“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.”

I knew a girl once who endured years of being raped by a male family member.  Even as an adult she could not get away from him.  Even hundreds of miles away, he found ways to let her know he was still watching her and could take her and hurt her at any moment he wanted.  Few believed her about what was going on.  This man had a position of power and she had to simply find a way to endure.  She found Christ.  The torture did not end, but somehow in the midst of it she lived, face turned to God.

How she endured and how she faced each day with this horrid malevolent presence, constantly lurking, I don’t know.  Our situations are very different.  And yet, there is a way in which, no matter how lovely the day, or how wonderful Allistaire seems to be doing, there is an ugly predator constantly threatening to swallow up my beloved.  She has been so utterly full of joy and delight the last five days.  She wants to play balloon fight with me and be chased around the apartment, squealing in glee.  She drives her stroller with Doggie in it everywhere and has been walking ever-increasing distances.  We walked to the hospital the other day and all through the mall yesterday.  She’s getting stronger on the stairs.  She’s happier occupying herself for chunks of time coloring.  She is my joy!  When I tell her she needs to hurry up, we need to be quick, we’re running late, she says, “Okay, I’m going to be quick like a human.”  I have no idea where she got this, but yeah, quick like a human, I guess you can’t argue with that, but it totally makes me laugh.  Today she tried some of my Trader Joe’s Pesto pizza with broccoli and tomatoes.  I spared her the big soppy hot tomatoes but gave her a slice with some broccoli.  “Mmmmm, nummy, ” she says, “but broccoli’s not my favorite snack.”  She makes me laugh all the time and her chubby tummy just makes me want to squeeze her all the more.  But there, always there, in the corner of every moment, is the reality that this might be a short-lived joy.  The bottom could drop out at any moment.

Today her ANC and platelets dropped since Friday’s labs.  On Friday her ANC was 8,410 and today it is 2,950.  Her platelets were 209 and now they are 117.  When Nathalie, the Physician’s Assistant, was about to walk out the door to get Dr. Bleakley for the remainder of the appointment she said, “Oh, and her labs look great.”  I asked to see them and immediately noted the two drops.  They are totally normal numbers in the context of where Allistaire is at in transplant, but it is how they compare to her last labs that is concerning.  Both Nathalie and Dr. Bleakley said that these drops are perfectly explainable by the meds she is on.  The steroids caused her ANC to sky-rocket, and we are now tapering the steroids, so a drop in ANC is reasonable.  In addition, she has now been on Bactrim for the last week that can also cause your counts to drop, though platelets a little less often than your ANC.  Lastly, she also is clearly having a GVHD response in her skin.  Her face is quite red and blotchy.  There are also red blotchy spots on her arms, inner thighs, tummy, soles of her feet, a bit on the palms of her hands and on the back of her neck.  GVHD is known to cause platelets to drop – not always, but certainly it is common I am told.  So while there are thankfully many reasons that could be causing the drop in her counts, the obvious biggest concern is that she may have relapsed, that the cancer might be growing.  While it is wonderful to have had good bone marrow results before, they really tell us nothing about the present.  Given Allistaire’s extreme high risk status, Dr. Bleakley decided it is just better to go in and take a look at her bone marrow to see what is going on.  “If it were any other kid, we would just wait for the Day +80 bone marrow test as scheduled, ” they tell me.  So tomorrow at 2:05 pm, she will be having yet another bone marrow test.  This means, more significantly, more days of brutal waiting to know the outcome.  Because the test is later in the day tomorrow, we will not get the preliminary (Flow Cytometry) tests until sometime on Friday.  Then of course, we must wait a number of additional days to get back the morphology and cytogenetics test.  Previously, I was told that rarely do the cytogenetics differ with the flow cytometry test.  Yet, in the last week or so, this very thing has happened to one of our friends – the child had a 0% flow cytometry  test and then the cytogenetics showed that there was a small percentage of remaining cancerous cells.  All of this to say, we just will have to wait.  As before, we will make known the results how and when we are able.

