Good to Be Home

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IMG_0551IMG_0524It is strange to sit in my cushy arm-chair, to wake each morning while three others sleep and watch light overtake the earth, sun rising over curvature and bathing the evergreens in bright liquid green, the underbellies of clouds turning pink, the grasslands of the valley warming in yellows.  The aspens here are still leafless, but the snow now stands only in shady patches on the hills, amongst the trees.  Yesterday morning spring snow flurries filled the landscape with the swirl of bright white flakes against greening fields, the day warmed and the sky turned blue.

It feels so good, so utterly right to be home.  I feel a fool that we never even thought to include Allistaire in our decision-making about hospice, where she would end her days.  Then again, while I had considered on many occasions where I would want her to die, the truth is, the word “hospice,” absolutely knocked the wind out of me when it was first voiced last Thursday.  Hospice has always been linked with horror, the most inconceivable sorrow, the worst possible outcome. It is a word to turn from and flee from, willing your legs to run at speeds you didn’t think was possible.  All you want to do is to get away from it.  And as I have over the years been witness, sometimes from afar, sometimes closer in, to the end for many children, some going home, some dying in the hospital, I have asked myself, what would we do were it Allistaire?

Everything about the last four and half years has been held up against the question of, “what is best for Allistaire?”  All choices have been formed in accordance with the goal of providing her with the best possible care.  As I had considered those who went home and those who remained in the hospital until the end, I thought, oh, but I want so badly for those that care for my sweet girl’s body in her last days to know her as more than a body, to know the spunk and giggle of the girl whose body is betraying her.  I want to scream at the thought of her being viewed as only a heart rate, number of respirations, kidney function numbers, a pain plan.  No.  NO!  This is Allistaire Kieron Anderson, the child of my flesh, a girl hilarious and witty and beautiful and so very tender and kind of heart, a girl who will always entice you to play, who loves dress-up and colors rainbows endlessly.  It is this bright being, this girl who I so desperately longed to know as a woman, a girl who has fought so much harder than you can ever imagine, who has endured so much – she is to be handled with the greatest of care, with reverence, with delight and love.  And so I thought, I would keep her here, in this land where no only can she receive the absolute best of medical care with expertise in children, but with those who have cherished her, who have laughed with her, who have watched her grow up.  These are the people who in whom I will entrust her last days.

But somehow, it just never occurred to me that such a question might really matter to Allistaire herself and that there could be things even more precious than having those who care for her, know her.  So when we told her that she would die and asked if there was anything she really wanted, and her words came quick and clear, “I want to go home,” there was to be no denying her that wish.  And we scrambled to make that happen, and the honest truth is that I called out pediatrician in Bozeman to let her know we were coming home for a visit, primarily because if Allistaire died at home I needed Dr. Ostrowski’s help to know what to do.  Before I knew it, and without intending to, we had a “travel contract,” set up with Hospice of Bozeman.  And as we stood in the airport Saturday night with the sun going down over the Olympic Mountains, the land of my childhood, the thought of going home began to swell in my heart.  I knew that the setting of that day might be Allistaire’s last in the land of her birth, and yet home was calling in the deeps of me.

In the dark of night, the plane flew east, moonlight making the snow glow blue over endless mountains, the depth of the Cascades shocking in contrast with our perception of them from Seattle as simply a line across the eastern horizon.  On and on we flew, the mountains never seeming to let up.  The further east, the more my longing grew and in crept the thought, “I don’t want to go back.”  The urgency, the clarity of that desire turned more and more to resolve, the ambiguity of it transforming into solid matter.  I want to be home.  And why?  Why would we take her away from home again?  My rational brain spoke up telling me again how we didn’t know how well she could be cared for in Bozeman and Seattle was a land of plenty when it comes to medical care.  And while I conceded to that voice, still my heart claimed home.  And as I allowed my heart room to speak, again it became clear, how, how could we force her again to leave her home, a little girl who has hardly known home, who has been deprived of it, always being forced to buck-up and do the hard thing because the hard thing has been required to give her the best chance of survival.  But now?  Now?  Was Seattle really the only place that could provide her what she needed to keep her comfortable or could we perhaps find a way at home.

There are literally countless people who have been incredible gifts to us in this long, trying journey. And really, I think I’m tired of hearing people say “Cancer Sucks.”  With all my heart I wish Allistaire could have had the chance at a thriving life, but cancer, this wild, rogue cell of unfathomable complexity, in truth, I am in awe of it, it is a fearsome wonder that causes the humbling of the most mighty, the most intelligent, the most tenacious.  And cancer ushered us into a world we could have never chosen, a brutal road with hardships that have stripped us of so much, has gutted us and left us ragged and bleeding.  But along this very path I have at last been given eyes to see things I was previously blind to, and my wounded heart has been given entry into fellowship with those who also suffer and its longings have shifted.  This path we are told to fear, we are told to avoid at all costs and which really has stolen so much, has also had treasures scattered that can only be found here.  And it has been along this road that we have had the delight of having our lives being entwined with phenomenal people.

Dr. Angie Ostrowski has been one of many such folk and it is in large part because of her willingness to go above and beyond the requirements of her role as our pediatrician, that we can have the confidence and peace of having Allistaire remain at home.  Dr. Ostrowski came up to our home on Sunday afternoon and looked over Allistaire, a girl she has cared for the past four years, through two relapses and post bone marrow transplant.  She talked with Sten and I about our desires for Allistaire and how she along with hospice here in Bozeman and with Seattle ever available for consult, might be able to meet these needs and desires.  And while I suppose I already knew this to be true, I was reminded that even here at home, we have been blessed with excellent medical care, and more, a doctor who has known and loved my girl.

Sten and I both want what is best for Allistaire and ultimately long to care for her little self, the girl even more than the body in which she dwells.  For Sten there has been some concern about the potential difficulty of having Allistaire die in our home, and the impact of that memory for all of us going forward, however, in a commitment making a way for fulfilling as many of Allistaire’s desires as possible, we agreed to ask Allistaire whether she wanted to stay at home or go back to Seattle.  Originally our plan had been to draw labs on Monday and depending on how rapidly she seemed to be declining, we would decide whether or not to go back to Seattle.  But now, as we crouched before her sitting on the couch, and Sten asked if she wanted to stay or go back, again her words came without hesitation, as natural as breathing, “I want to stay home.”  And with that, it was decided that will not be going back to Seattle, and the absurdity of every asking her to leave home again was validated.  Why?  Why thrust this girl yet again from home?

And home, home, is not the very word calming, settling, restful?  Some think that we ought to cut our own days short when we see the likelihood of suffering coming for us.  I can only ask, what treasures, what sacred gifts might we be denying ourselves if we forego these last days?  Solveig and Allistaire sat snuggled up on the couch yesterday morning, holding hands and Solver’s arm around Allistaire, she nose sometimes nuzzling Allistaire’s bulgy cheek, Allistaire’s blue eyes looking out at valley and mountain and field.  Solveig reading story books to Allistaire while later she slept.  The two of them up in Solveig’s loft working on a craft.  Allistaire sitting with Uncle Peder, him teasing her, and her wry sense of humor jousting back.  Solveig, cousin Per and I clustered around the Candy Land board and later sitting out on the deck encircled around the little fire, roasting our marshmallows with Aunt Jo, perfecting s’mores and the challenge of just the right degree of toasting to pull of the crusty outer layer, the “scab,” and place it again over the glowing coals, the sound of wind chimes and deer in the field.  Solveig and Haaken and Per running down the driveway, flying the dragon kite with Allistaire tucked under blankets sitting enthroned in the cozy chair we set out in the grass.  Friends coming by with boxes of Kleenex and tasty food and love and a commitment to continue on as friends, never turning away when there are no words that can ease the pain.  Family flying and family driving from Washington all to gather round this amazing girl we have loved so passionately.  Home.  Where else could we possible want to be.  It feels so utterly right to be here, some satiation settling into the weary cracks of my bones.

Sometimes she sleeps when everyone is gathered round and talking and her body simply needs to rest all cozy on the couch.  And her tenacity remains as she insists on walking when it seems it could only hurt.  And somehow, the “Buddha Baby” look of being fluid over loaded, presumably from kidneys waning, has dissipated some so that her eyelids no longer seemed strained though her belly is still rotund and pulling her shirts tight, disappointing her that she could not comfortably fit into her mermaid costume.  And oddly her labs looked better overall yesterday, her creatinine down from .8 on Saturday to .52.  Her liver function numbers the same, her potassium and uric acid actually down and her GFR (rate of kidney filtration) improved.  Her platelet count and hematocrit still far enough above her transfusion thresholds that she should be fine for at least a few more days before another possible transfusion.  Her ANC is down a bit for sure and her LDH (and indication of cell turn over) rose substantially.  Thankfully her pain is under control.  While we have to handle her very gently given the pain movement causes her, at this time she is only on the extended release morphine tablets and hasn’t required anything additional.  She is sleeping peacefully at night and during her day-time naps.

It’s crazy how I still hold out hope, how I still think somehow this can turn around.  I guess the reality is she’s been in such desperate spots before, dark places with no seeming exit and against all odds, on quite a number of occasions she has made it out, overcome what seemed impossible.  The peaces comes quick when I am reminded that either God miraculously cures her or she dies.  Seems funny that this should bring peace but it does, because I have yielded this girl, handed her over to my Father and there is peace in no more wrestling, no more wondering.  Either way we are at home to stay.  We are never going back to Seattle to battle cancer.

We are thankful for the days given us, the hours, the nights that turn to morning.  It is perhaps the strangest of all to feel and know that we are eternal beings that making our dwelling for now in temporal homes, in vapors, as grasses and flowers that are here for but a moment and then wither and die and yet yearn for what we were meant for, a life that goes on.

Thank you to so many who have poured out your love and compassion on our family, for your passionate prayers, for your words when you feel your words fall flat and are insufficient, for your sweet faces and texts and cards.  Thank you to so many of you who have donated money to accelerate cancer research at Fred Hutchinson Cancer Research Center.  While I have respect for our devious foe, cancer, don’t get me wrong, I still intend to pursue that beast until it is slain and I greatly appreciate your support in this endeavor!  So below is a link to donate to Obliteride, and also a link for Bozeman folk who’ve expressed a desire to help us out with meals.

I should also note, we are not planning to have any sort of memorial service right away.  I do not want my time divided right now, I want to cherish these days.  There will be time later to plan how we want to mourn together and rejoice in her sweet life together.  However, knowing that such a time will come, it would be such a gift to us if you would send us a wee note of what you have loved about Allistaire, how her life and story may have had an impact in yours.  I will never forget the clarity of God’s words to me that gray December morning in 2011 and the peace that they wove in my heart – “Do not focus on all that you fear you will lose, but be expectant, be on the look out for what I will do, for the bounty I will bring out of this.”  While my hope for that bounty lies largely in heaven, it would bring such humbled joy to get a glimpse of God’s goodness here and now, in this world in this life.  So if you’d be willing to take the time, mail your notes to our address below:

14176 Kelly Canyon Rd, Bozeman, MT, 59715

Click HERE to help put an end to cancer and support me in OBLITERIDE!

Click HERE to sign up to bring a mealIMG_0463IMG_0465IMG_0467
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Come to the End

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IMG_0461IMG_0447IMG_0457The cursor blinks.  Waiting. Waiting for the words to come, to extract from the blur, to distill the thunder and wailing silence.

