Sunlight filtered through leaves, ripples like waves reflecting sun.  The wall undulates with shadow and bright.  It calms me.  The leaves ruffle and quiver.  The trunk and branches moved by wind, light skipping.  I am exhausted.  Wildly furious, my insides quiver with the unceasing energy of trees in storm.  Guts and sinew under absolute force being torn from the inside out.  Unrelenting pressure and I push back and back and scream silent rage.  Every where I turn I fight, I fight.  I beat my fists and my face strains hot.  I oscillate between rampage and surreal calm, but both are fight, both are the jaw set tight, teeth clamped down.  The slightest touch can unload the spring of fury, so great is the tension set.  No provocation is necessary.  Just outright explosion of human force and raw, unfiltered, gut splattering emotion of terror, sorrow, anger, fear.  Deep bruises of seeping sadness, so tender and vulnerable I just bleed and bleed.  I wrap tight my thread bare facade of okay-ness to keep from falling over, to keep my feet moving forward.  And all the while I know I am ridiculous and all this fury and energy circling round like the darkest tornado, ravaging as it goes when He just keeps holding out His hand.  He keeps entreating.  He keeps inviting.  And round I go, shoving and kicking, keeping Him in the corner of my eye.

Every single day I battle Allistaire to eat.  I set the timer for five minutes and check her progress.  I am flabbergasted that she is still chewing the same utterly masticated, obliterated bite, seemingly incapable of swallowing.  Eat Allistaire, Eat!  And I check the clock and 50 minutes have passed and the plate looks the same and I set the timer again and threaten again.  Do you want a tube up your nose?  “We’re a team,” I yell; as though she knows what a team is.  You have to put the food in your mouth!   Meds are already 30 minutes late.  Another poopy diaper, a rank pool of diarrhea and the fifth since the morning began and I question myself over whether I should call the nurse.  They will probably want to scope her to see if it’s GVHD and that means more predisone and that means more immune suppression and that means less offense against that cancer, whom I despise, and that means my girl dies and that means I have to figure out how to live my life without my child and ravaged by God, and I rage and scream and beat my fist on the freezer door.  I collapse in the chair and I hate myself and I hate cancer and am furious at God and round and round I rage.  And He extends His hand to me and I keep Him in the corner of my eye.

The light is eight inches more to the right and the sun slowly lowers.  I rarely open the blinds anymore, preferring to stay cocooned in this enclosed space.  We haven’t taken a walk in weeks.  I haven’t been to church in months and the walls close me in, protecting and isolating.  We languish in this chemo cycle, round and round, with no end-point, just circling.  Since the time of my late childhood, when I had somehow come to know, as with a sense rather than thought or fact, that life sometimes hands over tragedy, I have prayed upon the first star of the night, that should disaster strike, that God would hold me close, that He would keep me from denying Him.  And night after night, I search the twilight with a frenzy no one else sees for that first star.  And I repeat my mantra and I ask to be held in by Him.  No matter what comes, Lord, help me to never turn away from You.

The tempo of the music rises, the fist constricts and the squeeze won’t let up and I run and run and pound my feet.  My tendency toward perfectionism, manic to every detail, every dose, every diaper, every color of skin, every hour of sleep, every gripping of tummy, every appointment, every procedure, every clinical trial, every, every, every.  With all the strength of my arms and fingers I press away at the cancer and throw my body weight around to knock it away.  I push and exert my 38 years and parental authority to get Allistaire to eat and I draw up the vigor of my mind to understand, to ask the right questions.  All my human strength and skill is called up to service in this all out war.  And it is not enough.  It is not enough.  I am exhausted and ashamed at my ineptitude.  And I stare flat eyed in the mirror, face laid bare and sick taste of rank sin in my mouth.  Shame for the yelling.  I am desperate for my love for her to make sinning against her impossible.  Surely I love her too much to take out my frustration on her.  Surely I love this girl too much for cancer to come slinking back and take her away.  My voice is raw from yelling at God to show up.  Okay You’re right, You’re right.  I can’t do this!  I am too frail, too weak, too finite.  My exertions are insufficient.  And there is His hand and He invites me to walk out onto the water, to trust Him, to be with Him.  But I look at the water.  It is dark water.  It is vast and deep and dangerous and I am wild with fear and wild with anger that He should call me to walk out on that!

All I ever wanted was to decorate my beautiful house and plan my nutritious meals and put together fun festivities for my family and learn to cross-country ski and fit into size 6 and be cute and have my husband love me and be kind to people and help where I can.  I sponsor my two girls from Ethiopia who have not heard a word from me in nearly two years.  But it’s not true.  I’ve always, always wanted more than that.  As a third grader I wrote that when I grew up I wanted to go to Africa and dance with a monkey and tell people about God and I was utterly sincere, about both of those.  And I wanted to be a doctor so that I might be like Christ and care for people’s tangible, physical needs as the first step in sharing His ultimate love.  And I chose to be a social worker because I wanted to take whatever privileges of mind and resources and upbringing I might have to be brought to bear on behalf of those so dear, so precious to the heart of God: the sick, the poor, the orphan, the widow.  And I still want to have clothes that are hip and a body I’m not embarrassed of and big, tasty dinner parties and a vacation now and then and to volunteer in my daughter’s class.  I’ve taken these gifts of mind and resource and I pulled out the map and plotted my course and then planned to implement my steps.  And my God, whom I love with every cell in my being, came and ripped that sheet of paper to shreds and confused the whole picture and showed me and shows me over and over my finiteness and turns my face to His vastness, to His incomprehensibleness, to His utter otherness and He blurs my view and I can’t see the way forward and He extends His arm and He doesn’t tire and I rage and rage that this cancer must end and I want my life back and Yes, God, YES YES YES I DO want what you have for me!  I do!  I want to go running into your arms and I never want to leave and I want to turn my eyes away from those tattered pieces and I just want to rest in You.  Oh how I am spent.  I just want to collapse and turn my back to all my plans and all my sin and all of my insufficiencies and I want to keep my eyes fixed on you.   I am hungry to worship You Father.  I am so thirsty to drink of You and be replenished.  I thirst to know You.

