Jo who finally made enough and a well thought-out, love imbued dessert by Jess.  We drank wine and amazingly tasty drinks by Sten and let the kids run wild in the rec room downstairs.  It was a wonderful time all together.  Allistaire did great and we faithfully flushed her lines each day, gave her meds and changed her caps and dressing.  She even played outside for a few hours with Solveig and supposedly managed to not touch rocks, dirt, sticks, grass or trees (all containing dangerous fungus).  On Tuesday she went into have labs drawn and to be looked over by Dr. Ostrowski.  Allistaire looked great and her GVHD was pretty much unchanged.  A sweet nurse, Alicia, from the adult cancer care unit, came over to draw blood from Allistaire’s Hickman, much to her relief.  Her first words as we walked up to the hospital in Bozeman, were, “Am I going to get a pokey in my hand?”  It was such a gift to spare her this terror.  Strangely though, her platelets had risen from 137 on Thursday in Seattle to 317 on Tuesday in Bozeman.  The docs in Seattle requested labs to be redrawn on Thursday which resulted in platelets of 525 and an ANC that had dropped to 750.  There was some concern that she might be getting sick, regardless of there being no outward indication, but it was decided to hold off on prophylactic antibiotics.  On Friday back in Seattle, her ANC was up to 1,670, platelets down to 334, hematocrit a shining 40 and her liver function tests were virtually, perfectly normal (AST 31, ALT 42), and still no indication of illness.  Our last bits of time together with just the four of us involved a lovely walk down the driveway (.4 miles long) and then down Kelly Canyon Road a bit.  It was, all in all perfect, aside from cancer.  It was a spectacular fall day with bright sun, blue skies and cool breezes.

Yes, there are more than a hundred-thousand things I could want on this earth, but really, this right here is all I really want.  I want this simple beautiful life with the four of us.  It is decadent gift from the Lord but at the same time I know this isn’t what He promises, this is not ultimately what life is about.  I do believe it is about love and relationships and I have been bountifully given these on this earth, but when it comes down to it, right down to the bedrock of life, ultimately this life is an opportunity to taste of the Lord and see that He is good that we might dwell in relationship with Him eternally.  Second to this is the hope that God’s beauty and grace and truth might be seen through this one weak life, that others would be drawn to drink deeply of His heart and know Him truly.  So I’ve devoured my delicious time at home, and I savor its sweet taste in my mind as I survey various moments over the past week.  But I choose to look for more than lima beans in the days ahead.  It was hard returning to Ron Don.  It was hard that it felt so normal to be here and I heaved sobs as I considered the possibility of the days ahead.  I did force myself to ask Dr. Ostrowski out loud about hospice in Bozeman, but I  CAN NOT imagine bringing this sweet, wild-cat of a girl home to simply die.  I absolutely don’t know how to do that.  And more, the truth is, I don’t know how to live our life without her.  I see Solveig’s cheery little face in my mind and I mourn and mourn that I do not know how to conjure up the joy and silliness that Allistaire offers and that, in the face of death, I fear I will utterly lack.  I imagine a walk down the road with only three of us and know I can not match the enthusiasm for the rocks along the side of the road with which I long to greet Solveig.  I fear that with the loss of Allistaire, so very much will be taken from Solveig.  Perhaps this is my greatest fear, my greatest sorrow.  What will become of her?  Who will this solitary Solveig be?  I am already so very entrenched in soberness and sorrow, I simply don’t know how I can care for my beloved Solveig the way life with Allistaire fills the air with ringing joy.  I ask the Lord, Oh God, how much will you take, how deep will the cuts go.  The problem with having an imagination is that you can imagine.  The problem with being empathetic is you can empathize.  It is easy for me to imagine a life without Allistaire and it cuts and burns.  What I can’t imagine is how the Lord will redeem this.  “How are you going to bind up this mess,” I cry?  How are you ever, ever going to make this ugly – beautiful?  How will your transfigure this woe?  I yell out into that steely grey wild stormy evening sky, and plead for Him to make His face seen.  Oh God, Oh God.