We are those people.  We have become strangers from even those who have known this road with us most intimately.  She is not yet gone but the memories, they flash in and burn.   Every step igniting shards of pain.  Beauty and joy, that with the awareness of their loss, pierces rather than delights.  Thoughts, uninvited barrage, come sailing past, slicing, blunt force.  I was teaching her the names of plants and she would yell out their names as we drove about – forsythia, I see forsythia, she exclaims. Red-tip Photinia gets blurted out over and over.  And there it is, a brutal mingling of what once brought joy and proclaimed life and growth is transferred into the category of no more and then the gaping expanse of emptiness where more names of plants were supposed to dwell.  But I wanted to teach her to crouch low and delight in the delicacies of moss, of tender fern, of trickling stream, to watch the light stream through trees, to stop and listen, to soak in life, to learn the secret of the bounty observation brings…

We have had rough times before, really really rough times.  There have distinct situations in which her life could have easily veered toward death, it was right there, standing at the threshold but never had it entered in.  To look at her is disorienting, to consider the severity of the situation keeps getting rejected and spit out over and over.  Dr. Cooper called in early evening.  I told him of the second guessing our decision that had already come, of the disbelief that she really is being over taken by her cancer, that there really is nothing to stop it this time.  I ask him again, are you sure, totally sure there is nothing for her, nothing?  Nothing.  There is nothing left.

This morning I thought, maybe there is something out there in the world, some new and wild way to tackle her beast, some new angle that can catch it unawares and strangle it at long last, extinguishing its mindless assault.  But no.  There are only the same grooved paths.  Therapy, primarily chemo, all to get to a transplant and she just had a transplant.  She just had THE transplant, the no holds-bar transplant, a full-conditioning volley of weaponry – if that didn’t work, there is at present nothing more under the sun that can cure.  And so the question rises, can we give her something to hold her, to simply keep her going?  But to what end?  And it’s not like this doesn’t come at its own cost.  The one possible goal was a CD123 CAR T-cell trial that is still in the works at CHOP (Children’s Hospital of Philadelphia), but it is months and months out.  And with Allistaire’s current heart function she wouldn’t qualify anyway.  And perhaps more than anything, the startling speed of this cancer’s progression makes nearly any novel therapy too late.  Her kidneys are suffering with a steadily rising creatinine level.  Her potassium and uric acid or rising due to tumor lysis.  And this rise in potassium, the unbalancing of electrolytes, could at any moment cause cardiac arrest.

Before we knew it, without intending to and without being able to yet utter the words out loud, we began to discuss what it will look like for her to die.  Does kidney failure hurt?  No, it would be peaceful.  As would her heart simply stopping, peaceful.  What a strange thing to hope for your child.  I do not want chloromas to overtake her body – they cause incredible pain and deformity.  No, it seems most compassionate to make way for some other finality.  I do not want her to bleed out.  We must keep giving her platelets.  But red blood?  It may come to the point that we simply don’t give her any more red blood and she will grow more and more tired and sleep and never wake up.

I cannot believe I am having to have this discussion.  I cannot believe the words entering my ears or coming from my tongue.  It sounds like logistics, some planning committee.  Hospice will meet you on Monday at noon.  PAC Team (Pediatric Advanced Care Team) will do this, Dr. Cooper will check on this…but there is this little girl, the nucleus of all these efforts, these considerations.  And while it all might sound callous and aloof, distant, I am confident of the sincere care for Allistaire in that room, especially that of Dr. Cooper and Dr. Bleakley, two doctors who have intimately walked this road with us, who have thought long and hard over Allistaire.  They are dear to me and I trust them.  I trust them because the are incredible brilliant people who have walked this road with families for many years, who understand the disease far, far more than most and who have known Allistaire as a real girl, not a med rec number, not a PET scan result or Flow Cytometry percentage.  And so with what very little time we have left with our girl, I will not go running after obscure options.  We have chosen to rest in the expertise of our doctors who are connected nationally and internationally with fellow physicians also working on AML.  They are a gift of great worth to us.  They honor us and honor Allistaire in their enduring work to care for children with cancer.

I am already incredibly tired.  I don’t want to leave her side.  I feel the tiny bones in her hands and the light passing across the tiny little peach-fuzz hairs on her cheeks, the long dark lashes and puffy eyelids.  I listen to her breathing and rub the warmth of her back, the delicate blades of bone.  And it all just hurts so bad.  Tonight is Friday night.  It’s always been Friday night pizza night and a movie. Sten and Solveig honor that tradition in Montana and we here in Seattle.  But tonight?  What is tonight?  Is it my last Friday night with Allistaire?  I gag at the thought. I long to throw up, to some how clamp my hands over my ears, to press my eyes closed tight and somehow make it all go away.  Can I just go back to a week ago?  Can I just undo this awful week?  Can we please not take this path?  I want to scream and scream and scream until my voice is gone.

When we sat with Allistaire on her bed and told her that we had met with the doctors and there was no medicine left, that she would die, we asked if there was anything she wanted to do.  “I want to go home,” she said.  And while we feel our resources for this situation are best here, we are taking her home for two days.  Two last days at home in Montana.  Time for the four of us to dwell in that home one last time altogether.  Time for our family to gather.  I don’t know how our hearts will bear up under it.  But we must live out each moment, each minute that amasses to become an hour, and hours days.  Yet we may really be down to days and I can’t stand the thought of it.  My body just shakes, rejecting that the child I gave life to I have to at last lay down and walk away from.

I must go to sleep.  In the morning I will pack for this brief visit home and she will get a transfusion of platelets and red blood to tide her over.

Thank you for your many messages of sorrow and love.  Thank you for your prayers.  Many of you have expressed a desire to help.  First please understand that our time with Allistaire is so short, we will really be keeping to ourselves and our immediate family, a few close friends.  At this point in time we ask that you don’t ask to come visit unless we have already communicated with you.  Please know this is no reflection on you, rather a need to be realistic with our finite time and emotional resource.

Another way to demonstrate your angst toward cancer, your sorrow over the loss of Allistaire’s fiesty bright sweet spirit in this world, your support of our family, is to give to OBLITERIDE.  I cannot tell you how brutal it was this morning to hear of amazing research underway in the lab that is no where near being ready for Allistaire.  While I rejoice at the advance of cancer research, it is too wickedly slow!  What heartbreak to know that while cures are underway, Allistaire’s body will have already ceased.  Please consider honoring Allistaire’s life by supporting me in funding cancer research at Fred Hutchinson Cancer Research Center through Obliteride.

Click HERE to donate.

“Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.

Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen.” (1 Peter 5:8-11)

Blind Sided

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IMG_0434IMG_0435Blind sided.  Out of no where.  Everywhere bright sunlight, perfect blue skies, flashing radiant green leaves, bursting life.  Though my mind knew the possibility of what the scans would reveal, optimism actually seemed to fill my view and I am not prone to optimism.  I realized I had seen no change in her eye, nothing to show the march of cancer in her sinuses.  Wednesday morning I knew I would end that day knowing something profound.  And there seemed to be light on the horizon, it seemed within reach, for once a real genuine possibility that we might outrun this beast, at least for a time.  There was one dark blot.  The nurse practitioner on Tuesday had a very challenging time getting her marrow.  She poked Allistaire three times in the right hip, twice in the left and so little, so little came out.  “She bent my needle,” she told me.  As soon as I saw her I anticipated something being wrong; my hot flush validated.  Such a thing had only happened when she’d had disease.  But she couldn’t have disease in her marrow.  In an entire year of low-key chemo, she’d only had low level disease one time.  I never even thought to worry over her marrow.

Dark shadow suddenly overtook sun.  I had not heard the pounding of its horrible feet.  No awareness of its stench.  The speed with which it grabbed Allistaire…in a flash she went from her normal joyful little self, a bright sprite, a light, giddy blue eyes, a vibrancy…her face has already changed, her eyes puffy and the blue small slits full of pain.  She has done little more in the past 48 hours than sleep and call out, whimpering from pain in her arms, her legs, her head.  It hurts her to move, to shift from laying on one side to the other.  If she walks at all it is tentative and slow, pain, pain.  Gasping, gasping, mouth wide in horror, in shock, confusion.  What?  What is going on here?  My understanding fails me.  I could not comprehend the words…”there are two soft tissue masses in the left supraclavicular location…there are new hypermetabolic lymph nodes and lymph node clusters in the porta hepatis, retroperitoneum, and mesentery…there is diffuse increased FDG activity in the axial and proximal appendicular skeleton…the sinuses are clear.”  A snarling tearing, flesh from flesh.  No disease in the sinuses but, disease everywhere…in the short span of a month those cancer cells have been advancing, overtaking.  Oh my God, oh my God.

In the span of a moment, we are careening into black, the suffocating grip.  We had skirted this storm for so long, the black clouds, the sucking winds, an inertia ever threatening to draw us in and while it has always been with us, all these four years and five months, while it has remained in view, somehow, somehow we had evaded.  I called Sten…you and Solveig need to come.  Solveig arrived at 7am and Sten tonight.  We went to SCCA for Allistaire’s regularly scheduled Thursday morning labs.  When we left six hours later, as I cradled Allistaire’s great 20.7 kg of flesh, and was turning to go, I looked at Dawn, our long time nurse, the words caught in horror, “I don’t know if we’ll come back here…”  Oh God.  Oh God.

How could light and hope be extinguished in so short a time?  I began the day knowing there was probably nothing we could do for Allistaire; that there was probably no treatment that could cure her.  But still my heart clung to the hope that there might be something to hold her, to get her further down the road that somehow her life might intersect some new wonder of research, some new therapy that could somehow, somehow stop this ravaging.  I thought my challenge would be taking the girls to Disney Land and not crying the entire time.  But there was Jamie, the fellow.  “Her marrow has 9.5% disease.”  No wonder she’s in pain.  Her bones are filling with cancer.  In the course of time I learned that her chimerism had changed, now only 85% Sten and about 15% Allistaire, about 15% cancer.  How could this be? A week ago I was told her chimerism were 100% donor.  I could have never imagined this speed.  Her labs show rising uric acid and potassium, evidence of tumor lysis, of rapid cell turn over, of the multiplication of millions of the most fearsome of cancer cells; cancer cells that had some how thwarted the assaults of a nuclear blast worth of radiation, of over 25 rounds of chemo, genetically modified T-cells and the mis-matched cells of another.

All of sudden I realized…the good has already passed.  I have most likely already taken her to the park for the last time.  When was that?  When was the last time I followed behind her on her bike on the Burke Gilman?  When was the last time I tickled her until she cried out for me to stop, never wanting me to stop.  When did I last see her face look like her face, hear her unfettered laugh.  I feel myself going down, my own flesh ripped from bone and tendon, sinews tearing.  Agony.  How can this be?  How?  How could I have already lost so much?  But I didn’t even know!!!! I didn’t even know it was happening.  I thought there would be time, time.  And just like that – everything has changed.  Every action has always been in orientation to her survival, to her life going on, to sustaining.  And now it’s all been swept away.  It’s already gone.