It is a day later and the flurry of emotion has dampened.  But is still there, smoldering, just under the surface and really can break through at any moment.  It doesn’t take much.  I am clearly outright, raging mad.  I want to say that I’m not mad at God because it seems crazy to be so furious with one you hold so dear.  But now that I say it, you know, the people I love the most on the planet have incited the greatest angst I have ever known.  Maybe I really am mad at God.  I guess I question whether that’s it because somehow being raging pissed off at God seems like the antithesis of faith in God.  But I’m not sure about that.  I mean, I think they are connected because I can imagine myself so utterly trusting in God that I just sort of float along with this whole thing.  That’s how I want it to be.  I want to be just serene, calm, exuding grace and patience and love.  Instead I disgust myself as I watch myself spit words of rage at Allistaire.  I flee the bathroom at SCCA when the 800th sweet old lady wants to ask about Allistaire and proclaims that she’s going to be fine.  I want to scream back, “Why?  Why is she going to be fine?  Because she’s a little kid and she’s cute and wearing pink cowgirl boots?  You think she’s somehow immune to that brutal disease that is stalking your life too?”  What am I doing?  What am I so worked up about?  Damn it, I think I just want to be in control.  That old lady makes it sound so easy, but man, I try, I try so freaking hard I’m surprised the tendons in my neck haven’t snapped.  And no matter how much effort I put into this, no matter how much I am saturated in my desire for her to be well, I really just have almost nothing to do with the outcome.  And it’s all linked together: her life, my life, they’re all intertwined.  There’s no compartmentalizing.  And I want it all, all of it, her, what her in life looks like.  And I’m furious and I’m terrified because I don’t want to give up what I want.  The details of what it tangibly means to fight cancer are perfectly clear to me.  The possibility of her loss and the ripple effect of sorrow and a big hole in our lives is quite imaginable.

And so I turn with fury in my eyes when I face God.  What?  What do You have to offer me?  Huh?  You take away this and you take away that and you gouge my heart and slash my flesh and you offer me…what?  And there was the silent perfect moment in Dostoyevsky’s, The Grand Inquisitor, when the Inquisitor has stalled in his rampage against Christ and he finally quiets but is seething in demands for Christ to answer him.  And what does Christ do?  He kisses him.  He answer’s that raging, arrogant man’s accusations and demands and questions, with a kiss.

“When the Inquisitor ceased speaking he waited some time for his Prisoner to answer him. His silence weighed down upon him. He saw that the Prisoner had listened intently all the time, looking gently in his face and evidently not wishing to reply. The old man longed for him to say something, however bitter and terrible. But He suddenly approached the old man in silence and softly kissed him on his bloodless aged lips. That was all his answer.”

And it seems this is the way it is with the Lord.  I stomp around in a huff and shake with fear and feel buried in sorrow and what does He do?  He extends His arm and offers embrace.  He does not paint for me a picture of what the days ahead will be.  He doesn’t tell me how long this will go on or what the outcome will be or if I’ll have to come to know what it is to take my child home to die.  He doesn’t answer me as I want.  Instead, He asks me to walk out onto the waters, into a future unknown, with no guarantee of anything and no means of security except Himself.  And I downright, absolutely hate it.  Because I am fleshly, because I am earthly, because I am finite and broken and small and nearly blind.  But there is too, that light in my gut, not of fury and wrath, but of desire, of fundamental, to-my-core, penetrating every fiber, longing to accept His offer.  There is the yearning so keen it casts down hot tears, and I want to say, Yes, Father, there is nothing I want more than You and I ache to be at rest knowing that You are all that this life is about.  Everything, everything matters, but only because it is all wrapped up in You.  And I choose to step out into the realm of mystery where there is no path for my earthly eyes to see.  I choose to stake my life on Your claim, that YOU, You, yourself are THE WAY!  There is no path.  There is no American Dream to be fulfilled.  There is no laid out ten point plan.  I am in YOU and that is all that matters.  Because of Christ on the cross I am invited in and kept in and delighted in.

I don’t know this man, Britt Merrick, but I hope to talk with him one day.  He has walked a similar journey, but is ahead of me.  My friend suggested I listen to his sermon from this past spring, entitled, “When Sparrows Fall.” (You can find it in iTunes)  I cried.  I heaved and sobbed as I listened.  I know that the whole of scripture is true and I know that this life is SO much more than what the surface reveals.  I know, as much as I know anything at all, that I love the Lord my God and I want to learn from Him what it is to live this life IN Him.  But I’m all tangled up you see, in this earthly battle for the flesh of my child, in this battle of my fleshly heart so bound to this earth.  But bit by bit, He is grasping onto me more.  I know from times past, when I was drowning in my sin and I despised His name, He does not let go of His children.  I have been bought, redeemed by the blood of this Christ whom I am growing to love more and more.  I have as a deposit, the Spirit of God, dwelling in this broken down temple of my flesh.  You fill me Lord, You give me the ability, the strength, the grace to take each step forward.  Lord be with me, be with me.