He doesn’t answer me as I want.  I don’t hear His voice.  There are no visions.  But there are four things which hold me firm in Him.  There is first the glory of nature around me that everywhere declares His presence, His majesty, His beauty, His power, His infinitude.  All creation shouts His presence.  Then there is His Word.  Oh there’s plenty in the Bible that seems odd and I don’t understand and there is plenty that defies my logic and whose wisdom and beauty so clearly dwarfs my mind.  There is a story there that is so hauntingly “other,” that I know it not to be fiction, but THE story, the meta-narrative.  The third binds the past with the present.  There are men and women in the Bible, in history and in my present life whose lives declare the working of a good God.  There is the communion of Spirit.  And there, that undefinable, indecipherable part of my innards, that has heard the Lord, Creator of the heavens and earth – the thing is, He has spoken to me.  Over and over and over, He has guided my heart and mind.  I often consider what I believe and I can see that it seems mad, stark crazy.  But then I consider too a world where all that the Bible claims as true is withdrawn and all other possibilities rise up, and I see that as crazier still.  Sometimes I stand with Peter and answer the Lord.  Sometimes I say, Lord, this is a hard teaching – it is hard to accept that You, who could heal Allistaire, may choose not to.  It is a hard teaching that this life is fleeting and does not begin to compare to worth and glory of the life to come.  My eyes tell me otherwise.  My heart so bound to Allistaire in this life, despairs of this severing.  Yet I have seen enough with my fleshly eyes and the eyes of my heart to see that there is more than what is tangible.  I have begun to taste of mysteries, and I cannot turn away, not because I am forced, but because I am compelled.  I am being wooed by the God of the Universe.  So daily I hand over the woes that can fill my imagination and I battle to take hold of the day given.  I turn my attention to the sweet dimpled face before me.  I attend to the work at hand and I rejoice, and wrestle, to let God be God, though He will be regardless.

Allistaire has completed three out of seven doses of Azacitidine.  Today she also had a blood draw for lipids and cholesterol and an echocardiogram.  In addition to chemo and clinic this week, she will also have a CT scan, with contrast, to look for cancer and track the status of the fungal nodes on her lungs.  As it so often seems, in mere days, my little world might sway dramatically again as we await results from her bone marrow test and the CT.  I take comfort in knowing, He has gone ahead of me and all is known to Him and all is carried and cared for by Him.  Lord show me your mercy, show me your grace.

On hearing it, many of his disciples said, “This is a hard teaching. Who can accept it?”…66 From this time many of his disciples turned back and no longer followed him.67 “You do not want to leave too, do you?” Jesus asked the Twelve. 68 Simon Peter answered him, “Lord, to whom shall we go? You have the words of eternal life.69 We have come to believe and to know that you are the Holy One of God.”  From John 6

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Mountains Beyond Mountains


5809192575_333e2d6446-1I don’t know what year it was, only that I was a teenager.  My family was on our annual summer camping trip, this time to Jasper National Park in Canada.  The views that my eyes took in on that trip are some of my greatest treasures.  One night we were camping near the Columbia Icefields.  Probably in an attempt to get out of cleaning up after dinner, my brother and I headed out to explore.  It did not take long for us to realize that we were on a trail that we could not turn away from, but which did require the accompaniment of our dad.  So the three of us set out into the evening air on a steep trail that climbed the back wall of a canyon. When at last we rose up out of the wall of that mountain, we came out onto a vast plateau.  I will never forget the spectacular sensation of being utterly dwarfed by the expanse of space surrounding us, the absurd mass of the mountains spreading out around us and the unspeakable beauty.  As the sun was going down, the light turned warm pink and yellow and seemed to literally fill and splash out of the rock bowl of the mountain face to our left.  Before us, one hundred and eighty degrees of mountain peaks repeated endlessly to the horizon.  It seemed almost ridiculous to call what we were looking at, a mountain range, for there was literally nothing but mountains.  Mountains consumed the entirety of the view.