I looked at the toilet seat covers.  I noted the handle to the door that I would never have touched with my bare hand.  I thought about her reading book laying on the table at Ron Don.  She’d come so far.  She was doing so well learning to read.  And now it was gone.  When was the last time she sounded out a word, read her short little stories?  She never even got to go back to school after she was discharged from the hospital because of her cold.  I won’t have to figure out how to home school her.  It won’t matter if other children in our town are not vaccinated.  They can no longer but her in harms way.  I won’t have to mourn that she can’t go in the water at Cliff Lake.  She won’t be there.  She won’t be there for my birthday.  She won’t be there for Obliteride.  She said to me this afternoon, she said, “I wish Obliteride was happening right now.  Why sweet girl?  Because there’s no medicine left for me.  And then the doctors would have money to find something for me.”  Aaaaaahhhhhhhhhh!  The flesh of my face contorts and my heart beats hard.  How will I get on my bike?  How will I ride those miles?  How can I not get on my bike?  How can I not ride and ride and ride and ride and never stop, never stop asking for more.  More.  We need more!

Dawn showed me the med list, wanting to know if there were any meds I wanted to stop giving her.  Because suddenly we don’t have the long view any more.  Suddenly everything I have done as a parent to push her, to care for her as a person who will grow into an adult, it all falls flat, out of place.  It no longer makes sense.  I hesitated.  How could I say no to any of those meds?  How can I yield?  How can I yield?  How can I hand her over?  But what does it look like to love her now?  I have for so, so long fought for her, defended her with all my might, been attentive to ever last detail.  How do I just walk away.  How do I just stand with arms at my sides at let it come for her?  We still haven’t met with the doctors to come up with a plan, but as the day progressed it became more and more clear that there is probably nothing to be done but make her comfortable.  I asked Dr. Wolfrey, what do you think?  I know you can’t tell me how long, I know you can’t predict, but you’ve been here a long time, you’ve seen a lot, what do you think?  She agreed that it had taken everyone by surprise, the change had come out of nowhere, there was no hint of its onslaught.  But given the rapid progression, she said probably no more than a month.  Maybe two weeks.  Maybe one.

Incomprehensible.  I literally don’t know how to comprehend.  I feel the immensity of this is more than my flesh knows how to allow in, to take into myself.  Though I have intentionally looked death in the eye over and over, have never turned away from its black looming form, despite holding the cold hands of my friends children, it remains a reality disparate, utterly apart from all I have known of this child who has only ever burst with life.

What I can tell you is that those close to me, dear to me, those whose beloveds have died, they long to be reunited with them.  And those that know Christ – their yearning has a specificity, a particular quality and dimension, a faint outline, their eyes keenly fixed on the shadow of what is promised, they have a yearning unlike anything they had previously known that draws them to the Lord, to call out with groaning for Christ to return, a desperation to leave this life and enter the next.  Mental assent to the concept of death and disease and sin is not enough.  One most know the gnawing of disease, the gaping hole of death, the ugly betrayal of sin in order to loosen the grip on this life, this world.

Ingrid Lyne’s sawed off head and foot were found Saturday afternoon in a recycling bin.  She was savagely murdered by the man she was dating.  She was a nurse at Swedish Hospital.  She was forty years old and the mother of three young girls.

On the same day that Ingrid was found, my friend’s brother-in-law jumped off an overpass in California.  He leaves behind his wife and sons.

A woman in our town suffering from postpartum psychosis, shot her husband in the back of the head, then her sixth month old baby before calling 911 and then shooting herself.

My friends have a box of all that remains of their little girls, ashes.

My sister-in-law grieves Jens’ body broken at the bottom of cliffs.

I have yelled ugly, belittling words at my children, the very children of my womb, the children I love.  I have harmed my husband and not made safe space for him, I have been guilty of immense selfishness and materialism and arrogance and gluttony and coveting.

My six year old little girl likely swept away, never to admire her hilarity again, to see the sweet compassion in her eyes, to rub her back at bed time, blow kisses…

And you ask me how I can groan for another life, for another world, for an altogether different sort of life?  How can I not?  How can I not scream with every raging cell of my body that children should not die, that depression should not destroy, that sin should not ravage?

The brutal unending brokenness of this life, this creation causes my eyes to rise, to lift up, to fix my gaze, my hopes on God.  Apart from hope of another world, another life, despair might likely dominate, or numbness or distraction.  God declares this of the life to come, “Now the dwelling of God is with men, and He will live with them.  They will be His people, and God Himself will be with them and be their God. He will wipe every tear from their eyes.  There will be no more death or mourning or crying or pain for the old older of things has passed away.”  (Revelation 21:3)  This hope enables my to look full into the face of this agony, this dark, impending death, horrific violence, utter despair, and see the promise of more, of different, of other and my longing grows.

The bulk of my hope lies in a world yet unseen, in a reality promised but not yet experienced.  The irony is that this assurance of God fulfilling all His promises, of redeeming all our sorrows, of all the days of my life being of purpose and enveloped in a vast and beautiful plan, of putting away death and sin for eternity, this subsequent loosened grip on this life, it frees me up, it gives me buoyancy to more fully dwell here, now, intently, without having to turn away.  I don’t value this world and this life less because my eyes are fixed on the world to come.  No, I am freed up to relish and delight and claim beauty and good where ever it is to be found in this life and in turn to know that it is just a whisper of what is to come.

It is mystery and paradox but my very love of sunlight, of craggy rock and star scattered night, of cool scent of sage, of birdsong, of cytoplasm and nucleotides and whirling atoms, of ocean and whale and storm and tectonic plate, of magnetic pole and bursting suns and waves of the electromagnetic spectrum – they all call out – they all declare and sing and sing of God and I treasure them all and I am giddy before them and they point endlessly to the might and glory of my God. I don’t love the earth less because of my belief in God – I love it more, more, more for it is all His, it is all the expression of His wonder.  And if this is how I may treasure that which does not have spirit, how much more my fellow beings, crafted of but dust, but made alive by the breath of God?

Time is short and I must go.  My words fall short as I try to grasp for words to put some beginnings of dimension and color to this mystery – this agonizing that comes from the thought that we may really soon lose Allistaire and yet – this brutality is all interwoven, caught up in realities far vaster, hopes that sustain the heart that tastes death.

The day has begun and Allistaire is already calling out in pain, pain in her legs and her first dose of morphine.  I have already emailed Dr. Cooper to ask about another CD33 targeting drug (a sort of next generation Mylotarg drug) in clinical trial for adults – could it be an option for Allistaire?  Could we get it on a compassionate use basis?  And you know what – that drug – it comes from a sea hare, from the symbiotic relationship it has with the algae it eats, from some molecule that is formed in its gut.  So you see, even in the midst of the most brutal ravaging, there He is, there is God not waiting to give us life only in the life to come, but in the most wondrous of ways, declaring, I am here!  Look how I love you!  Look how I have gone before you and provided for you.  Look how I have compassion on your suffering.  Look low here and now and behold that I am God – be in awe – see what I have made and if you think this is good, well just wait and see, this is only a tiny smattering of the glory to come.  Come Lord come!!!!!

We meet with Dr. Cooper and Dr. Bleakley at 11am today.

 

Range

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IMG_0335A time between times.  A place between places.  The Bridgers fill the expanse, stretching miles and miles wide before me, foothills reaching out toward the greening valley floor, ridges and draws white with snow echoing lazy clouds above in that bluebird sky.

I’ve already hugged and kissed Sten and Solveig goodbye.  I have yet to return to Allistaire, to take in her giggling little voice, to feel the smooth warmth of her still bald head.

Six days at home.  A home that is home and yet stranger, a home that holds my heart, that taunts with its wonders of ordinary life, pulling the warm clothes from the dryer, matching socks for Sten and Solveig, clothes that encircle the bodies of the other half of my family.  Washing dishes looking out the window at the Spanish Peaks, passing the coats in the mud room where wood smoke still clings its heady scent.  Waking to the rush of wind in trees, bird song and the looming form of Sten still asleep next to me.  Lying down at the end of day with the glitter of stars, from horizon to horizon, faint and bright, haze of star cluster, fiery white bright of planet.  Hills turning from doe to fresh green, drawing the deer in dozens, their forms scattered on the grassy slopes morning and evening, their eyes luminous in darkness of night.  Waving to my mother-in-law as I drive down Bridger Canyon Road and she drives up.  Seeing Jess on the sidewalk with my little nephew, Per, and yes, I should like very much to walk over to the Emerson with you two to see your friend Jen’s new shop.  Hiking the “M” with Hope, watching the pink swath of morning light overtake shadow of mountain and consume the valley with brilliance.  Looking into Jo’s eyes swimming with tears, heaving sorrow for one entire year gone without her beloved, Jens fallen on Beehive Basin a day shy of a year ago.  Hugging Solveig’s glossy brown hair to my chest, joyful for days at home with her, mourning that I must leave her once again.

Twenty-five of thirty-six months spent away from home.  Not only must I leave yet again, but what I’m returning to looms up like oppressive shadows, a chill rushing in, clouds blocking sunlight.  On Tuesday, April 12th, Allistaire will once again go through numerous tests looking for her cancer.  On Day+91 Post Transplant Allistaire will have a PET/CT, Brain MRI, high-resolution chest CT, bone marrow biopsy, lumbar puncture and skin biopsy (to check for GVHD).  The bone marrow will be tested by Flow Cytometry, Cytogenetics, Pathology and for Chimerisms (percentage of donor vs. patient/Allistaire’s old diseased marrow).  In her last round of testing, I was originally told all nine of nine tests detected NO cancer.  A week later, a second review of the PET/CT and Brain MRI concluded that there appeared to be some tissue changes in the area of her right sinus maxillary exactly where there had been disease before.  The changes were not significant enough to allow the area to be biopsied, but could either represent leukemia or her cold/possible sinus infection.  On the 12th, the images will reveal the path ahead, toward health, or ongoing battle with sickness.

There have always only ever been two outcomes.  Either she lives or she dies.  Nothing has really changed and yet, I keep smacking up against the brutality of her possible death.  There seems to be no let up, no lull that does not last but a moment.  When Dr. Burrows called to relay that the radiologists did not think it was feasible to biopsy the spot in her sinuses, I tentatively ventured to ask the looming question, what, what do we do if it’s disease?  That very day I had gone to our Financial Counselor at the hospital to get some updated stats.  To date Allistaire has lived 515 inpatient days in the hospital, almost 25% of her life cooped up within those walls fighting for her life.  Sixty percent of her life fighting her nemesis.  This battle has thus far cost $9,625,000.  Nearly 10 million dollars have been expended to destroy a cell, one rogue screwed up cell that threatens to mindlessly swallow her alive.  The very best of all that humanity has to offer has been brought to bear against this disease.  No expense spared, to weapon denied.  And yet…it still may not be enough.

With hesitation I asked about more treatment, pulling that massive number out into the light for Dr. Burrows to face.  She tells me their focus is not on cost but on quality of life, they consider Allistaire’s quality of life and what may be able to extend that life.  She went onto tell me how the world of oncology has changed in the time since she was a fellow, how in those days no one was ever offered a second bone marrow transplant.  If you relapsed after transplant, there was nothing left, you died.  Then in time they began second transplants, but then never if there were circulating peripheral blasts.  But as research allowed for less toxic transplants and greater advances in supportive care, more and more treatment options became possible because patients could endure what was being thrown at them.  She told me that even as short as a year ago a patient like Allistaire with extra-medulllary disease (chloromas), would most likely not have been offered a transplant.  She told me that in all honesty, to be completely blunt, she did not think that Allistaire would survive her transplant.  She thought surely she would die.  As she sat after dictating Allistaire’s Arrival Conference for transplant, she wondered if they were crazy to offer this transplant to Allistaire, what were they doing to her?