Under 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 4:13-15

When 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

I 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:

¹ Praise the Lord, my soul;
all my inmost being, praise his holy name.
² Praise the Lord, my soul,
and forget not all his benefits—
³ who forgives all your sins
and heals all your diseases,
⁴ who redeems your life from the pit
and crowns you with love and compassion,
⁵ who satisfies your desires with good things
so that your youth is renewed like the eagle’s.

For 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!

“The Italian memoirist Primo Levi, who survived a concentration camp and then navigated his way through blasted Germany to his native Turin, often remarked that among the most fatal qualities of the camp was its ability to erase the idea of a life outside and beyond itself…it was the erasure of the future that was most chilling…Cancer is not a concentration camp, but it shares the quality of annihilation: it negates the possibility of life outside and beyond itself; it subsumes all living.  The daily life of a patient becomes so intensely preoccupied with his or her illness that the world fades away.  Every last morsel of energy is spent tending the disease…For Carla, in the midst of the worst phase of her chemotherapy, the day-to-day rituals of survival utterly blotted out any thought of survivorship in the long run…The poet Jason Shinder wrote, ‘Cancer is a tremendous opportunity to have your face pressed right up against the glass of your mortality.’ But what patients see through the glass is not a world outside cancer, but a world taken over by it-cancer reflected endlessly around them like a hall of mirrors.”

“The arrival of a patient with acute leukemia still sends a shiver down the hospital’s spine – all the way from the cancer wards on its upper floors to the clinical laboratories buried deep in the basement.  Leukemia is a cancer of the white blood cells-cancer in one of its most explosive, violent incarnations.  As one nurse on the wards often liked to remind her patients, with this disease, ‘even a paper cut is an emergency.’  For an oncologist in training too, leukemia represents a special incarnation of cancer.  Its pace, its acuity, its breathtaking, inexorable arc of growth forces rapid, often drastic decisions; it is terrifying to experience, terrifying to observe and terrifying to treat.  The body invaded by leukemia is pushed to its brittle physiological limit-every system, heart, lung, blood, working at the knife-edge of its performance.”

I have never been to Vietnam, to Korea, to Iraq, or Afghanistan.  I have never been to war where guns and tanks and bombs and ships and metal and fire and brute force are the weapons of assault and defense.  I wear no uniform, nor metal for courage.  I have no badge bearing my name or stripes to show how long I have been involved in this fray.  Unlike Veterans of war who return home after long months and sometimes years abroad, fighting on foreign soil, our fight sits side by side with a fancy grocery store, in a land where I speak the language – in fact the very land in which I have grown up.  Other than one adorable bald head, which can easily be covered, and the occasional glimpse of tubes peeking out of a cute shirt, we blend with everyone around us.  But we are not the same -we are in fact largely isolated, caught in a trap from which we cannot seem to escape.  The paragraphs above are quotes from the fascinating book I am working through that I have mentioned before, “The Emperor of All Maladies,” by Siddhartha Mukherjee.  In conversation with the doctors one day, I brought up a question that the book had sparked.  They suggested I spend my time on a “beach read,” implying bizarreness that one in the battle against cancer would want to read something so heavy when they are already so burdened.  For me nothing could be further from true.  I read the book voraciously, in large part, because it describes a world and a reality that we live and breath every day but which most people cannot begin to fathom.  I imagine it might be like living on the other side of the world from your homeland and then coming upon someone from your own country, who speaks your own language.  You have been surrounded by people who view you as a foreigner for so long and there is sweet relief to be with someone who you can understand, and wondrously, they can understand you.  You know some of the same people and some of the same places.  The reality of cancer is always weighty but something mysterious occurs when you engage with someone who is living it or has – for you will always be marked by it.  Weight does not add to weight.  No, you bring your weighty burdens into the space there between you and the burden is actually diminished.  Oh, you may relay facts of your journey, but what it is like to walk this road – it need not be expressed and if it is, it is readily understood.  The thing is, this life, where every breath inhaled and exhaled has cancer in the very molecules of the air, gouges you so deeply and so uniquely that you grasp to put words to it.  You struggle and groan to give it a face and to pin down, to make concrete, it’s ever-moving, thick shadow.  You oscillate between desperately wanting others outside of it to really understand, or you shut down and shut out because the task of understanding is too great.  Good grief, you can hardly take it in yourself, how can you expect someone else to envision something that they have never seen and there are no words sufficient to scale its ragged heights or to plumb is terrifying depths.  So for me, I read about cancer because there is validation and comfort hearing the words in my own heart and days we have lived – spoken from outside myself, from some other person’s vantage point.  It helps you to feel a little less crazy.  When set in the midst of others walking this journey, you no longer feel so out-of-place, so foreign.  And because this “foreignness,” is not readily seen on the outside (especially that of the mom or dad of a child with cancer), you gravitate toward those whose inner lives more closely resemble your own.