I am nearly to the end of the fantastic book, “The Emperor of All Maladies,” and last night read these words: “Gene by gene, and now pathway by pathway, we have an extraordinary glimpse into the biology of cancer. The complete maps of mutations in many tumor types (with their hills, valleys and mountains) will soon be complete, and the core pathways that are mutated fully defined.  But as the old proverb runs, there are mountains beyond mountains.  Once the mutations have been identified, the mutant genes will need to be assigned functions in cellular physiology.  We will need to move through a renewed cycle of knowledge that recapitulates a past cycle – from anatomy to physiology to therapeutics…We will soon know what the mutant genes are.  The real challenge is to understand what the mutant genes do.”  My view of those endless Canadian Rockies came immediately to mind.  Every single mountain I beheld, individually, would require great strength, skill and endurance to scale.  But what would it be like to come upon such a landscape and to at last rise to the top of the mountain you had so mightily worked at overcoming, to simply see infinitely more such daunting pillars crowding your view?  There is a way in which learning more about cancer has been quite depressing, exhausting and overwhelming.  I also read last night about the hypothesis of their being cancer stem cells.  “These ‘cancer stem cells’ act as the persistent reservoir of cancer – generating and regenerating cancer infinitely.  When chemotherapy kills the bulk of cancer cells, a small remnant population of these stem cells, thought to be intrinsically more resistant to death, regenerate and renew the cancer, thus precipitating the common relapses of cancer after chemotherapy.”  What a nauseating thought.  How utterly terrifying.  How daunting because, man, what are you going to do if the chemo just leaves the most hard-core bad guys behind to reproduce infinitely – then what are you up against?  Sometimes as I look out at those endless, cancerous mountain peaks, I feel terror because finding a way to keep Allistaire alive feels impossible, considering how many there may still be to scale.  I don’t just want the doctors to know what mutations her cancer cells have.  I need them to know that the mutated genes do NOW and to figure out a way to stop or undo those deadly pathways NOW.    But then there is also something else at work.   Something that makes me smile and laugh out loud.  Like a dork, I literally cheer in Starbucks as I read on.

These days, I am constantly learning new words.  What usually happens is that something is said in our clinic appointment by the doctor or I am handed a pathology report and there will inevitably be at least one word, if not numerous words, that I have never heard of and cannot even begin to crack.  I am forced to turn to my good friend, the google search.  I start with one word but often only moments later find it necessary to table the understanding of the original word, that I might explore one of the words used to define or explain it.  On and on and on it goes.  I might start with one word and end up looking up twenty words just so I have a shot at understanding the first one.  The other day Dr. Pollard explained to me in an email that, “The TSLPR staining was done to see if Allistaire would be eligible for a study of a JAK inhibitor-  you have to have TSLPR staining (thymic stromal lymphopoietin receptor TSLPR; encoded by gene CRLF2) to even be eligible- she  wouldn’t qualify with the small amount of disease she has presently (need >20% to be eligible) but wanted to see if it might be an option for the future.”  Uh what?  Didn’t quite catch that.  So what’s a girl to do?  A google search of course.  So, what is a JAK inhibitor?  Just try it.  See what happens.  Look it up and try not to read one sentence before you can understand all of the words in that sentence and then you can proceed.  It doesn’t take long before your eyes start to glaze over and you realize all you have done is walked up to the face of a mountain and picked up one big rock.  People sometimes say to me that I seem to have a good handle on the science regarding Allistaire’s disease.  The is the most laughable thing I can imagine.  To say I have a good handle on it is like saying that I have a good hold on Allistaire as I grip one hair on her head and she runs full force away from me.  So how does facing this infinite expanse of looming mountains do anything but bring me to my knees in quivering fear?  Well, it does!  I fall down on my knees, in fear of…God.  At first it really is just straight-up in my face, black fear that sort of rises and builds and swells around me until I see nothing but choking fear that demands to rip the air right out of my lungs.  But you’re on the hunt.  You’re on the trail of this crazy terrifying thing  that you can’t tear your eyes away from and the further you go, the more overwhelming the details become.  Then there is this moment, this turning point, when you have gone so far, suddenly the blackness is outdone by blinding light.  Suddenly you smack into the throw your head back and laugh reality, that there IS A GOD!  The complexity gets so complex and the detail so unbelievably detailed that you just stop and you know, look at this crazy molecule that has a grip on my child’s throat – but look at it, I mean really, really look at it – it’s magnificent!  It is elegant and beautiful and startling and just wild with splendor.  Yes, it seems like these chemical bonds and pathways hold power over my beloved’s life, but it is the absolute incredible glory of the molecule that is simply bursting and screaming the glory of God!  The molecule is not in control, it is a created thing by God!  God controls the molecule.  God is the one who formed all the elements and caused them to strive and seek and be on a rampage to get to that perfect state of rest promised by the Octet Rule.  Look at them go, how they agonize to obtain those last few desperately needed electrons or they push and shove to be rid of that last pesky electron.  Then there are the inert gases who just sit and do nothing because they need nothing – they are at rest, they are complete while all the rest of the world goes round and round searching to gain or be rid of to at last find rest.  And I know I have only begun to taste of their beauty and how I long for a lifetime or forty just to devote to understanding chemistry and what moves the whole universe and the guts of my child.  This is the part that makes me smile.  This is when I find myself laughing out loud.  Wow.  Look at you Lord!  Who are you?  I mean, really, who ARE YOU?