“Jai, she’s defied the odds over and over again.”  Yes she has.  She had no complications in transplant with the exception of a small amount of mucositus in her bottom.  She continued to eat, drink and take her meds throughout.  Her heart held, her lungs did not bleed, her liver remained healthy with no VOD, she had no brain hemorrhage, she did not even ever need TPN.  She discharged in record time, in only 22 days, the shortest escape being about 19 days.  So, what will we do if it’s disease?  The answer is unclear, the way forward a fog.  I requested we sequence the genome of her cancer to get some more possible ideas of how we might target her disease.  The answer arrived a week later, that yes, Soheil had approved deep sequencing to be conducted by Foundation One, and specifically their assay, Foundation One Heme.  Here is a bit of explanation from their website:

“FoundationOne Heme is a fully informative genomic profile for hematologic cancers (leukemia, lymphoma and myeloma) and sarcomas, designed to provide physicians with clinically actionable information to guide treatment options for patients based on the genomic profile of their cancer. It is Foundation Medicine’s second commercially available targeted sequencing assay.

FoundationOne Heme uses comprehensive, clinical grade next-generation sequencing (NGS) to assess routine cancer specimens for all genes that are currently known to be somatically altered and unambiguous drivers of oncogenesis in hematologic malignancies and sarcomas. FoundationOne Heme simultaneously detects all classes of genomic alterations, including base pair substitutions, insertions and deletions, copy number alterations and select gene rearrangements in 405 cancer-related genes. In addition to DNA sequencing, FoundationOne Heme employs RNA sequencing across 265 genes to capture a broad range of gene fusions, a type of alteration that is a common driver of hematologic cancers and sarcomas.”

This genomic information on Allistaire’s cancer cells are then cross-matched with clinical trials and possible targeting drugs; all in an attempt to expand her options for treatment.

The sun is lowering in the sky, rays of light skimming horizontal across rock, illuminating the craggy face of Ross Peak.  As my eyes rest on the timeless grandeur and power of rock and light, my mind hones in on these words, “The Lord commanded and it stood fast.”  Psalm 33:9  “This far you may come and no farther, here is where your proud waves halt.” Job 38:11  My life has felt unfathomably tenuous, the thread frayed about to split and everything scattering.  But this is illusion, this is sensation, this is seeming not actuality, this is seeing through eyes of flesh.  And while this fight dwells largely in truest flesh, it is bound to and enveloped in the voice of God, the voice that calls out all the starry host one by one, each by name.  Because of his great power and mighty strength, not one of them is missing.  God my God is God over all, over every star and wave and cell and molecule and whirring atom.  My life is anything but tenuous, it is secure in the Lord, and it is He who determines its boundaries, its dimensions, its qualities of light and color, of texture and fragrance.  He commanded and IT STOOD FAST!  Yes, yes I am absolutely terrified that Allistaire might still have cancer and I know of nothing left to rescue my girl and it makes me feel like my flesh will explode into a million ragged bloody pieces if this beast takes her down.  Being home in the wonder of this beauty and ordinary makes me long to finish this fight all the more, makes me yearn for wholeness of family and relationships, of rhythms of days and seasons.  The changing light on the Bridgers , shadows lengthening, colors of light intensifying – it all taunts and calls to me, the freshness of cool morning air, grasses waving in wind.  But I gather it all up, a heap of longing and I fall down before my Father, handing it over, entrusting, resting.  You are God.  That is what it comes down.  He is God and I will choose over and over and over to take His hand, knowing He holds all the world and its goings ons there.

What results come from Tuesday’s scans…they come from the hand of God, and by the power of His Spirit at work in me, that same power that raised Christ from the dead, I know, come what may He will hold me up.  He will make my heart sing.

Thank you so much to those who have already tangibly supported our fight for Allistaire’s life in giving to support me in Obliteride. If your heart aches with desire for there to be another open door for Allistaire, for your own battle against cancer, for the beloved flesh of your mom, your brother, your dear friend, please consider supporting cancer research at Fred Hutchinson Cancer Research Center.  One-hundred percent of funds donated to Obliteride go directly to accelerate cancer research.

Click HERE to donate to OBLITERIDE and save more lives FASTER!!!IMG_0285 IMG_0298 IMG_0312 IMG_0316 IMG_0323 IMG_0327 IMG_0336 IMG_0349 IMG_0353 IMG_0354 IMG_0360 IMG_0373 IMG_0375 IMG_0382 IMG_0386 IMG_0388 IMG_0392 IMG_0399 IMG_0402 IMG_0403 IMG_0414

 

Longing

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I was watching a movie…a man trudging through the snow, days and days, months of journeying, comes to the top of a ridge. Out before him unfolds an expanse of evergreen covered hills and mountains with snow, clouds settled in the low lands like a thin veil of blue. Everything in my heart heaved one groaned word, “home.” Oh the longing to go home, it pulls deep. The longing to at long last lay down the battle, to be at rest, to no longer strain, to be in the presence of those who love you, to feel safe, to cease the striving, to release, for all to be as it should be.

I hardly knew it was Easter. I mean the stores made it clear that it was somewhere on the horizon, but suddenly it was upon me, Sunday was coming. And I push aside all the eggs and the bunnies and candy and chicks like so much underbrush, hacking with machete to get where I’m going, to get home. To find rest. How timely that it is Easter for I am in ever so much need of rest. I weary. My heart faints. My face throbs from pain at the relentless tears. My voice feeble, oh Father how I long, long to curl up beside you, to have your mighty arm encircle me. I long for you, for that rest that Easter makes possible. And you stretch out your hand to me and invite me into that rest now. Come now, enter in, abide in Me as I abide in you.

We are in the garden and the serpent seeks to whisper disbelief, to suggest You Father are not really so good, are not really so kind, but cruel, a depriver of what I really need. And I see you there my Jesus, agonizing over what the Father has asked of You, asking if there be another way, oh let this cup pass, let it pass God! And when the answer comes, that No, No this is the only way, You yield. You say Yes to the Father and you lay down Your life. Your greatest work was to rest, rest in the Father, yield to Him.

Oh Christ, our great High Priest, our compassionate intercessor, hold up my heart. Enable me by your Spirit to yield, to yield, to say Yes Lord, Yes, You are good and I will trust in You, I will rest in Your holiness. I will take Your hand and follow wherever You will lead, even if into blackest of night. I lay down my life and it truly feels as if my lifeblood flows out. I am faint, so weak. But will I love as You have loved? Will I lay down my life, my vision for what my days on this earth were to look like, will I say Yes to whatever you deem best to love others?  Oh Father, you see them, you see those dear to me there…across the cavern, I hear their voices as though muddled through water or glass, I reach out but they are too far, so, so far. Will I say Yes Lord, she is Yours, and Yours to take? Am I willing to cross over into that dark, into that wilderness, that wasteland? I have always known this, the stark truth of it always, always looming in the periphery…You call some of Your children to go all the way down that dark road. You draw them into the black. Because only there can You demonstrate, not in word, but in reality, that I will find You in that darkness and You are the God that turns darkness into light.

Lord, I am far too small to say what is right, what is best. I know only that my whole heart longs for You. And I do say Yes to You, I will take Your hand and walk into the black because ultimately I do not despair. I know what happened, what we remember on Easter, I know You said Yes to the Father, You yielded to the Father and You were crucified for it. You were put to death and swallowed into the black. And yet, You rose, You overcame the power of sin and death and the tomb was empty and everything about those three days has everything to do with this day, and all the brutal days behind and the ones to come.

Hear my cry to You oh my God! Many recoil at this faith they find so absurd, so utterly foolish, so offensive. I know only that I love You my God. I have tasted of You and I can never walk away. Hold me tight. Gouge out my heart if You must, but Spirit, teach me the truth of these words of Jesus, “If any man will come after me, let him deny himself, and take up his cross, and follow me. For whosoever will save his life shall lose it; and whosoever will lose his life for my sake shall find it.” You are my hope, my home. You are my resting place, my Sabbath rest. It is only in You and through You that I have life and all will be made right. It is only because of You I have any hope of a gentle and quiet spirit, a spirit gentle and kind because I have been forgiven so much and a spirit quiet because in You it is finished, You sit at the Father’s right hand. All Your promises are Yes, and Your will be done on earth as it is in heaven.

I thought this afternoon I would sit down to write of nine tests showing no evidence of cancer in Allistaire, for in all nine I had word that every attempt to find her leukemia came up with nothing. A brain MRI, a PET/CT, a LP (Lumbar Puncture), ultrasound, peripheral blood chimerism and whole marrow chimerism, flow cytometry, pathology and cytogenetics – one by one the results trickled in over the course of a week. I would not claim victory until every last one came through. And even then, when my sister-in-law asked me if I was excited, I said No. No. We have had clear results before and the cancer has always been there, ever lurking, ever seeking to devour and destroy. I am thankful, of course. I am glad. I can breathe a bit easier, but at any moment, any moment, it could all change again.

I had hoped this transplant would at least give Allistaire time. Time. Time for what? Time for research to catch up with the complexity of these cancer cells that seem ever able to evade, time to design a full-proof weapon, time to make it down the road far enough for some new therapy to intervene before she be swallowed alive by this beast. I had started to dare look down the road, to think about the actual possibility of going home. Maybe she would be alright. Maybe it would actually make sense that I was teaching her to read. Maybe she would live long enough for literacy to matter. She said in the car this morning on the way to clinic, “I wonder if I’ll have babies.” Pain squeezed around my heart. “You probably won’t be able to have babies, sweet girl.” “Why not?” came the sweet voice from the back of the car. “The part of you that makes babies was too badly hurt by your chemo. But you could probably adopt babies.” Her face lit up. She liked the idea of that. And I told her, that if she lived long enough to be old enough to be a mom, that would be amazing enough, she would probably be okay with not being able to grow babies in her own body.

Our schedule only required we come in for her second set of labs for the week. We sat on the bench just beyond the elevators there on the 6th Floor at SCCA, the Bone Marrow Transplant floor. We had checked in and were settling into the wait and to begin our breakfast when Erin the P.A. said that Dr. Burrows wanted to talk to me about her PET/CT results. Instant panic. Instant terror, a swallowing, the world turning black, cold down the neck, drowning, it’s coming, it’s coming, I know what’s coming, I’m going down and like that every hope was snapped off like a dry twig.

We were taken to the conference room and I handed Allistaire my phone with the sound turned off, and she turned to Toca Boca Hair Salon and proceeded to spray the girl’s hair pink and purple and green. And Dr. Burrows came in and looked at my face and asked how I was and I stood there with a great blade struck through my torso, the blood already staining my shirt and the beads of sweat on my forehead and the color gone from my face. And she went onto explain that the while the brain MRI had originally been read as everything being clear, because the PET/CT showed an area of FDG brightness of 4.0 (normal being 3.0 or lower) in the exact area that her chloromas had been, this prompted a second group review of her past and present scans. In short, there are changes in the tissues in her right sinuses, changes that may be because of her significant cold, due to the human metapneumovirus which has yielded phenomenal amounts of snot for the past month, or it could be disease. It could be leukemia. There is no definitive way to tell at this point. We’ll have to rescan in a month. We’ll look again when her cold has cleared and the tissues in her sinuses have had time to return to normal if it really is only the impact of this virus.