You just cannot get comfortable in this life.  The moment you do, it seems something comes seering into your view that reminds you, no, your life is not normal, your life is ever on the brink.  I think it was literally just yesterday that I was thinking about the fact that I haven’s cried in a while (in a week).  There hasn’t been anything too scary.  I haven’t needed to call out to the Lord in desperation.  Things were starting to go pretty smooth and actually pretty lovely.  Yes, I had the flash through my mind this morning – I saw myself stepping off the deck into the front grass to move the sprinkler in the morning.  I stood up and surveyed the view.  Bright blue sky, day already hot, the Spanish Peaks, snowless in the distance.  Then like a vice, I clamp down the memory.  I shut it off.  I long for a hundred thousand things.  But ever, ever, I must incline my face to this day, to this place that the Lord has me.  My heart ebbs and flows, sometimes buoyant, sometimes leaden and low, so weary, so very utterly sad.

On Saturday, as I ride those 25 miles in Obliteride, I don’t know what I will know then.  I do know two things: oh how desperately I cry out for some better solution, some medicine, some something to make my child well!  Please, please find a way to make it better.  Do it fast!  Figure it out NOW!  We don’t have time to wait.  And I cry out, Oh Father God!  Come back, don’t delay, don’t hold back.  Come back and put an end to this broken misery.  Make these horrors end!  For all of us!  Not because He is cruel, does he tarry.  He calls me to endure because there are yet those who haven’t turned their faces to His – they have not tasted His beauty and grace.  And so He says, “Dear patient, you who suffers long, you must endure a bit longer.  There are those who have yet to taste of My abundant life.  I will hold you in the mean time.  I will carry you.  I will be your strength that enables you to endure.”  As I have so many times before, I sit, spent, at His feet.  “Yes, Lord.”  I choose to keep turning my ear and my face to Him.

So the thing I’ve missed most in the last 12 days since we’ve left the hospital is the Wi-fi.  The hospital Wi-fi cannot be beat and let’s just say things at the Ron Don are not even in the same decade (or three).  Everything done on the computer is super slow.  The upside of this is that Allistaire can barely watch anything on her iPad because it takes so long to load to begin and then stops repeatedly to catch up on the loading and since I’m working on cutting out such passive activities, this handicap is quite handy.  The down side is that things like writing a blog and loading pictures, take far longer as well.    In twenty speedy minutes I can have seven pictures loaded up to the blog.  Other great things about leaving the hospital are being able to do laundry in your own space, making it a far less epic event, not having to pack clothes for five to six days at a time, and more significantly, having privacy.  Oh the glories of being able to walk around in your pajamas and not having to close the door when you go to the bathroom.  While I am so thankful for the reprieve from people inundation, it proves to be a bit lonely too after the non-stop throngs of people who come and go in your space every day.  Allistaire and I are trying to figure out how we live this limbo life of being cast (thankfully) out of the hospital, but not quite landing at home.

Last week’s clinic appointments started with a pretty cranky attitude on my part.  Everything is new and the people are mostly all new and certainly the way things are done is all new.  I had grown quite comfortable in my little routine at the hospital and pretty much knew everything I needed to know to make it smoothly through the daily goings-ons.  It’s like leaving home and moving in with a new picky roommate who just wants you to do things their way and is not particularly yet enamored with you.  So we are learning the ropes over at SCCA.  At first I was quite annoyed that children being patients as well, seemed to be a point mostly missed.  It is a very adult oriented world over there.  Maybe the best part though has been the half hour or so we wait each time for Allistaire to have blood drawn for labs.  We sit in a room full of adults in varying stages of cancer treatment.  There is the construction worker fellow in multiple shades of camo who is in awe that he has had to do chemo for five weeks already for his esophageal cancer.  I’m thinking, “Buddy, five weeks is a breeze.”  But we were both in awe as he described the crazy surgery he has to look forward to in a month where they remove his esophagus and recreate a new one out of a variety of tissues.  There are the old men and women with canes and wheel chairs and long drooping ear lobes.  There is the mom from Arizona who is here to support her daughter who has already had two transplants and has her cancer back again.  We are all in it together, but I tell you, it is quite the sight to behold when a cute, now pudgy, bald-headed little girl comes walking in that room.  There is this magical effect that says, you know what, know matter how bad you have it, look here, this little one is walking the same road, mangy Doggie in hand, so cheer up and buck up.  What a strange and lovely camaraderie cancer creates.