So I watched a pretty intense movie for my self-imposed Friday movie night last weekend.  “A Lion In The House,” is a documentary by Steven Bognar and Julia Reichert who follow the lives of five children with cancer and their families.  After hooking up Allistaire to her IV pump and getting her settled in bed, I cozied myself upon the microsuede couch, so chosen for Ron Don because of its easy cleanablity post-throw up, with my bag of kettle corn and a fabulous bottle of Mexican Coke, the glass sweating from just having emerged from the fridge.  Though the clothes and hair styles were painful to watch, the lives of the children and the families were so familiar, I had to smile.  In the way that it is odd but natural to laugh when something is scary or wrong, I smiled as I watched the ups and downs of treatment of these five families.  You watch ordinary people with delightful children make gains and overcome and enjoy periods of “normal life,” only to have their stangulating cancer rise up again.  My eyes watched the little girl, Alex, giggle and run and play games with her dad – in the hospital and out.  You see that these are people exactly like you.  The faces of the moms and dads could be your own.  You catch your breath as you realize once again, that cancer does not discriminate and love cannot ultimately keep it at bay.  My heart tore as I watched the stories unfold and the turbulence of the parent’s emotions as they wrestled with how far and how long to keep pushing and when to let go.  You see caskets with the faces of children, their eyelids sewn shut.  You see the man turn from the room where his younger brother lies in bed but is gone.  He is gone and the nurse comes to wash his body and the orderly wheels him away.  Many would balk at the thought of watching this movie and perhaps even more so, that I should watch this movie.  But this is a land I know and a world entwined in my heart and life.  It is a landscape I may still have to face and somehow it helps me to look ahead to that awful yet possible end.  I despise all of the euphemisms used by doctors and people around me.  I wanted to scream at the doctor a few weeks ago when she told me the news of Allistaire’s relapse.  What I did say was that she better have the guts to the say the words that I have to live – she could at least go that far.  No, she can’t know what it feels like to live this life but she can at the very minimum force her mouth to make the shape that allows our breath to utter “die.”  I wanted to bellow and rise up with fists when she referred to the transplant as “unsuccessful,” as though it were some failed business merger, some pie that had fallen in the oven.

Within one hundred and twenty seconds of giving Allistaire her twelve doses of morning meds this morning, the hot thick yellow fluid came right back up.  We had twenty minutes before we needed to leave for her chemo appointment.  I was not fully dressed, her clothes needed to be changed, the floor and table and chair cleaned up, anti-nausea med given, more food eaten and the doses drawn up and given all over again.  I swore horrible violent words and raged and stomped my foot and acted like an utter fool.  Sweet Allistaire shook and said, “it’s not my fault.”  And I raged and swore and huffed and puffed.  Ten minutes later I was drawing up meds in the kitchen and crying and Allistaire asking with her little head tilted to the side, “What’s wrong mommy?  Why are you crying?”  And I feel filled to the brim with rage that is really just absolute heart-broken sadness, but I must press on.  We have to drive downtown to get her third dose of chemo.  Four more to go after that.  I ignore her and tell her to eat her granola bar and I go stand by myself in the bathroom.  Minutes later she comes to me to declare that she has eaten all her food and drunk all her milk.  She stands looking up at me with a tentative smile and eyes that plead for me to be proud of her.  And I ignore the clock and crumple down onto the hallway floor and gather her into the bowl of my lap.  I wrap my arms tight around her and press my cheek against the warmth of her prickly head with the new growth of hair.  I ask her to forgive me and I tell her that I am so sorry and I tell her that I should not have yelled and she is right, it’s not her fault.  I say that I must have been very scary when I should have been sweet.  And she smiles her very sweetest smile and says with her bright blue eyes and adorable voice that she forgives me.  I hate this life and it is so very precious and dear to me all at the same time.  You see, I do not have cancer.  There is not some violent disease threatening to extinguish my flesh.  But I hold her so tight she is virtually part of me.  She is the baby that came after miscarriage.  She is the life that has been so yearned for and for months and now almost on into years now, she and I have been side by side, overlapped.

These are probably not the words you want to read and likely you have no intention of watching this hard movie.  But today I speak for those who walk this path with us.  I speak for those who will one day in the future find their life plowed up like a ragged field.  There is unspoken pressure to “keep your head up,” to “stay positive.”  Yes, you must, you must, or you will drown.  We must keep going but, sometimes you have to look down and say out loud, “oh my, it seems that I am wounded and there is blood gushing from this deep cut, the blood thick and fast.”  It is tempting to put a pretty blue bow around this wound and say, “all better now.”  Pain and joy – they do not cancel one another out.  They sit side by side.  They co-exist and together form the picture.

Allistaire will get a total of seven days of Azacitidine and then will have three weeks where we “watch her like a hawk,” for any sign of her GVHD flaring that can happen with chemo post-transplant.  I asked what it might mean to have her GVHD flare.  “Her rash (which is over most of her body) could turn into third degree burns on her skin or she could get bloody diarrhea that we can’t stop.”  Oh.  Okay.  It is a twenty-eight day chemo cycle, at the end of which she will have another bone marrow test.  This chemo can actually take two to three cycles to really effect the cancer, so no reduction after the first round would not necessarily mean that the chemo is not working.  There is no choice but to live each day and wait and see – watching for how this tale will unfold in the flesh and in the spirit.  I wait for the Lord.  My soul waits.

This is a picture of the small pink spot on Allistaire’s back that was the only indicator of relapse back in February – the tiny bit of evidence that tipped us right into this black crevasse.  In our beautiful home in beautiful Montana we had quite a beautiful life, and in our midst, was a wee lion about to spring into action, and set to devour.

Like a woman used to being beaten, my mouth moves mechanically to accept the news, to ask the questions of what are the next steps, when does chemo start.  Whittling away, my surface gives way without putting up a fight.  It yields and is also strangely impenetrable, the news falling to the ground – barely leaving evidence that it ever came into contact with my flesh.