Yesterday I woke several times in the night. Ava. Ava. Ava was always there. Immediately. Her name was the first thought formed, resounding, pounding. Then next there was Esther, her mom, my friend, my sister in Christ. Esther. My friend flailing in the water, struggling to catch her breath as the relentless waves threaten to swamp her. And we’ve been texting and she tells me it looks like the tumors are coming back and she cries out into the black, looking for a way through the thick dark, looking for a ray of light to get her daughter through to the other side of this cancer, this ravager of her flesh. And I have no life line for Ava’s flesh and I pray to God that He would work through Dr. Cooper. But to Esther I speak our Father’s promises, I ask His Spirit to speak His words of encouragement, of peace, courage my sister, courage! The very same power that the Spirit exerted to raise Christ from the dead is at work in us!  If even the worst comes to us, our Father will carry us, bind up our wounds.

It is strange to dwell in two worlds, to have your heart so firmly planted in both, the temporal and the eternal.  We’re sitting on the $40 Ikea rug putting together her Elves Lego set she got for her birthday.  I love to watch Allistaire’s face.  To catch the light skimming across the delicate peach fuzz of her deliciously adorable cheek, the perfect little swoop of her nose, her long thick lashes growing back in, the delight in her eyes as she tells me a story, the movement of her lips with voice just so sweet.  I watch her two small hands struggle to get the Lego pieces to fit together just right.  To know her is to know a hundred-thousand million delights.  The thought of losing her, of having her absence an ever-present ache and sting, oh how can we bear up under such sorrow?  How can some stupid little cells take that all away?  Is there really, really nothing we can do to get rid of them?  I think of the life we could have had.  Six years old and what has her life looked like?  And who might she be in the world if she just had a chance to live?

Today is Good Friday, a name that still doesn’t sit right.  I don’t know what would be a better name, maybe Brutal, Wretched, Agonizing Friday?  I can’t stand it when people try to comfort me and brush aside all the pain and the sorrow and focus only on the good.  I know they’re just trying to help, desperate to alleviate some of the sadness.  But this is real.  This is not a movie.  This is not a story.  This is my child.  This is my life.  This is my flesh bleeding out.  And I actually have to live every day looking at my beautiful child’s face knowing tumors may be growing even now, to one day deform and strangle and leave a gaping, ragged hole in my life.  And Christ really did die an agonizing death on a cross because I really have sinned, sinned long and sinned hideously and shaken my little fist at God so many times, spitting on His name.  Those ten commandments – I’ve broken every single one.  And I don’t even have to look out in the world, to Belgium or Trump or some slum in India with little children begging for food, to know just how broken this world is.  I live it everyday in my impatience and arrogance, my selfishness and covetousness, my anger and laziness.  I live it everyday as I scan the details of Allistaire’s labs, and MRI reports and research abstracts and Facebook posts about another friend’s child whose tumors are spreading and he’s losing control of his limbs and his body that was headed toward manhood is growing weaker and weaker.

Good Friday?  It is only good because we know what happened on Sunday and Sunday could never be had we not first lived through Friday.  Easter has everything to do with cancer and it has everything to do with my weariness over having to ask Allistaire for forgiveness again because I tore into her with my words and did not treat her with gentleness and patience.  I wake up from a restless night, neck and shoulders aching, still tired.  And the memory of all the sorrows that I laid down with at night come slamming back into my consciousness with the weak morning light.  But it’s Good Friday and I know because of what happened on that hillside in Jerusalem a few thousand years ago that is not just a story, that His mercies are new this morning.  His manna is here for me to gather today.  He will be faithful to carry me today and every morning I wake up to another day in this life.  Christ Jesus said Yes to the Father and He laid down His life, and it was through this very act that He overcame the power of sin and death.  He found His life because He laid it down before the Father.  So as this day dawns I know death will not have the last word.  My sin will not have the last word.  All these sorrows will be redeemed.  Life will rise up and all our tears will be wiped away.

“Do you not know that all of us who have been baptized into Christ Jesus were baptized into his death?  Therefore we have been buried with him by baptism into death, so that, just as Christ was raised from the dead by the glory of the Father, so we too might walk in newness of life.  For if we have been united with him in a death like his, we will certainly be united with him in a resurrection like his.  We know that our old self was crucified with him so that the body of sin might be destroyed, and we might no longer be enslaved to sin.  For whoever has died is freed from sin.  But if we have died with Christ, we believe that we will also live with him.  We know that Christ, being raised from the dead, will never die again; death no longer has dominion over him.  The death he died, he died to sin, once for all; but the life he lives, he lives to God.  So you also must consider yourselves dead to sin and alive to God in Christ Jesus.” Romans 6:3-11IMG_9246IMG_0257IMG_0255IMG_0247IMG_0239IMG_0238IMG_0230IMG_0229IMG_0224IMG_0219IMG_0216IMG_0215IMG_0131IMG_0183IMG_0188IMG_0193IMG_0199IMG_0211IMG_0119IMG_0115IMG_0110BTIZ2720IMG_9936IMG_0117OMSP2016FICC3705CFNU6254IMG_9925IMG_9930IMG_0041IMG_0040IMG_9905IMG_9902PNPW5709SLGX7998MIOJ4337IMG_9890WBAZ5922NHPA6213APVN6736QVBZ7497ENJE7790IMG_0034FullSizeRender-51FullSizeRender-50IMG_8960IMG_0025IMG_0023IMG_0021IMG_0020IMG_0018IMG_2824

Stirrings

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IMG_2802 IMG_2798 IMG_2794 IMG_2791IMG_2811I grew up in a land of unfoldings.  A land where one must bend low, look now, another unfurling.  A land of delicate magic, intricate.  Stepping over branches slick, footsteps quiet on the soft underfloor of forest.  Ferns unwinding, their beings all folded up tight in complex arrangement, arching their backs, rising toward the light filtering down to them from high in the silhouettes of tree tops.  Little ferns with leaves paper-thin, bright green in direct light, countless shapes repeating.  Fuzzy juicy stalks and delicate sleek black ones.  Mosses creeping, covering like downy shawl a glorious, vigorous green.  Everywhere lush.  I recall making a fern fort once.  Ripping up scores of Lady Ferns, weaving them into walls and overhanging.  I lay down upon the mossy floor and looked up through that scattered light, the greens bright like stained glass.  Ferns and moss, resplendent greens of life unrelenting, delicate yet most resilient.  Two gifts of this earth instantly inciting glee in my heart.  Like Thoreau, I repeat, “I think my own soul must be a bright invisible green.”

And birds.  Oh the birds.  Fat breasted robins calling in the early morning when light has only begun to seep.  Chatterings, bushes alive with tiny throbbing birds.  Evening calls as day calms toward night.  The days are lengthening.  Crocuses and daffodils thrust up from the dirt.  Cherry blossoms pink, forsythia and azalea.  Tiny white clusters like thick stars on the limbs of apple trees.  This is something Washington has that our home in Montana never will.  Spring.  Winter turns almost suddenly to summer in Montana and doesn’t come until June.  But here, in this land, the drear of February, a time when the weariness of winter starts to become intolerable, it catches you off guard…there, did you see it?  Stirrings.  Hints that winter will not forever stake its claim.  In the cold of ground and the rigidness of trees and branches, life still courses.  Somehow what looked vacant, dead, unmovable, is everything to the contrary.  Nay, there is an overcoming, some inner working unseen to my eyes, yet with such vigor as to burst through rock and soil and press out of wood and limb.  A draw from distant lands, a call for the birds to return.

Spring is as sure as anything in this life.  We know it deep in our flesh, our own veins course with anticipation.  An inclining.  An unconscious arching toward light, a yearning to feel warmth of light and freshness of breeze.  Some mineral tang on the tongue that declares life never ceases, though all appears to disagree.  That’s what we’re banking on, that is what moves us through our days.  A hope.  Hope.  Such an overused word.  But no, no.  It is not merely some ancient knowledge that the earth will continue spinning on its axis, marking countless days and nights and a relentless orbit that will always swing back toward sun.  No.  Hope is unique to our humanity.  Hope looks about and not only says, but proclaims, what I see now is not all that there is, there may indeed be more and different.  Hope looks forward.  Hope is the very essence of endurance.

There are stirrings in the woods, stirrings of song and light and delicate unfurlings that press against the dark and the cold.  It makes me giddy.  Giddy that death will never ultimately overcome.  Giddy that the world is arcing in its orbit toward the sun.  Giddy that one day the land will be bursting with life and the sun will rule the day and their will be an unstoppable flourishing.  Abundance will mark life.  No longer scarcity.  No longer mere grasps at survival.  No longer decay and death.  The greens are unfurling.  The birds have begun to call out to the morning.  Spring is that tangible bright expression of the hope that courses through me.

And I have much to be giddy about.  Hope abounds.

The land is wakening and it lightens the step and everywhere there is more to smile about.  And Allistaire is doing just so surprisingly well.  Dr. Sohel Meshinchi, our current BMT (Bone Marrow Transplant) clinic attending doctor, has ended our last several clinic visits with the statement, “I have no concerns.”  This is like balm to the feverish forehead of a cancer parent.  Her labs continue to look great and even improve.  Her red blood and platelets are recovering, with platelet transfusions being spread out to one or two a week, whereas they had been every day to every-other day.  Robin, our clinic nurse the other day said with glee, “Look Jai, look here at her ANC (Absolute Neutrophil Count), it’s normal.”  She looked at me with shining eyes.  Normal.  2,612  What an amazing number.  What a wonder?!  Normal.  Imagine that!!!!  Her liver function numbers have improved substantially and are only slightly high, her kidneys continue to do well and her BNP (measure of heart distress) was down to 119 the other day, a gorgeously low lab value.  She continues to be CMV negative (Cytomegalovirus which can reactivate).  Her weight is good as her appetite improves and taste buds return to normal.  She has begun to eat salad, and even declares its tasty with the exception of the one half of one grape tomato I force upon her which causes her to dramatically grimace and gag every single time.  She skips and paints and rides her bike and sings really loud with her headphones on.

Today marks Day+43 post transplant.  We are still very early in this very long process.  My brother asked me a while back, when we would know if the transplant was successful.  Success is multi-pronged in this situation.  The first mark of success is that she has survived the actual transplant process itself.  Her body and specifically, her heart was not overwhelmed by the cytokine storm of the infusion of the donor cells, nor the hyper-hydration necessary with the chemo.  The cyclophosphamide did not cause the slim but terrifyingly possible acute heart damage.  Her lungs did not bleed nor did she have the brain damage possible with MMF.  Her liver remained healthy despite the increased risk of VOD brought on by several rounds of Mylotarg.  Her graft did not fail, rather Sten’s cells have latched on forcefully resulting in 100% chimerisms.  Her marrow is clear of detectable cancer both by Flow Cytometry and cytogenetics.  Thus far, her transplant has been a success.  It is a beautiful surprise.  Allistaire’s golden birthday is coming up soon and honestly, as I look back, this is the fifth birthday that I never knew would come and had much reason to think it never would.  It is the fifth time we have had cause to celebrate life that might not have been, life that has been relentlessly hounded by cancer.  But hope has continued to mark our days, and now years.