I keep bumping up against the same truths.  What I need is eyes to see.  I need to see!  Another night camping on the Oregon Coast, I of course had to go to the bathroom in the middle of the night.  So I walked down the dark path to the restroom and then rather than returning to my tent, I was lured down another trail.  I took the sandy path that led up the dune and out to the ocean.  You see, the campground was somewhat shielded by the ocean by a great berm of evergreens.  As I crested the top of that dune, I nearly fell over from a dizzying sensation.  I was met suddenly by three immensities that bore down on my tiny finiteness.  There was the black expanse of ocean as far to my left and as far to my right as could be and all the way out to the edge of the horizon.  The vast body of water was paired with the thundering sound of the waves – seeming power incarnate.  And above, oh above was the greatest expanse of all.  The night sky consumed all that there was and the absolute infinite number of stars that were so thick you could sense in your core that there was no end to them.  I look around me and see adjectives.  I see enormous, innumerable, powerful.  I look up and out and I look too, down and in and see the computer rendered 3D image of a protein.  My eyes follow the minute trail of the kinase.  Everywhere I look, I see WHO He really is!  I quiver and shake and laugh and dance and shout out, how great, Oh how beyond my comprehension is my GOD!

What is this all about?  I wonder at this question all the time.  Surely it must primarily be about seeing – seeing what is true – seeing the Lord for who He is.  But you know, it’s hard.  Sometimes, with my face pressed up against the terrifyingly complex MLL gene rearrangement where Allistaire’s 17th chromosome broke off and fused with her 11th, I want to scream and rage and rampage in fury.  Often I want to sit hunched down and weeping.  Because often, I can’t see what this is all about.  What I can see are pale beautiful blue eyes and plump pink cheeks that I can not bear to live without.  Cancer even fills my dreams at times.  Sometimes cancer is all that I can see and it is like blood pooling in my eyes.  When these times come what gets me back up is the reminder, the admonishment, to see.  For my face has been slammed up against the mosaic wall and the black tiles fill my view.  But stepping back, I can now see more tiles, more colors.  Every now and then I sense that I can see the edge of an outline.  Something in my gut tells me I am on to something.  There is something more, that if I could just stand back far enough, I might be able to make out a bit of a design.  This is chaos theory.  Zoomed in everything just roars with static and confusion.  But give it enough iterations, give it enough time, give it enough space and behold – patterns, images, designs, intention, beauty.  The hard-line evolutionist is willing to allow infinite time for a human, in all its glorious complexity, to come into being, but refuses for time to allow the full revealing of an infinite God.  Have you ever walked right up to an impressionist painting?  All you see is little incoherent dots of color.  Yes, it may be lovely and even worth your time to stand within inches of the canvas, but surely you would be a fool to deprive yourself of the joy of stepping back and taking in the full view – of seeing how all those “random” strokes really were applied with intention, intention to paint a starry night.