The bumpy start was in large part due to my desperate desire to have Allistaire’s night-time hydration fluids decreased.  She left the hospital with an order for one liter (1000ml) to be given overnight over the course of 12 hours.  I have never changed so many diapers or washed so much laundry.  At 84 ml an hour, she was literally peeing through everything and this despite the fact that I was already purposefully changing her diaper at least 3 times every night.  Like a drug pusher, I thrust the water bottle of half juice, half water, into her face over and over throughout the day.  I have now nailed down the fluid goals that have to be met if she is going to get the required 43 ounces (about 1,275ml) in each day.  Breakfast requires an 8 oz cup of milk, followed two hours later by a four oz cup of juice and water mixed with her phosphorus and potassium supplements.  At lunch she needs another 4 oz cup of milk and before nap her 10 oz water bottle needs to be empty.  This essentially gets repeated after nap with the exchange of some yogurt that gets counted as half fluids.  It’s crazy but I am determined to get off this IV hydration.  We are thankfully down to 150 ml given over two hours and I’m hoping that by Tuesday’s clinic appointment, I can show them four straight days of meeting her fluid goals and have them agree to cut the IV hydration all together.

Exercise is my other big goal for Allistaire.  We buy groceries in tiny increments so that we have a reason to walk next door to Metropolitan Market nearly every day.  Lots of times she cries the whole way there and sometimes the way back too.  I look cruel, with my crying bald-headed girl trailing twenty feet behind me.  I wouldn’t normally shop regularly at such a pricey grocery store, but the journey to get another banana (to kick up her potassium intake) or an Odwalla C-Monster is well worth it.  We’ve also started walking the stairs.  We get her prescriptions at Children’s and so we always walk up and down at least two flights of stairs.  At clinic we get off one floor early and walk the stairs the rest of the way up.  Imagine the wailing of a three-year old in a stairwell.  Rough.  I recently noticed she favors stepping up with her left leg and that her right leg is much weaker.  Now I’m having her intentionally step up with the right to improve its strength.  Even though it is really hard for her, I think she is making progress.  She no longer walks on her tip-toes and hasn’t complained of the pain behind her knees for quite a while.  It seems time in bed had more of an impact than I realized.  The “drop ankle” effect of sitting or lying in bed, dramatically tightens up the achilles tendon, which in turns results in the tip-toe walking in an attempt to prevent the painful stretching of the tendon.  We park further from the elevator than I normally would; we find the little ways to add exercise to our daily life.

When you can’t touch dirt, grass, sticks, rocks or plants, there’s not a whole lot you can do as a three-year old.  When you can’t be around anyone sick or crowds or groups of children, there’s really not much you can do.  Finding things to occupy our time that are within the realm of what is safe for Allistaire right now is very challenging.  Being in the apartment all day gets old fast but alternatives are limited.  Fortunately, we are working on a bit of a routine that makes life more predictable which is so welcomed after endless weeks of the unexpected.  On Tuesdays and Fridays we go to clinic which involves labs followed by an appointment with the nurse practitioner or physician’s assistant and the attending doctor.  Once a week we also meet with the nutritionist.  These appointments fill up the first half of the day, so that when we get back to Ron Don it’s really just about getting lunch and then down for a nap.  We do baths and grocery store walks in the evening.  We have been enjoying regular Wednesday morning visits from my sister-in-law, Briana, my niece, Lucy and nephew, Elijah.  It’s great to see the cousins together!  We then head over to the hospital to do a dressing change, which provides more opportunities for walking.  As of last night, Friday night, I think we are going to start movie nights where we cuddle together on the couch with Redbox.  On either Saturday or Sunday, my folks come over for the day to give me a break and hang with the little lady who is working on not having an epic fit when I leave.  Her sweet face is hard to resist and turn away from.  On whichever weekend day the two of us are together, I think we’re going to lay low and feast on pancakes.  This leaves a day or two for other activities.  Thursday I took her to the Flight Museum where she really did love looking at all the planes and climbing in the cockpit of a few of them.  She also took about three flights of stairs – yeah!  We’re slowly figuring out how to make the most of our time in this new in-between world.