This next phase of transplant continues to be about making sure the cancer is kept away and about being on guard for GVHD (Graft Versus Host Disease).  Every two weeks she gets a LP (Lumbar Puncture) in which Intrathecal Chemo is given and a sample is withdrawn to check for disease.  This means chemo is placed directly into her spinal fluid as it can be a “sanctuary for leukemia,” given the blood/brain barrier that does not otherwise allow chemotherapy to pass through.  While CNS (Central Nervous System) relapse is less common in AML (Acute Myeloid Leukemia) than in ALL (Acute Lymphoblastic Leukemia), the more common form of childhood leukemia, it is still a danger.  She will get 5 LPs in all post-transplant.  So far, her LPs have not detected any cancer in the spinal fluid.  She will also be getting a BMA (Bone Marrow Aspirate), and PET/CT on March 15th.  Typically BMAs are done post transplant only on Day+28 and Day+80.  But for high risk patients they include another intermediate BMA.  March 15th will be her first PET/CT since November and before her last round of chemo pre-transplant.  At that time, her body was clear of chloromas with the exception of those in her sinuses, which had reduced in bulk from the previous round of chemo but were still present along with one new small chloroma.  While her sinuses received 5 fractions of focal radiation and her body was barraged with TBI (Total Body Irradiation) and systemic chemo (fludarabine and cyclophosphamide), I am still nervous about this upcoming scan.  Her cancer has defied countless assaults, its tenacity awe-inspiring and terror invoking.

At this point, there is no evidence of her disease.  I rejoice at this and simultaneously remain on high alert, knowing “no evidence of disease,” in no way means we can confidently say there is no disease.  The other significant issue the doctors and I are ever watchful of is GVHD (Graft Versus Host Disease). GVHD is when the donor cells attack the host (Allistaire), most commonly in the skin, gut and liver.  GVHD is always a concern in bone marrow transplants but especially so in Allistaire’s case because of the much greater mismatch to Sten.  Common symptoms of GVHD include skin rashes, tummy pain which can cause the patient to stop eating, diarrhea, and elevated LFTs (Liver Function Tests).  There is a strange love-hate dance with GVHD.  GVHD can severely impact quality of life and even cause death.  What starts out small can suddenly turn into “rip-roaring GVHD,” so caution and response is necessary.  But the treatment for GVHD has its own consequences.  Immune suppressants such as prednisone and cyclosporine are given to tamp down the aggravated response of the T-cells.  However, not only can these drugs have devastating effects on bones and joints (it’s not uncommon for teenagers to get hip and knee replacements), but the rest of the patient’s immune system is suppressed along with the T-cells causing the GVHD.  This means the body’s ability to fight infection is radically diminished, again sometimes resulting in death from infection.  In addition to the complications to be avoided from responding with medication to GVHD, the doctors actually want some GVHD.  The thing is, when the donor cells are ramped up and attacking the host/patient, there is also the potential for the GVL effect (Graft Versus Leukemia) or GVT (Graft Versus Tumor in non-leukemic transplant patients).  This is the secret weapon of stem cell transplants, an army roving the body to wipe out anything foreign which includes any lingering cancer cells.  The hope of a transplant as a cure for cancer does not rely solely on the intensity of the conditioning, but rather, the more sophisticated element of the transplant is its micro soldiers that infiltrate the whole body and have the lasting ability to eradicate cancer.  This is the  “immunotherapy” element of a transplant.  This is where I swoon.  Don’t you just love it?  And it has taken decades of research to begin to tap these mysteries.

A virus has taken up residence in Allistaire.  Interestingly, it is a virus which even the most sensitive viral tests at SCCA cannot identify, never the less, she has had copious amounts of snot and some coughing.  It is her first cold in over a year at least.  With this virus we have seen what may be a small flare of GVHD, evidenced by a red spotted rash on her cheeks, spreading out from near her nose.  Additionally, there seems to be a bit of a bumpy, slightly patchy pink rash on parts of her arms, back and chest.  I was instructed to watch carefully for its advance both in terms of spread and speed.  When Allistaire received the infusion of Sten’s stem cells (say that 5 times fast), she was given some mature blood cells from his peripheral blood but primarily his stem cells.  Because the mature blood cells she received from her have mostly died out at this point, the immune fighting cells in Allistaire’s body are immature and have never been exposed to pathogens and are presently “uncoordinated” in their assault on this viral invader.  Hence, both the virus and places like her skin are under attack.  Apparently this pairing of having a virus and a flare of GVHD is very common.  In fact, when there is evidence of GVHD, the doctors then go looking for an infection.

The other possible cause of this potential GVHD flare is the removal of one of her immunsuppressants and the tapering of the other.  According to the protocol for her transplant, her MMF was to be stopped at Day+35.  Typically at SCCA they would rather taper the MMF rather than stop it abruptly.  However, Allistaire has clearly and repeatedly demonstrated that she has very aggressive disease putting her at extremely high risk for relapse even now.  Removing the immune suppressants releases the hold on the T-cells which we hope will identify and wipe out any remaining cancer cells. For this reason, the doctors are very motivated to remove all immune suppression as rapidly as is safe to do so.    So about a week ago her MMF was stopped all together.  Then this Monday, 2/22, we began to taper her tacrolimus on Day+41, whereas the protocol calls for the taper to begin on Day+180.  During this tapering process, she will be “watched like a hawk,” as the BMT staff seems to like to say, looking for any signs of GVHD and potentially backing off or slowing down on her taper if necessary.  I am told that in these Haplo transplants, it is more common to see GVHD later than in unrelated-matched donor transplants (probably because of the post-transplant cyclophosphamide).  More typically, acute GVHD is seen around Day+60 and later.

There is in the transplant world a magic number.  One-hundred.  One-hundred days is a song, like some mantra, some enchantment, a mystical goal out there in the fog.  The standard is that, baring any serious complications, a patient’s Hickman line is pulled on Day+100 and is allowed at long last, to return home.  I haven’t calculated the date exactly, but I know in Allistaire’s case, Day+100 is somewhere around mid-April.  It’s out there.  The date I avoid, I skirt around.  I only allow it to linger in my periphery.  I will not look it straight on.  I am too well acquainted with disappointment.  I keep my head down and we trudge on, willing ourselves not to be tired, not to be discouraged.

In August 2013, I was told in the most direct way, that Allistaire’s only chance for survival was a second bone marrow transplant.  At that time, she was only Day+50 post her first transplant.  You must wait an absolute minimum of six months between transplants to even have a chance of survival.  For us that meant December.  December was impossibly far off and the idea of going through it all over again was the most overwhelming moment of my life.  People say the day of diagnosis is the worst.  I most heartily disagree.  When you are diagnosed, most of the time you have a plan, a means of response, hope that you can make it through.  But what about when you’ve done the thing you came to do?  You tried the big gun.  And it just didn’t work.  It wasn’t enough.  And now your foe is even stronger than when you first began because it has mutated and become resistant at the very same moment that you are at your weakest, your most worn-down.  But then Allistaire went back into remission with one round of chemo and there continued to be no more evidence of her disease as she completed a total of seven rounds of chemo post transplant.  So when the day came for her one-year post-transplant follow-up and all looked well, I kept quiet.  I was so very tired you see.  I never asked about that second transplant.  I just smiled and let myself finally feel a bit at ease.

Looking back, I understand the depth of that woman’s fatigue, but part of me screams, “You fool!”  What if we had done that second transplant then?  Her body was in great shape.  No heart failure.  No evidence of disease.  A perfect time really for a second transplant.  But I didn’t ask.  I was tired.  I just wanted to run as fast as could out of that cancer world and have a shot at normal life.  Well, really I can’t remember if I asked or not.  But even if I did, I must have accepted that answer.  I’m not going to let that happen this time, no matter how weary I may be.  I keep pressing the question.  What are we doing to help prevent relapse?  Okay, okay, we’ll do that, but what else can we do?  What about this?  What about that?  As with so much in the world of cancer treatment, we are dealing in the world of utter unknowns.  Dr. Meshinchi told me today that Allistaire’s specific MLL (Multi-Lineage Leukemia) translocation where chromosome 11 just broke off and attached to another chromosome, is unique among the 3,000 pediatric AML samples he has in his database.  There is no data to say what someone is Allistaire’s very unique situation most benefits from.  And every form of treatment has the potential for side-effects and the question is always, are those potential risks worth the unknown, untried benefit?

For now the plan is this: we will rapidly taper off all immune suppressants as fast as possible while trying to avoid GVHD in any severity.  The hope is to allow the T-cells to have the brakes taken off of them and allow them free reign to roam wide and vigorously to eliminate any remaining cancer cells.  Ironically, if there is no evidence of GVHD, we are planning on a bold move, rarely attempted, to elicit a GVHD response.  The goal is to be off of all immune suppressants by Day+100 and if at that time there has been no evidence of GVHD, Allistaire will be given DLI (Donor Lymphocyte Infusion).  DLI is an infusion of just lymphocytes from Sten.  There are probably enough stored cells from his stem cell donation to get the necessary number of lymphocytes.  If not, he can do a simple blood donation which would not require GCSF shots because it would not include stem cells.  These donor lymphocytes would be infused into Allistaire in hopes that the white-blood cell hunters will recognize Allistaire as foreign and go on the war-path.  Soheil does not recall them ever trying this “prophylactic” DLI approach.  DLI has been given in the context of minimal residual disease in hopes to wipe out tiny bits of cancer, but never or very rarely when there is no actual evidence of disease.  If she were to get DLI and it was well tolerated, she would be given a larger second dose about a month later.  This also means that we have a good chance of having to be out in Seattle longer.  It is all a matter of waiting and seeing.

A few weeks ago I found myself feeling extremely down, baffled and frustrated with my deep sense of sadness.  We had just been discharged from the hospital and moved into our apartment at Ronald McDonald House.  Allistaire was doing amazingly well, yet I could not shake saturating sadness.  It was an act of will to hold back the tide of tears threatening to swamp my little boat.  Perhaps like a runner in an ultra-marathon, having finally made it through transplant, I found all my reserves of energy come crashing down.  I felt tired to my very core.  When I tried to force myself to look up, all I could see were the sad, tired faces of my friends who have lost their children.  I kept thinking of Stevie and Lilly reduced to ashes.  How many?  Sara, Ruby, Mario, Benton, Jaxon, Tristin, Christian, Pantpreet, Nolan, Jordan, Marleigh, Howie, Cyrus, Zach, Karlee, Bella, Lilly, Stevie.  These are the children who have died in the time Allistaire has been in treatment – children and/or their parents that I have known – not even close to the total number that have died.  These are the faces I have known.  Though I have much to rejoice in with Allistaire’s progress, it has sometimes felt like her death is inevitable, just a matter of time.  Sometimes my whole vision is consumed with the bright faces of children gone still.  Home and a life freed from the grips of cancer sometimes seems like an impossible dream.