As today wore on with no word and my mind plodded and sprinted toward the inevitable conclusion, I saw myself upon the shore of a river.  I walked to the edge and watched as the current raced away from the place where I stood.  Deliberately, I stepped foot into those icy waters and I continued out into the middle, only seeking to maintain footing until the moment when I was in the center and felt the tug, pulling against my legs and torso.  Then I lay back and lifted my feet and knew I was being swept away.  I gave myself over to that force.  There was both terror and relief and odd calm.  I knew not where the river would take me, but I relinquished myself to its directing.  My eyes are hot and stinging with weighty pressure on my brow.  Maybe it is easier to give yourself over to the Lord when you look around at your life and see that you have lost your grip on everything you sought to craft into the vision you’ve held in your mind’s eye.  Perhaps the further you travel this road, the further you get from where you began, it begins to sink in that you are now simply too far away to ever return to that place.  You realize that this journey is not simply an excursion from which you will return.  No, you travel on, not knowing where you will settle but aware that it will not be in the home you left.  Those bars by which you measured your life are now almost absurdly pointless for they employ an entirely different system of units.  It is like having a bag stuffed with cash but arriving in a land where it’s value is not recognized and you realize it’s just paper.  It is of little use in this strange country.  There are heights and widths and depths you have never before known.  The light holds colors for which you have no name.

I had held out hope that maybe we would be nearly done with this road and maybe we would be back home soon.  Maybe, just maybe there would be nothing there and we could eventually settle back into our lovely little life at home – a life that has never looked so beautiful and precious.  But this .06% is all it takes to force you on.  There is part of me that is wide-eyed and desperate and whirling around, wondering how in the world I’m supposed to keep doing this.  There is the savage sinking awareness that we just can’t shake this pursuer.  It has bored deep into the core of our life – this faceless ravager whose poison infiltrates every part of our world.  Nothing escapes its dark shadow.

It is odd though to feel such seeming opposing sensations.  I feel beaten down, like a dog familiar with being kicked.  My face is flat and I seek to escape to a place where I don’t feel.  The losses have so amassed that I can no longer see their individual outlines. They pile up and my vision blurs.  I see my small beloved painting of the big round hay bales in late afternoon light at the base of the Bridger foothills.  I never got to see the fields turn green this year or all the happy bales of hay casting long shadows in the evening.  I’ve missed six months of Solveig’s life.  When she’s with me, she calls says, “grandma…I mean, mommy,” and it cuts and stings.  When I look ahead at the road before us, the woes amass and merge and blur into deafening sorrow. I cave in utterly – there is little left for the blunt force to act upon.  At the same time there is flat expanse, wide expanse that stretches itself into calm, into peace.  There is odd rest in giving myself over to the Lord.  I lay back upon the current and watch the sky pass overhead.  I don’t know where the course of this river will take me.  More and more, my life is not my own.  It has been stripped away from me and I can longer fret over it.  There is not even the slightest semblance of my being in control.  As a social work major, I learned the ethics core to social work.  One of these is “the right to self-determination.”  Such a lovely idea until you realize it is a luxury.  And there off to the side, in the periphery, is that still small voice of the Lord that proclaims that He is the one who determines the course of your life.  You’d like to just forget you ever heard that voice.  You’d like to keep your eyes straight ahead and drown out that sound with the notes of your choosing.  I no longer have the luxury of that illusion and yet, its loss is odd gift.  It is blessing that you sort of want to spit out of your mouth and one that you could never choose of your own accord.  No.  It had to be stripped from me.  With force.  With tearing.  With violence.  Because I was not going to loosen my grip.  I had every intention of marching forward, my own directives clutched fiercely in my hand.  But here I am – cast out into that sea of the Lord who knows no bounds.  I am indeed, adrift in the Lord.  He is above and below and surrounds me on all sides.  And I am giving way to Him, with burning tears in my eyes, and I hate it and I despise it and I want to spit that .06% right out of my life with raging disgust, but He directs the current.

I am adrift in the expanse of my gracious Father.  Lord have mercy.  Father thank you that you made days – days that have limits, that will at last end.  I lay down in exhaustion, but I will not forget Your first words to me when this all began.  “Be expectant.  Look for what I will do.”  Weariness presses me flat, but, but…I wait for the Lord, for the dawn, for His mercies new every morning.  I look expectantly for morning even as I close my eyes on this brutal day.

There is of course the shadow of doom ever tailing us it seems, but kids just don’t let you get too sad – they just want to spaz out all the time.  Allistaire’s energy and joy are sumptuous expressions of manna for every day.   Put Solveig in the mix and you get an amped up Allistaire.  It was so wonderful having Sten and Solveig here for the week with us.  It is the first time the four of us have been living together under the same roof since February.  Really it is amazing how deep and wide the joy available from the most simple of things – being together making pancakes, taking a walk, spending hours at REI, playing tickle fight, hanging out with my parents, brother, sister-in-law and all the cousins together…One of my favorite parts of our week was just yesterday.  We hit up a new restaurant to us, The Swinery, which I highly recommend if you love pork and don’t mind grease.  Then we went to Lincoln Park.  It was really a trip to hunt bears and to, “tie them up and take out their teeth,” according to Allistaire.  Earlier in the day we went to pick up Sten’s work bag that had been repaired.  Allistaire asked what happened to it.  Sten told her a bear tried to eat it.  Of course Solveig didn’t believe it and insisted on the real story which was that some of the stitching broke.  Allistaire refused to believe the story about broken string and insisted, “can you tell me bout the bear?  all bout the bear?”  So, we found ourselves needing to walk back to the car from the park and Allistaire started to melt down, saying she really wanted to go find the bears, “pretty please, pretty please can we go hunt the bears?”  Just joy and delight all over the place!