From that very first morning when cancer first swallowed Allistaire, I have been consumed by a relentless battle to see.  My days are filled with attending to the med sheet and filling syringes, washing syringes, driving to and from doctors appointments, putting food in and being alert to what comes out, to the color of cheeks and texture of skin and how long was her sleep and what is her energy level and don’t kick up the dirt because it has a fungus that could kill you….Four million dollars and 21 months and dozens of doctors and scores of nurses have all been in an all out race to preserve the life of my child.  The battle that presses on my face is the battle for her flesh and almost every act of my day is joined in that endeavor – my hand does not relax its grip on the sword.  But parallel and simultaneous, is this battle to see not only flesh, but spirit, the invisible.  When the road opens up into that fantastic straightaway and you dare to press the accelerator to the floor and you hear the high-pitched whine of the RPMs, you wonder how far can you push it, how long can you keep speeding wild on this trajectory.  You hear the instruments gather and swell and the violins are rising and rising in crescendo and you agonize with them as it seems they could not possibly strain to reaching any higher peak.  Imagine the accelerator is stuck, the violins don’t cease.  The ringing tension won’t let up.  This is how life has felt, two absolute furious, wild, grasping, unyielding battles fought side-by-side.  There is no moment that you can ease up on either; there is no taking a break, both demand constant attention.

And the truth is I am so desperately weary.  No matter how many hours I sleep, I feel exhausted.  This past month has been the hardest of all.  I had my eyes set on October.  I can make it to October.  But the flash flood of reality has swept that away and I am left gaping at the desolate land stretching out before me.  I have no landmark to aim toward.  There is no destination, no choice but to journey on.  It matters not how frantic I am to be done with this.  I have two faces set before me – that of Allistaire’s and that of my Lord’s, two faces that entreat me to continue on in the fray.  I have felt battered, left splintered and rough like wood exposed to the sea winds and storms so long.  I asked to speak with Dr. Delaney alone at the end of clinic on Tuesday.  I know I am not her patient but she needed to understand that I am too linked to that little girl to be disregarded.  I am about to break down in rage or sobs, I told her.  I am worn so thin.  I feel like a wounded, broken animal about to bite and snarl but who really needs gentleness and binding up.  I’m not asking to  be deluded with false hope, I just need a little compassion and to hear that she, as our doctor, is still in this fight.  Honestly, I got neither from our last doctor.  Anyone who is with Allistaire for five minutes knows that girl is not done and I needed to hear some determination, some tenacity that this battle is not over.  We walk forward, grim from the battle replete with defeat, but steely eyed and pressing onward.  Thankfully, Dr. Delaney is a spirited, cheery, smarty-pants doctor who conveyed great support to me and seems a trusty worthy ally.  What a gift, what refreshing in this parched land.

What lies ahead, I do not know.  This road has felt so daunting and long, but I am dismayed to see cancer still entrenched.  I am dismayed to see my own heart still so entrenched in its sinful, earthly ways.  Lord, surely you have ravaged me enough, surely you have ripped and dug out enough of my flesh.  But no.  You know what, as much as I have yielded, and as much as I yearn to yield fully, my independent sinful self is reluctant to be done away with.  I rage and scream because I still want to be the one who decides this outcome.  I still see with such finite eyes.  I still savor the sweet taste of the life I imagine for myself and so often I want to spit out this life the Lord has handed me.  This battle to see is unceasing.  Every thought I truly must take captive to the Lord.  I am terrified of what must still be to purge me of this earthly, temporal view.  And with weakness of voice, I say, Father, oh Father, remember that I am but flesh, I am but dust.  Forgive me and deal gently with me.  And there His words meet me, a bruised reed He will not break, a smoldering wick, He will not snuff out.

Allistaire and I are two broken girls.  On the surface, it may be hard to see the death dwelling within, but it is there and it constantly threatens to swallow up life.  We battle on.  Our weapons are chemo and the words of the Lord.  Our hope is for life abundant.  The quiet peace that enters is the truth that God presides over both wars and in the end He will win.  In the end, life will be the final reality.  As I rubbed Allistaire’s back the other night, I whispered to her, “Allistaire, do you know that in heaven there is a river that flows from the temple where Christ dwells, and beside this river are trees with leaves that heal sickness?  Do you know sweet girl, that one day there will be no more sickness and we won’t die again and there will be no more sadness?”  And that little girl was so abruptly alert and strained to form words to confirm what she had just heard.  “No more sickness in my blood?  No more sadness?  We can’t die anymore?”  No love, no more death.  No more sickness.  No more sadness.  We both lay then in silence and hot tears ran down my face as I yearn for that day.  Oh how I long to be done with this battle, how I long to lay down the sword, for the sickness of my sin and my beloved’s cancer, to be forever, ever and ever done away with.  But here we dwell in this already and not yet, this time between times.