But there are stirrings see?  Whisperings.  Eyes a blaze with zeal.  Minds whirling with ideas.  Happenings.  Little discoveries and victories that are starting to turn the tide.  As the earth has reached the furthest reaches of its orbit, it has begun its journey back toward the sun, the earth warming and throbbing with life, unfurling.  There are stirrings too in the world of cancer research.  Great wonders have begun to be revealed.  While it has literally taken decades and decades of research to get here, there is now starting to be a new world of promising cancer treatments which look in and down to the genetic level, down to the world of molecules.  Immunotherapy, in which the intricacies of a patient’s own immune system is harnessed to track down and obliterate cancer while sparing healthy cells, is making incredible advances.  Like a wild-fire that starts with a mere spark, so it seems is the world of immunotherapy.  There is hope that the world of cancer treatment is on the verge of a tremendous revolution.  There is hope that we are on the cusp of seeing a future for cancer patients that will look radically different from that dominated by the standard weaponry of chemotherapy and radiation.

Right at the center of this immunotherapy revolution in cancer treatment is our much beloved Fred Hutchinson Cancer Research Center.  Check out this article from The Huffington Post that tells about the successes of Dr. Stanley Riddell of Fred Hutch which has yielded amazing results: putting cancer patients who have failed all other forms of treatment into remission at staggering rates using T-cells.  Everywhere I turn at Fred Hutch there are new amazing trials and areas of research underway.  Allistaire’s clinic attending, Dr. Soheil Meshinchi, and our dear Dr. Marie Bleakley are working on designing TCR T-cells that target highly specific proteins found only on leukemic cells.  I sit and ask Soheil question after question and listen with mouth gaping, on the edge of my seat, eager to hear where the world is headed.

But there have also been moments as I’ve sat in wonder that I also find myself grieving.  All of these advances are far too late for the eighteen children whose names I listed above.  Much is even too late for Allistaire.  Just four years have passed since she was first diagnosed and already the treatment of AML has changed.  There are new tests done at the point of diagnosis to better determine what course of treatment works best with the individual’s unique disease.  There are new treatment options that simply did not previously exist. It was only in April 2012 that the very first child was treated with genetically modified T-cells.  I wonder what it would be like if Allistaire were diagnosed today, rather than four years ago.  How much better would her chance of survival be?  I also hear Soheil mention over and over again, “it’s a matter or resources…if we had the resources…”  Resources!!!!!  Sometimes I want to scream.  So you mean, if you had the resources you could do this and this and this and give my child the treatment she so desperately needs?  But you see, resources are scarce and government funding has been in short supply.  These very brilliant, intelligent brains that should be devoting their time and energy to research, to what their good at, have been having to run around trying to scrape up money to keep their labs going, to find a way to pay to design that test, that piece of equipment, get the research from the lab to treatment in the clinic.

You know what I want to see?  I want to see cancer research accelerated so that fewer kids and moms and brothers and friends have to have their lives cut short.  I want to see treatments that actually cure! I want to see treatments that cure without poisoning hearts and kidneys and brains!  I want to watch in wonder as scientists learn to use our very own beautiful, wild, amazing immune systems to obliterate cancer.  And science is science – all these advances in understanding the genetic base for not only cancer, but for so many diseases, and how to make genetic modifications and therapies promises to benefit lives touching each one of us!

I’m going to get on my bike again this summer of 2016 and ride to accelerate research, to save lives faster, to obliterate cancer.  I’m on Team Baldy Tops again this year in Obliteride and I’d love to have you join us!  Come on out the weekend of August 13-14th and ride with us.  There are routes for every skill level, from 10 miles to 150 miles.  If you’re not up for riding, you can still join our team as a virtual rider and raise funds for cancer research.  And easiest of all, you can donate!  One-hundred percent of all funds raised in Obliteride go to cancer research at Fred Hutch!

Hope is being able to imagine a world that looks different than it does now.  The cold and dark of winter is turning toward the bright zeal of spring.  One day kids diagnosed with cancer won’t have to die, but can be cured and go on to flourish in this life.  One day your mom, your wife, your sister, your daughter won’t have to fear breast and ovarian cancer and having to make the brutal choice of whether or not to cut out chunks of her womanhood.  One day you won’t have to watch your dad whither away or lose your best friend.  While my ultimate hope for life overcoming death rests in Jesus Christ and His promises of redemption, resurrection and a new heaven and a new earth, it is joy to see His grace in this lifetime as this vicious disease has begun to meet its match.

I will ride in Obliteride again this year because I will forever be indebted to Fred Hutchinson Cancer Research Center.  Allistaire would not be alive today were it not for the research, the clinical trials and the treatment she has received through Fred Hutch.  I ride in gratitude for my child’s life.  I ride in sorrow for the children I’ve known who have died.  I ride in hope for cures for cancer!

Check out this great video of Allistaire promoting Obliteride, now showing in movie theaters in the Seattle area.

Donate HERE to support me in Obliteride to end cancer!

Check out all the details at Obliteride.org

See what Obliteride looked like last summer and catch glimpses of our awesome Team Baldy Tops

Learn more about Immunotherapy

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Cacophony

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IMG_2600Cacophony

Disparate.  Discordant.  Dissonance.

Turning this way and that, buffeted, battered.  Every angle met with contradictory force.  Joy, relief, yellow, bright splintered through with black, tears.  Flashes of bodies warm gone cold.  Flashes of giggles and bright eyes and stiff bodies born down hallways blocked from the eyes of the living.  Friends gone.  Gone.  Turning east, car seats empty.  We should NEVER go east without those faces in the rearview!

And I sit in sunny room, a palatial expanse, hum of the dryer and a sudden home, a grocery list and kitchen utensils and a recipe.  Sixteen months and the first meal cooked.  Not microwaved.  Not to-go styrofoam from a restaurant.  Ceramic plates.  Glasses.  Imagine: a refrigerator, a stove, a sink, a table, a child, all in the same room.  No flights of stairs to run up and down to heat up yet another hotdog.  For the first time in sixteen months, I sat in a cushy chair in the early morn, coffee and book in hand.  Wonderment.  Grandeur.

I walk out into that cool of night, crystalline stars blue and white, sparkling, not trite but truly, they sparkle.  How long since I looked at stars?  There, Orion’s belt.  Stars countable in a city sky.  I walk the 30 feet from the Ron Don Apartments solely for those patients discharged from bone marrow transplants, into Ron Don’s House A.  A familiar face and a story.  Kidney failure from a culprit whose name I know so well, drawing its milky substance into the syringe, three times every day, waking her every night at 2am.  “Allistaire, Allistaire.  Wake up sweets.  It’s time to take your med.”  Up she rises in the dark, half-asleep, trusting, mouth open.  And little John, little John.  “But I thought they went home?!” my voice a near quiet wail.  He bled out.  Just blood everywhere.  But, but…his platelets?  No, they were high enough.  His clotting factors then?  No.  No.  His cells just broke open.  He bled out.  Another family swept away east, empty-handed.

I stumble back through the night air, to my spacious abode, to my bald-headed girl.  Bright.  Cheery and spinning.  And I draw up the meds, again and again and she opens her mouth.  Trembling at the huge chunk of magnesium.  Shaking at the sight of that fish oil capsule.  But you must.  You must!  Press forward, rush at that pill before it gets the better of you.  Defy it.  Don’t look at it.  Don’t think about it.  Just do it.  Put it on your tongue and swallow!  Can you not hear the pounding of some monstrous hooves?  The breath hot and rancid on your neck?  The flying of rabid saliva.  Run Allistaire!  Run child, run!  We must keep running, I silently wail.  And the ashes of children, children whose voices I have known, ashes of eyes that once were bright, falling, falling all around us.  Ashes on our cheeks, ashes in our hair.

And upon the wall I’ve hung the art, the endless rainbows of color.  The cheery felt flags and the string of butterflies.  I’ve purchased bins, bright taffy pink bins with lids, little woven bins of lemonade yellow.  The lip glosses go here and the legos there.  Spread out the new Ikea rug across the cold faux-wood linoleum.  Set the picture frames upon the tables and cozy up to lamp light.

We escaped.  Maybe.  But who are we that we should be any different?  Who am I that I should be allowed to keep my child?  I watch the eyes of my friends.  I reach out and know they are impossibly far away.  They dwell on the other side of that gulf.  People say, “So, one-hundred days huh?  And then you get to go home, right?”  You see, I never imagined we would even make it to this day, this twenty-eighth day post transplant.  Allistaire’s done so well, she discharged from the hospital last Wednesday, February 3rd, in near record time.  A mere twenty-two days post transplant and after a short 46-day inpatient stay, Allistaire walked out of that hospital into the light and air of the outside world.  And I felt relief and awed shock.  How?  How did it go so well?  How was it so incredibly easy?

The very next day our out-patient life began with a full day of clinic appointments at SCCA (Seattle Cancer Care Alliance).  I hadn’t prepared my heart, just read the times dictated to me.  Go here, go there, at this time she’ll get her blood drawn, meet with the nutritionist, the social worker, the pharmacist, the nurse, the attending physician.  Yes sir, yes ma’am.  We do as we’re told, we open our mouth and move our feet to their instruction.  I’d forgotten the stares.  The stares of adults with cancer taking in the image of a small girl, bald like themselves.  A sort of horror and wonder in their eyes as they take in the smooth curve of her cranium, little blond hairs sporadic at her crown and nape, tubies peeking out from under her shirt.  I’d forgotten the sight of great swelling cheeks, cheeks that no obesity could fashion, cheeks like grapefruits, the effect of steroids unmistakable; steroids the primary defense against GVHD.  She seems to have made it out alive from transplant, but there it is, staring us in the face, the next beast threatening to devour and the perverse desire for it to come.  Yes, GVHD (Graft Versus Host Disease), you are welcome here, we invite you, come, come devour, come eat alive the ever-present threat of those mutated cells.  And I gag at the thought.  GVHD can kill.  Kill outright or kill by slowly stealing away quality of life.  And yet, not even radiation on par with a nuclear blast, not round after round of ravaging chemo is enough to trust those bastards are gone.

Walking in the doors of that building, going to the 6th floor for the transplant clinic…it all comes sweeping back, a flood of memory, the terror that rose, water to the neck.  Abrasive, the memories admonish, don’t let down your guard, don’t feel at rest, muscles stay tense, eyes alert, edgy.  When is it coming for her?  When will it strike again?  Only 50 days after her first transplant in June 2013, her cancer showed itself again.  Will we ever, ever be rid of it?  Will this crazy life ever end?  And you tell yourself to shut your mouth.  Your friend, whose hand and the cold hand of her daughter you held, tells you she would given anything to be in the fight again, just to have her little girl with her.  So don’t you dare weep for the ravages of your life, for she is with you!  She is here!  But will it ever end?  Oh God, must it end that way to end?  She had her Day +28 bone marrow test yesterday and her chimerism test to determine what percentage of her marrow is her own and what is donor.  How long might we enjoy this reprieve?