It has been a good week to acclimate to the possibility of more cancer.  Oh how I so hope for miraculous results on Wednesday that say there is simply nothing there, but it feels we are three-fourths of the way to relapse.  After the initial shock of the first bone marrow test results, it sunk into Sten and I that for us we are still going to walk forward as long as there are open doors and Allistaire is up for it.  I can’t look too far ahead, however, because it just feel like too much.  Some of the leaves on the trees have already begun to turn yellow and today was the first sunny day that the air felt a bit brisk.  Everywhere there is the energy of summer dying and the busying to prepare for the coming school year.  It is these changes of the seasons I find the hardest – these in your face reminders that time is just going forward and you are still here, battling this thing that won’t leave you alone.  When winter turned to spring here, there was the sense of hope that while we had to fight, we might win.  This impending fall is a bit harder.  Winter in Washington is not lovely.  It holds none of the invigorating glory of a Montana winter.  A Washington winter is pure dreariness.  It is flat grey skies and cold damp air and relentless rain.  There are major holidays ahead that are all about family and rejoicing and bounty, and it already feels hard to muster the enthusiasm.  Such days just seem to serve to remind in greater clarity how strange and wrong life feels.  But I must stop.  Today is today.  Today is August 19th and I am alive today.  Allistaire is alive today and we are going to swell and fill and swallow up all the wonder and joy and delight there is in this day!

Okay – so I haven’t brought you any videos lately so here: a few glimpses of the real Allistaire and Solveig followed by some science videos you don’t want to miss out on – really 🙂  The first of the two was recommended to me by our Physician’s Assistant, Darren, during a conversation with Dr. Bleakley about how steroids cause T-cells to blow themselves up – known as Apoptosis.  Please note that Darren wears Converse with his dress clothes to work everyday.  Makes me smile and probably has something to do with his video recommendation.  It appears there is an entire underworld of rockin’ and rappin’ science videos.

Allistaire Dancing a Little Hoopty

Allistaire Dancing a Little Slower Now

Solveig & Allistaire – Dancing Queens

Allistaire Rocks Out in the Car

It’s Too Late to Apoptize

Regulatin’ Genes

I’m not really drawn to the color grey, it being the combination of two of my least favorite colors, black and white.  Yet, grey has its virtues.  While it may not provide the clarity of white, it does not exert the clamping vice grip of black.  Grey makes room for possibility.  Grey is a cracked door – a door which may be closing, but is not yet.  On the other hand, grey may be an open door – you cannot be sure.  This in-between may make you uneasy because you just want to know.  Sometimes you want to be done with the guessing and onto the certain.  Being relentlessly hounded by cancer, ever snarling at your heels leaves you breathless.  At least you are still running.  You have not been drug down in that infamous roll of death as with the crocodile, submerged in opaque waters.

“Her cytogenetics are normal, ” Nathalie, the Physician’s Assistant, says on the phone yesterday.  WHAT?  What does that mean?  Her morphology came back normal.  This is not surprising since the quantity of abnormal cells detected by Flow was so small – only .01%.  A look under the microscope can only measure, with any degree of certainty, down to five percent.  But the cytogenetics are all normal – there are no abnormal, mutated cells.  There is no evidence of the wretched MLL (Multi-lineage Leukemia Gene rearrangement).  I laugh.  What in the world.  This roller coaster just doesn’t let up.  When Nathalie dropped the results down before Dr. Woolfrey, she asked, “what do you make of this?”  “That’s unusual, ” the doctor replies.  “I need something a little more concrete.  I’m about to call the family with results.”  Because Dr. Woolfrey was off to a meeting she said she would need to give it some thought and we would discuss it at our meeting this afternoon.  I laugh.  Well, normal is better than mutated.  You can’t argue with that.

Dr. Woolfrey started today’s meeting saying that things weren’t black and white.  At this point, we will take the grey.  Apparently this sort of things happens every now and then.  Very rarely, Flow will show cells with abnormal markers but cytogenetics will come back normal and cannot verify the results of Flow.  We have before us a murky picture, one still quite dismal but with the tiniest ray of hope.  At this point, Allistaire’s relapse cannot be confirmed and thus we will not be beginning chemo immediately.  It was interesting to learn that at other institutions, any amount less than .1%, is not considered a relapse because the number is too small to trust.  However, here at Fred Hutch we have the rock stars of Flow Cytometry and they are at times able to detect such small amounts that provide an earlier view of the reality at hand.  Dr. Pollard, who joined the meeting via conference call, said that what causes her such concern is that the abnormal cells marked by Flow express the same makers as Allistaire’s cancer cells always have in the past.  We were given the option to begin chemo immediately, but together decided to hold off for now and that we will retest Allistaire’s marrow next Wednesday, August 21st.  The procedure is scheduled for 10:40am.  This allows the sample to arrive early enough over at Fred Hutch for Flow to be run on it and to get results by the same afternoon.  This time around, any abnormal cells marked by Flow will be set aside and then individually undergo cytogenetic testing, rather than using a random sample of cells taken from the aspirate.  This should give us more conclusive test results.  However, even if the cytogenetics come back normal again, if the Flow shows abnormal cells, we will begin chemo.  This chemo, Azacitidine, has either never, or very rarely, been used in pediatric patients and thus there is very little data to show its efficacy.  It has had some promising results in adult patients, however.