Allistaire’s meds continue to be monitored very regularly.  Her labs test for levels of tacrolymus, one of the immunosuppressants, and voriconazole, an anti-fungal.  The metabolizing of one impacts the other so I often gets calls from the nurse to adjust the doses of one or the other.  Labs also look at electrolytes which are “wasted” by the kidney’s as a result of the tacrolymus.  She gets supplements of calcium, potassium, phosphorus, vitamin D and a multivitamin in addition.  The only med that has been discontinued is her budesonide which was for her lower intestinal tract.  It seems, because she is not having any diarrhea, that the GVHD maybe on the mend there.  As of last Saturday, they have begun her prednisolone (the liquid form of prednisone)  taper, which is her primary and systemic immunosuppressant.  The prednisone, a steroid, is responsible for her now enormous 18 kg (nearly 40 pound) stature.  Her cheeks and tummy are enormous.  It makes you crazy hungry and redistributes fat.  Wow, she looks different.  You also hold onto more fluid.  The taper is extremely slow, going down 10 percent every five days.  I believe this is more for the purpose of slowly lifting the suppression of the immune system, rather than for issues of withdrawal.  At this rate, she would not be off completely until mid-September.  However, it is entirely possible, maybe even likely, that her GVHD will flare up and we’ll have to take some steps back.  I have no illusions about this.  The son of one of my friends is still trying to taper off of his predisone nearly two years post transplant.  Two other girls I know are 10 and 16 months post transplant and still working on their taper.  Apparently it is unnecessary to have no remaining symptoms of GVHD to begin the taper.  While a fair amount of Allistaire’s tummy pain seems to have disappeared, it’s still there every now and then and she has waves of redness in her face (seen in the first picture below).  GVHD however, may not be the only cause of these symptoms which could be the result of some of her meds.  The tummy pain could even be a bit of lactose intolerance developed after transplant as a result of the flora getting all whacked out.  I guess this is common.  Dr. Bleakley, says that the downsides of steroids, make it the best course of action to begin backing off.  If she has a flare up of GVHD (which often looks like vomiting, diarrhea, or refusal to eat) we can just go back up a bit on the steroids.  “This is not a failure of the plan,” she says, “this is the plan.”  That was a helpful perspective.  Her blood counts are doing great.  Typically her platelets are somewhere around 200.  Her hematocrit was an amazing 44 on Friday.  That’s right Gregg, even Lance Armstrong would be jealous!  Steroids made her neutrophil count jump to over 12,000 and her Bactrim, causes it to drop resulting in ANC of just over 8,000 yesterday.

Overall, we are doing well.  Allistaire is gaining strength and getting used to our new life.  When life has felt so out of control in such intense ways for so long, ordinariness and routines are so soothing.  It is like having your anxious forehead stroked with a calm voice.  Patterns, routines, cycles – so helpful.  Also such a gift for Allistaire to have regular time with her Washington Murphy side of the family.  She had a wonderful time today with her Nana and Papa and was full of glee when I returned home.  It is a joy to see her so happy – in fact this is the happiest I’ve seen her in the last several weeks.

One sad break in a pattern is that I was unable to greet sweet Solveig yesterday morning on her 7th birthday.  Traditionally, I wake her to a special breakfast and then we spend the entire day until late at night together.  Thankfully, she had a great day regardless, starting with a breakfast with Sten at the Western Cafe complete with Happy Birthday singing staff and patrons – this much to Solveig’s immense embarrassment and delight.  Then she had the joy of spending a chunk of the day with her cousins, Haaken and Per, and Aunt Jess, checking out all the wonders of the Museum of the Rockies.  The day wrapped up with time with daddy at the climbing gym and then parmesan fries and a hamburger at Ale Works with Sten and Haaken and Uncle Peder.  Sounds like tomorrow there will be an Anderson party up at our house as well.  Today she and Sten enjoyed the lovely Sweet Pea Festival, including the parade down Main Street this morning.  Yep, just like her mamma, she was in a parade.  (For those of you who didn’t know, I was once a Bozeman 911 Dispatcher years ago and enjoyed my own fame riding on the top of a fire truck down Main Street, probably in the same parade now that I think about it.)  I am looking forward to spending my day with Solveig when she comes next week…

Believe it or not, this time next week, God willing, I will have completed my 25-mile Obliteride to help fund cancer research at Fred Hutch.  Even though I’ve exceeded my fund-raising goal, I assure you, it is neither too late to donate, nor will the 10,000 plus dollars quite cover the cost of the needed research…SO…what are you waiting for?  Click the link below to connect to the Obliteride page and help little people like Allistaire, and big people like the old sweet guy with the droopy lobes, or perhaps do I dare mention, people like you and I who are maybe not so old, have a better shot at longer, healthier life!

It’s not too late to help OBLITERATE Cancer!!!