As for Allistaire’s adorable body, she is also between times.  The first round of chemo is finishing up and next Friday, September 20th, she will have a bone marrow test to determine the impact of the chemo.  Her ANC did drop a fair amount but seems to have steadied, hitting 1,800 at the end of this past week.  Her platelets dropped some but have actually risen again and her hematocrit has been a rock solid 38.  We are thankful she has not needed any transfusions.  Her GVHD continues to be controlled and only shows up as a roving rash on her skin that has never gotten very bad.  Her liver function tests rose a bit over the norm but this was to be expected as her body processed the chemo and they have trended back in the right direction this last week.  My one concern is that she has complained quite a few times about pain in her legs, though this hasn’t seemed to really slow her down.  She has been full of joy and energy and enjoying lots of folks stopping by who she can convince to play hide and seek with her.  All in all, she is doing great.  This past week has been crazy busy with additional responsibilities.  Tuesday we had clinic and later in the afternoon had the joy of being present at a ceremony in which one of our beloved doctors, Dr. Ann Dahlberg, was awarded a $250,000 grant by the Hyundai Hope on Wheels Foundation which awarded a total of 10 million dollars to 41 different institutions this month of September, as it is Childhood Cancer Awareness Month.  Since the foundation’s inception, it has awarded over 65 million dollars toward the furthering of pediatric cancer research.  So amazing!  Allistaire also had her eyes and teeth checked out to determine any current indicators of damage from all the chemo and GVHD.  Thankfully, both looked great.  She had a chest x-ray and will also be getting a CT scan with contrast, both of which are to see how things look with her cancer and the nodes on her lungs.  All of this testing is done around Day 80 post transplant.  Typically, all this assessment would determine the overall state of things and result in the child either going home or potentially transitioning back to care through Seattle Children’s.  Clearly, this is not the reality with Allistaire, but they still do all the testing to provide benchmarks of how she is doing.  On Saturday, September 21st, she will start her second round of chemo.

As the battle rages on, I choose and delight to sing Psalm 103:

Praise the Lord, my soul;
all my inmost being, praise his holy name.
Praise the Lord, my soul,
and forget not all his benefits—
who forgives all your sins
and heals all your diseases,
who redeems your life from the pit
and crowns you with love and compassion,
who satisfies your desires with good things
so that your youth is renewed like the eagle’s.

The Lord works righteousness
and justice for all the oppressed.

He made known his ways to Moses,
his deeds to the people of Israel:
The Lord is compassionate and gracious,
slow to anger, abounding in love.
He will not always accuse,
nor will he harbor his anger forever;
10 he does not treat us as our sins deserve
or repay us according to our iniquities.
11 For as high as the heavens are above the earth,
so great is his love for those who fear him;
12 as far as the east is from the west,
so far has he removed our transgressions from us.

13 As a father has compassion on his children,
so the Lord has compassion on those who fear him;
14 for he knows how we are formed,
he remembers that we are dust.
15 The life of mortals is like grass,
they flourish like a flower of the field;
16 the wind blows over it and it is gone,
and its place remembers it no more.
17 But from everlasting to everlasting
the Lord’s love is with those who fear him,
and his righteousness with their children’s children—
18 with those who keep his covenant
and remember to obey his precepts.

19 The Lord has established his throne in heaven,
and his kingdom rules over all.

20 Praise the Lord, you his angels,
you mighty ones who do his bidding,
who obey his word.
21 Praise the Lord, all his heavenly hosts,
you his servants who do his will.
22 Praise the Lord, all his works
everywhere in his dominion.