One thing that I learned today that was exciting, is that AML, in particular, tends to be more sensitive to the effect of GVL (Graft Versus Leukemia).  What this means is that there is still the possibility that her own new cells may also be able to attack the cancer cells.  Today we completely dropped the Tacrolimus.  This means we are lifting the weight of immusuppression and allowing the donor T-cells to get in the game a bit more.  At this point, though, we are halting the taper of the Prednisone.  It is still extremely crucial that her GVHD (Graft Versus Host) be kept under control.  According to Dr. Woolfrey, who gave a super cool, smarty pants explanation that I could not follow, removing the impact of the Tacrolimus will have a more significant GVL effect than reducing her steroids.  I like it!  I’m all for Graft Versus Leukemia – Go donor cells, GO! GO!  Another way to potentially ramp up GVL would be to give her a Donor Lymphocyte Infusion (DLI).  Allistaire did not receive the full volume of the cells provided by the donor.  The remainder been sitting all happy and frozen somewhere on the Fred Hutch campus.  A DLI has been shown to be most effective after giving chemotherapy.  For this reason, Allistaire would more than likely only be given a DLI after receiving Azacitibine.  These cells have never been in Allistaire’s body.  They have not acclimated in any way and therefore, may be able to augment a GVL response.  There are also a few trials that Allistaire might be eligible for were she to have a greater disease burden, most likely over five percent.  The trials also have eligibility requirements regarding length of time since transplant and degree of GVHD.  Dr. Pollard, as always, is ever on the look out for all the options available to Allistaire.  We are so thankful for her ongoing support!

So here we go again.  I will take Allistaire to the “sleepy room,” once again and wait again in that tiny annoying room adjacent.  I will shove my fingers in my ears and shut my eyes tight again.  I don’t disregard the tangible realities before me.  Oh how I feel their weight.  I try to picture the marrow, the blood cells, the T-cells, all of it.  I get down low and peer into the intricacies of flesh.  My eyes scan for the proteins dangling off bulging cells surfaces; wondering at their nature, their true identity.  My breath is held as I see the retreat of the Tacrolimus and am alert to the surge of the newly unencumbered T-cells.  I thrill, both in terror and in hope at the battle being waged, silently, in virtual invisibility.  Yet I do not tarry here.  No, I lift my eyes up and call out.  I’m looking for you God.  I see you there, at work in the very molecules that make up my child.  I speak out loud your control over every atom present.  I know you are able Lord to do as you please.  Yes, incline your gracious, merciful heart to me and hear my plea for you to delight to preserve the life of my girl.  May it be that your glory would be most displayed in years upon years ahead for her.  But Father – this is your story – our lives are yours and this life is not about college and marriage and vacations with the kids.  Fullest life wraps up and envelopes these wee details into the great sweeping tale you are crafting in all its incomprehensible beauty!  I yield, oh how I yield, because I am giddy with hope for you to be faithful to all your promises!  With shut eyes and deaf ears to the muddled voices on the other side of that door of the procedure room, I stand in the temple of the Lord.  I laugh because I see that there is more than one sweet, bulgy cheeked girl, about to have her marrow plumbed again.  I look this way and that and see all the threads binding our little lives to that young woman there, and that single man over there.  And look:  this boy and that older man and that family and that town, and this life and that life and on and on it goes.  I bow my finite knee before the majesty of an in-finite God.  With head bowed, I smile that we should be included in so beautiful a story.

Psalm 33

Sing joyfully to the Lord, you righteous;
it is fitting for the upright to praise him.
² Praise the Lord with the harp;
make music to him on the ten-stringed lyre.
³ Sing to him a new song;
play skillfully, and shout for joy.

God needs some of His people to walk all the way down that darkest road.

In the few months before Allistaire’s cancer came back, this is what the Lord was pressing on my heart:  He needs some of His children to walk all the way, all the way down that black, deeply dark road.  This God makes outrageous, audacious claims about Himself – crazy claims like that He turns darkness into light.  My immediate response was, NO LORD!  Not me, don’t let it be me.  But to my dismay, I saw His point.  God declares all sorts of things that require testimony to their truth.  He claims the world is broken by sin – creation and our very hearts are rotting away because of sin, that rebellious sever that needs, oh so desperately, needs redemption, needs resurrection.

You know what, I never really wanted to need to bank on resurrection.  I don’t want to need to put my hope out there – in eternity.  I want what I want NOW!  HERE!  And oh I cannot begin to tell you how desperately I want my child – I want her!  I want her!  Let me keep her God!  But it seems that I may not be able to.

As I extended my arm to hand the checker my card to pay for my coffee, my eyes rose and took in the name on her badge.  “Allie.”  One of the things I liked about the name Allistaire is that when she got older, if she wanted her friends to call her, “Alli,” it would be a lovely name still.  It looks like she may not even reach her 4th birthday.  I may never again see her with hair.  Her chest may ever have these tubes hanging out of them.  I think I’ve decided that she should be buried with Doggie, though I will miss them both desperately.  But how could he not go with her?

When the Physician’s Assistant, Nathalie, and the attending doctor entered the room at the same time yesterday morning, I knew immediately that it was bad.  “It’s bad, I know it’s bad.  Just tell me.”  There is .01% cancer showing up in her bone marrow.  Point zero one percent, such a tiny, tiny amount and yet it seems likely, this cancer will be her demise, it will be the death of her.  The doctor said that her only chance for survival at this point is to have another bone marrow transplant.  They have already dumped the biggest poisons in her they can and it wasn’t enough.  It may be an infinitesimally small amount, but it only takes time for it to grow and there is now, virtually nothing to stop it.  She cannot have another transplant any less than six months from the last one.  Her body could not handle it.  The transplant itself would most likely kill her.  That’s just over four months from now, such a long time in the land of this beastly cancer.  There is the tiniest chance she could make it.  Maybe five percent.  They cut her immunosuppressant, Tacrolimus, in half and we will begin chemo next week.  The chemo, Azacitidine, is a relatively well tolerated chemo with lower toxicity and does not tend to overly suppress blood counts.  The idea is to ramp up her new immune system’s ability to fight the cancer cells, but this must be done carefully so that the Graft Versus Host doesn’t also overtake her.  There is a ninety-five percent chance she will die.  The doctor says that more than likely, she has six months or less.

This is the closest thing to torture I can imagine.  It feels like be gouged by a knife over and over, like being kicked in the face incessantly.  Honestly, the thought of this going on and on and on is beyond overwhelming.  I can barely get my eyes to rise to see December and beyond in the far distance.  I have no idea how I can keep going that long, and even then it may not be done.  But, done, oh done, how I don’t want what “done,” means.  How can I possibly stop walking forward if it means there is a chance to have our sweet girl with us?  I have lived 36 hours so far with this reality.  Step by step I will walk forward.  God has reminded me over and over, you eat the manna, you devour what He has given you today to nourish you and sustain you.  Eat the manna, the manna, the manna.   I watch Solveig and Allistaire spaz out all over the apartment and hear their laughter in whatever room I dwell.   Sometimes the manna is bittersweet on the tongue.

After Obliteride today, I lay facedown on the table, getting the complimentary massage.  Such a strange thing to have some stranger grapple your flesh and to experience such vulnerability.  So strange that there is a way in which someone else knows you better than you know your own self.  They are familiar with all your anatomy and you lay there accepting this kindness from a stranger.  As I lay there feeling my body being cared for in a way I could not possibly do for myself, I heard the band singing the refrain, “life goes on.”  Over and over this line repeated and I suddenly remembered the last scene in Steel Magnolias where there is a big Easter party and relationships are growing and babies are being born and children are growing up – all without someone who had been core to their lives.  The main character has died, but the lives of the rest go on, life goes on.  There is a way in which I want it to be impossible for my life to go on without Allistaire, because I want it to be impossible for me to lose her.  It is unbearable, so surely I should not have to bear it, right?  The pain will last for so very long and yet it is almost frightening that one can keep living.

I do not know how I will bear it.  I feel like I’m crumpling inside.  There was an evening several months ago when I was waiting in the turn lane to turn left into the hospital.  I waited for the oncoming traffic to clear and there was a moment when as I watched a car approaching that I thought it might just be easier to have it come barreling into Allistaire and I, that we could just be done with all this.  You should have seen the look of terror on the doctor’s face when I relayed this to her the other day.  But it’s true.  Sometimes I just ache to be done, to be swept away from all this.  A number of years ago, I remember expressing to my mom that I didn’t know why I had to keep living, why couldn’t I just be done and be in heaven?  Why can’t I just be taken up into the presence of the Lord like Enoch?  She reminded me that this life is not just about me and that there are those who do not yet know the Lord.  It’s not just about me?  It was so obvious I had utterly forgotten it, I was utterly blind to it.

Many times I have wondered why God would have things go the way they have.  Why would we have good bone marrow results at Day +28 if just three weeks later it would all come crashing down?  Why have a transplant at all if it was just going to fail?  I don’t have answers to these questions.  But I remember something my friend Madison said to me as she reflected on the months she spent in the hospital with her dear friend, Sarah, that died last year from cancer.  “I have never known unconditional love like that,” she said.  What is the value of such knowledge?  What does loving and receiving love unconditionally do to one’s heart and life?  Surely it has an impact on you like nothing else can?  My friend Gayle’s elderly mom wonders why she is still alive and not yet with the Lord if her whole body is failing.  How can we measure the treasures that are gained in these brutal days?  How can I measure what the Lord is up to?  How can I begin to imagine all the hearts and all the lives that are connected with our little finite lives?  Who are we to matter so much?  As I feel the length of the knife cut in again and I look up and see the eyes of my own Father – He could stop it and He doesn’t.  It is an audacious claim to say that my suffering my be used to bless others, to have the blood of my heart be the fodder for life, that out of this small death, life might spring up – but this is my hope.  This is why I yield.  This is why I hope.  In the few times I’ve been to church in the past five months, I have been shocked as I sing the words of the songs.  “Take my life and let it be, consecrated Lord to thee.”  So many things we sing to the Lord, but do we really know what we are saying?  Am I really willing to hand over my life to this God who would ravage me?  Am I really willing to accept whatever comes from His hand?  We have these pretty ideas of what it is to have our lives turned over to God.  We have these lives scripted out that we think would just be so lovely.  But like making a covenant in marriage, in sickness and in health, for richer or poorer, when we commit our lives to God, when we hand ourselves over, we are really saying, “God, you get to decide.  My life is no longer my own.  It is yours.  It is my living sacrifice and I lay it down, trusting you to act according to your perfect goodness.”  I have had a lot of good in my life, ridiculous amounts of blessing for which I am immensely thankful.  But these days are a good that I have a hard time seeing from my vantage point.  But I have tasted too much of the beauty and goodness and spectacular glory of God, to turn away.  I cannot get away from Him.  And really, I don’t want to, really, I want to see this thing through, I want to see what’s on the other side of the veil.  I want to behold with unveiled face, the fullness of His beauty.

So this road, this laceratingly dark road, I walk forward sustained from grace to grace, day after day of manna.  I intend to take note of it all.  I intend to bear witness to the days ahead.  My eyes and heart are alert.  And I pray that I may one day comfort others who walk this road with the same comfort with which I have been comforted.  I am not alone on this road.  It is a well-traveled road, far more trodden than any of us would like to think.  We want to stay insulated and unaware of its presence, but it is there, and many of us will have to travel it, one way or another.  I don’t know what other faces and hearts I will meet along the way, but how I long to be a means of God’s hands, His sustaining love to my fellow travelers.

2 Corinthians 1: 3-7

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.  If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.”