Praise the Lord, my soul.IMG_4512 IMG_4514 IMG_4516 IMG_4517 IMG_4518 IMG_4523 IMG_4526 IMG_4527 IMG_4541 IMG_4566 IMG_4571 IMG_4574 IMG_4585 IMG_4587 IMG_4591 IMG_4615 IMG_4617IMG_4411 IMG_4412 IMG_4414 IMG_4420 IMG_4423 IMG_4425 IMG_4426 IMG_4431 IMG_4436 IMG_4438 IMG_4457 IMG_4464 IMG_4468 IMG_4478 IMG_4482 IMG_4484 IMG_4488 IMG_4496 IMG_4509 IMG_4511

Conglomeration, An Explanation


IMG_4361conglomerateIMG_4230For one year of my life I was a science teacher.  I didn’t really know what I was doing, but my love of science fueled the absurd number of hours I put into trying to learn the subjects enough to then teach them.  I taught Biology, Chemistry, Physical Science, Algebra and Earth Science.  One of my favorite memories was of my requirement for the 7th graders to pronounce the word “magma,” as though they were wide-mouth frogs.  The sound is impossible to convey in letters but ever funny to actually hear.  And so perhaps, it was these long ago memories of Earth Science and learning about all the different sorts of rocks, that subconsciously inspired the title, Conglomeration of Joy.  I first used “Conglomeration of Joy,” as the title to the annual family movies I made.  Like conglomerate rock, I imagined all the little bits of joy and life all stuck together to form a whole.  The memories were distinct and yet, they stuck, one to another, to make something bigger – a year – a life.  So when it came to that fourth hour of the morning on that first night in the hospital with Allistaire, I sat up and started this blog and it seemed natural to call this too, Conglomeration of Joy.  And it was a willing to possess, to take hold of, to call my own, the future that was unknown, but to claim it nonetheless, as a whole bunch of joy waiting to happen – joy added to joy to joy to joy – all the bits glomming onto one another to form the days and months and years ahead.

Today is September 1st and therefore, today marks exactly 21 months ago that this all began, when my little sweets was just twenty-one months old.  She has now spent half of her life fighting this cancer.  These twenty-one months have been full of joy – lots and lots of moments stuck together.  So today I’ve included lots of pictures to show you lots of those little moments of joy that are forming a whole.  I’ve also included an incredibly unlovely picture of myself on the day that Allistaire’s relapse was confirmed.  I’d rather hide this picture away.  It’s not becoming.  But it is real.  There are dark stones too; memories and situations and realities that you can’t preserve in a photograph.  As I’ve said now numerous times, they sit together, these joys and these piercing sorrows.  In the same day that I play tickle monster with Allistaire with us both needing to catch our breath from laughing so hard, I read these sentences: “Some cells acquire mutations that activate molecular pumps.  In normal cells, these pumps extrude natural poisons and waste products from a cell’s interior.  In cancer cells, these activated pumps push chemotherapy drugs out from the interior of the cell.  Spared by chemotherapy, the drug-resistant cells outgrow the other cancer cells.”  My mind suddenly remembers Dr. Pollard saying something months ago about maybe Allistaire’s cancer cells having developed pumps to reject the chemo.  My throat constricts as I think on those seven days of chemo she’s just completed and the hope we’ve put into that drug.  What if it doesn’t even get a shot at working.  I take my time these days, watching her face intently as she tries to put the words together to convey her idea.  I watch the muscles of her face express the effort of thought and delight.  I strive to soak her in and lap up all the beauty of being in her presence, of calling her my own little girl.  And the stress of the ever-present potential for face-smacking doom makes me edgy and unkind.  Then I berate myself for treating her as anything less that absolutely precious.  How can I ever dare to be callous with her?  But after an hour and a half of coaxing her to eat a half of a sandwich, I feel furious and crack and then have to pull her in close to me and apologize.  I think of the camping trip to beautiful Wade Lake we took as a family last year on Labor Day Weekend.  I fantasize about clothes that smell like campfire and the dampness of morning spent in the woods, of light filtering through evergreens, the smoke illuminated by rays of light.  I twist and struggle with the acid sweetness of envy of those who have fun plans this weekend.  There is an endless oscillation between drowning sorrow and a refusal to let the dark waters overtake me.  I feel like a prisoner who must be thankful for their cell because they are not outside the window, hanging from the gallows.

Why spend so much time and energy considering these sorrows?  I guess because I can’t get away from them, they wrap tight around my ankles as I try to outrun them.  And they are new, they are foreign, they are lands unexplored, seas uncharted.  I am perplexed by them.  They are the algorithm my mind works at ceaselessly whether by day or while I sleep.  I fiddle with their surfaces, turning them this way and that, trying to figure out what I’m looking at.  It is a taste I can’t get out of my mouth, a nagging at the back corner of my brain.  It is the dark presence in the corner that won’t leave.  I yearn for a life severed from this woe but there is also the advantage of contrast.  How utterly spectacular the light filtering through the leaves of the oak trees outside this apartment window.  How sumptuous Allistaire’s plump cheeks.  How miraculously simple to extrude joy from life.  How wondrous is one single cell.  How ample is good and beauty – how available is this harvest of grace exploding around me.

Conglomeration.  Piece by piece, bit by bit.  Minute by minute to form the hour.  Hour to hour to create a day.  The days pile up becoming a year and years meld to become a life.  I constantly slam into the question of how do I do this?  And the answer is always there and always the same.  We walk, just walk.  Sometimes, oh let’s be real, most of the time, I forget that all I am called to do is to walk with the Lord.  It’s not my job to cure Allistaire of cancer or to determine whether this disease will take her or something else.  It is not for me to know how all of this will impact Solveig or my relationship with her or my marriage.  Sometimes I feel the Lord just smiling at me and smoothing my brow, saying, “Just calm down, Jai.  I have this.  This is my creation.  Rest.  Rest in Me.  Be at rest.  Wait for me.  Look for what I will do. But even more, just know that I will hold you through this day and provide for all your needs, this day.”  And so I sit on the rock next to my Lord, looking out to the wild sea.  I don’t know which way He will lead me or what dangers and joys lie ahead.  But really, the point is, I’m with Him.  That is the point of it all.  He is our portion and we are His prize.

Allistaire did great with her chemo and finished up on Friday.  Many of the pictures are of her multiple days at SCCA getting her chemo, spacing out while watching, “Bubble Guppies.”  She was utterly confused by the commercials and was concerned with what happened to her movie.  She refused the information that this was TV and there were commercials but that her show would come back.  She insisted that she was watching a movie.  She never threw up other than that one time early in the week.  Her energy has not seemed to lessen, nor her adorable hilarity.  Chemo does not seem to have fazed her, except perhaps her appetite.  They nearly doubled her prednisone because of her skin GVHD rash but it responded extremely well and is only slightly visible now.  The doctors were pleased, which makes me pleased!  We had a fun adventure one day after chemo, discovering Ravenna Park and the beautiful trails that meander through the ravine with a little creek running down below.  Another day we had the exhilaration of a mighty rainstorm which provided the longed for opportunity for Allistaire to wear her rain boots in the puddles and try out her new umbrella.  There was also a very slow, intensely expressive dance by Allistaire all throughout the Starbucks at the hospital.  She retained complete non-expression of her face while her arms and legs conveyed incredible depth of emotion.  I could not stop laughing.  On a trip to Target, Allistaire picked out fancy panties (Wonder Woman, Bat Woman and Super Woman) to get her motivated to get back to using the toilet rather than mountains of diapers.  She is thoroughly excited about it but clearly has some muscle control to work on as she often wants to go every few minutes.  Our week ended with joy upon joy to hear that Stellablue’s scans were clear once again!  For those that may not remember, Stellablue was in treatment for Wilm’s, a cancer of the kidneys, beginning several months before Allistaire got sick.  She and her delightful family, Andy, Andrea and baby sister, Soren, are also from Bozeman and only live a few miles from us.  It was joy to see these two giddy girls together and for me, special delight to watch the brightness in Andy’s eyes as he told me about all the great connections he is making with researchers and law makers who are so motivated to accelerate and make available better treatment options for kids with cancer.  Andy is a man on fire and I love it!  And Andrea, sweet Andrea, pulled me back to her when I was ready to release the hug.  No, no, she insisted, we needed more embrace.  A bright stone – four bright singing stones stuck to our lives – what joy!
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