Dr. Cooper saw her in the hallway yesterday, and said, “She just looks SO good!”  Words echoed by many, many that have walked long on this journey with her.  Yes.  Her eyes sparkle with glee.  You should have seen the enamored wonder in her eyes as she spun in her new room, her own room in our Ron Don apartment.  “I was squealing getting into the car,” she tells me, “all my dreams are coming true!” she grins.  I cried when I walked in the door of our apartment for the first time, less than an hour after hugging Stevie’s parents, Keshia and Michael, and grandmother, Linda, goodbye, knowing they had one last stop before traveling east on I-90.  They were headed to pick up Stevie’s ashes.  And I was headed into a new apartment and post-transplant life.  Tears that they had a U-Haul trailer full of Stevie’s toys, toys to pack away in a storage unit, and I, toys to pull out of boxes to set up in anticipation of Allistaire’s joy.  Tears that we have this gift we’ve done nothing to deserve.  Tears that this present lull in no way guarantees we have escaped the same outcome.  Tears for a home that is not home.   So weak the prayers, “Oh God.”

Allistaire is doing wonderful so far.  She has clinic days at SCCA each Monday and Thursday, with frequent lab draws in-between due to the ongoing need for transfusions, especially platelets which are the last to recover.  She engrafted on Day +20 with an ANC of 2050.  Her ANC has since dropped due to no longer getting the GCSF (Granulocyte Colony Stimulating Factor) infusions, but today was 630.  Allistaire has not had an ANC that high for nearly a year and a half.  Her medications continue to be adjusted as drug levels are taken and electrolytes change.  She gets 35 doses of meds per day which include the immune suppressants tacrolimus, and mycophenolate mofetil (MMF), hydrocortisone to compensate for the insufficiency of her adrenal glands, acyclovir to protect against certain viruses, voriconazole to protect against fungus, dapsone to protect against pneuocystis, ursodial to protect her liver, fish-oil to reduce her high levels of triglycerides, vitamin D supplements and a multivitamin.  For her heart she takes hydralazine, isosorbide dinitrate, carvedilol, lasix, spirinolactone, magnesium supplements and Entresto.

Her higher ANC betrays the true weakness of her immune system.  Because her transplant wiped out her immune system, it also wiped out the immune effect of the vaccinations she has received, with the exception of chicken pox because that lives in the nerve cells.  It will take an entire year for her immune system to fully reconstitute.  Only then will she be able to get re-vaccinated, for the third time in her life.  For this reason, for one year post transplant she is not allowed to attend school nor any event or go to any location with a high density of folks.  We venture out with caution, at off times, mid-day, mid-week when we must go to the store.  She cannot dig in the dirt, cannot frolic in the grass, must avoid house plants and all sources of fungus.  Her food must be more carefully washed and cooked to avoid food born illnesses such as E. coli, Salmonella and Listeria.

We walk forward in hope, though it is not a bright and refreshing hope.  It is the hope of the hunted.  It is hope that there may still be a way through, though the dangers great.  It is a hope permanently stained with images of those who have fallen, images of tear-stained faces of friends, bodies lining the road behind.  It is a hope that feels a bit crazed and frantic, a panting from hard running.  It is a hope that yearns for a day when this fleeing may cease and a weapon will have been crafted that can be thrust deep into the heart of that beast, killing it forever.  For now, we strain forward, seeking to feel the warmth of sun on our faces, never taking one moment of life and bounty for granted.  My prayers are short.  “Thank you God.”  Thank you for this ice amazingly ever available in this freezer.  Thank you God that every time her platelets drop there are platelets ready to replace the empty space.  Thank you God for an oven to bake cookies in.  Thank you Father for that giddy joy she has as she places the chocolate chips in the pancakes.  Thank you God for the hope that we will see Solveig soon.  Thank you God that Allistaire is almost 6 years old.  Thank you that though we have been chased relentlessly for four years, her life has tripled from what it might have been.  Thank you God for every time I get to hear, “I love you Mommy.”

And I cry out to the Lord on behalf of those who have lost their little beloveds.  Oh, Lord.  Oh Lord.  Have compassion.  May your Spirit go out from you and dwell within those broken, bleeding hearts.  Comfort with the comfort that only You can yield.  And do not turn away from this ravaging, God!  Come quickly!  Bring an end to this brokenness.  Redeem the loss.  Raise the dead.  Bind up the wounds.  Put an end to the curse and bless.  Wipe away the tears.  We are expectant for You!

And Father, though we run as those chased, let us simultaneously find our rest in You, our only home, our very life.  May times of refreshing come to my heart, dependent on You, not on changed circumstances.

My friend lost her baby girl the day before she was to be induced.  She had to push out a child not breathing.  Only months later she learned she had cancer, at just about the same time she found out another child was on her way.  Now there is a bright, smiling baby girl in her life and tomorrow she finds out if her cancer has stayed at bay.  Her longing is that she might be singing when the evening comes, no matter the results.

Yes Lord.  May we sing out, even as tears stream down, let us bow low and worship and fix our eyes on You.

(Got a call yesterday evening with Allistaire’s bone marrow biopsy results…0% detectable leukemia by Flow Cytometry and 100% Donor Chimerisms in both the peripheral blood and marrow – this means only Sten’s/Donor’s cells are detectable and nothing of Allistaire’s old immune system, including her cancer, is detectable at this point.  What an incredible grace of God.  Thank you.  Thank You Lord!)

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We’ll Miss You Sweet Stevie Girl

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After a two-year, hard-fought battle against Acute Myeloid Leukemia, Stevie’s little heart stopped early Friday evening.  She was such an incredibly spunky little girl, whose sass was evident not only in her relationships with family, friends, nurses and doctors, but also as strength and tenacity in fighting hard against her cancer for so long.  Yet in the very end, Stevie at long last ceased her struggle and ended her four years of this life in sweet peace.

I longed to sing over her a blessing, yet my voice and words failed me.  Stevie comes to me in bright snapshots of joy.  She was a little girl whose bright spirit made me want to come down close so I could see into those shining, laughing, mischievous eyes.  The sweet smallness of her voice made you want to lean in and hear anything and everything she had to tell you.  Yes, Stevie, show me again how your tongue can reach all the way up to your nose.  And off they’d go, she and Allistaire racing down the hall, glee in their eyes.

Other snapshots cut like a hot blade.  There was her pole.  Just standing there outside her door.  Empty.  Devoid of lines.  No longer attached to her.  Strange how strange and out-of-place it looked standing there alone and empty, abandoned.  I hadn’t realized until that moment how the IV pole of a child with cancer is almost like some bizarre extension of themselves.  They are rarely without it.  They are unable to do the simplest tasks without it.  That pole must accompany them to the bathroom, to the bed, to brush teeth, to go for a walk.  And there it was like a bashful naked girl standing all alone, out-of-place, making no sense at all standing out in the hall with nothing to do.

The double stroller slammed my heart when I caught sight of it in the corner of my eye.  Oh, oh.  A stroller for Stevie and Finlee, a stroller meant for two.  I knew the car seat would sit staring back empty in the rearview mirror.  Stevie’s absence its own presence.  When I walked out of their room at Ron Don I happened to see Stevie’s bath toys.  The little wind up mermaid, identical to the one Allistaire has.  The clip-on Disney princess dresses just like those Allistaire plays with.

Keshia and Michael had to wake up today for the first time in nearly five years without Stevie, without her right there where she has been for so long.  How can you care for a child every minute of every day for years and then just wake up without them?  To care for a child with cancer is an attention to detail that defies description.  All your motherly senses are on constant high alert.  You attend to your child with an unwavering intensity, always taking in every single nuance.  Nothing escapes your notice and you mull these bits and threads of information, tiny nubs of data, over and over in your mind, examining from every angle, breathless that you might miss something and that ragged toothed beast will find its way in and tear at your child’s flesh.

The days behind have been long, long, long and wearying, tear filled and have flown so fast, not nearly enough, and joy that just makes you hope for more time to know, to love, to delight looking into those eyes.  The road ahead is long, long, long.  From this point forward, every day will dawn without Stevie and  all of Keshia and Michael’s life will be oriented to some degree along this line, this dividing line of with Stevie and without Stevie.  No words will ever, ever undo the death of Stevie.  No words can erode this loss or dampen the pain.  But may we each, who have loved Stevie, never cease speaking her name, recalling with joy our memories of her.  May we grab those snapshots and hug them round, not shying away from them because of the pain, but allowing the deep hollowing wound to bear witness to how great a bounty it has been for the world to have held Stevie in it.  May we be faithful friends to Keshia and Michael and may Finlee’s childhood be filled with stories of her big sister whose life overlapped with hers for only a few mere weeks.

Thank you compassionate-hearted folk, you who know Stevie and Keshia and Michael and those who have never met them, all who look in on this sorrow and say, we love you and we stand by you as you mourn.  We mourn with you, heavy grief that we live in a world where Stevie no longer dwells, grief that children die of cancer, of just so much brokenness.

Keshia and Michael, and little Finlee, are back at Ronald McDonald house as they wrap up their time here in Seattle and sort out what’s next.  For those who have signed up for meals, thank you so much for your generosity of time and resource.  If you have signed up for bringing dinner, it would still be a great help for Keshia and Michael to have dinner delivered (details below).  However, they will not be needing lunches given their need for flexibility to be out and about during the day.  Financial assistance is still a great way to show love and support as they make travel and housing arrangements in the days ahead.  From this point forward, please direct your giving to their “www.YouCaring.com Stevie Strong,” site.

Blessings on your sweet head Stevie.  And from Allistaire, who loves you truly, a blow kiss…

Please deliver dinners to Ronald McDonald House A (5130 40th Ave NE, Seattle, WA 98105), under the name “Stevie Rasmussen.”  It’s helpful if you let the front desk folk know that the delivery is food and request that it be refrigerated.  The house staff will leave a message on their room phone to inform them of the delivery.

Sweet Stevie (Updated on How to Help)

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Updates on How to Help at the bottom of post.

“I still can’t believe this is happening.  What I’ve feared most for the past two years is becoming reality.  I’m having to watch the most precious thing in the world to me die.  I seriously don’t know how to move forward, nor do I want to.  I will miss her sweet voice and beautiful smile so, so, so much.  Always wondering what she would have been like as the years pass without her in my life.  This is truly the most awful feeling in the world.”  Keisha, Stevie’s mom

Stevie’s marrow and peripheral blood are full of leukemia.  She has a serious bacterial infection that also infiltrated her Hickman catheter, requiring her line to be pulled.  Her breathing is fast, 70-80 breaths a minute.  Her fevers are constant.

Stevie’s parents, Michael and Keisha, had to make the brutal decision yesterday to stop any further treatment.  All the monitors are off.  No vitals are being taken.  She has limited access to get meds in because IV team is unable to place a line.  At this point, there are no more chemotherapy options for Stevie, so advanced is her disease and infection.  She is incredibly uncomfortable but is being provided the best pain management available.

The room is dark and the bed laden with more girlish colors and patterns than you can imagine.  Keisha longs to pull Stevie into the curve of her body but Stevie feels so “yucky,” that she only wants the constant sensation of her legs and body being rubbed, tender hands ever-present.

Stevie’s baby sister only came out into the world three weeks ago.  So little time for two sisters to know each other, to bond.  As one is just arriving, the other is departing.  The pain like your rib cage being torn open with blunt force.

Not nearly enough tears will come.  I think about Stevie and her family clustered in that small room; all day and night they enter my thoughts.  It is like watching a version of your own life.  Like Allistaire, Stevie was almost the same age when she was diagnosed, just two years old.  Both diagnosed with Acute Myeloid Leukemia.  Two little Montana girls.  Their room is across the hall from ours in Ron Don.  They have matching unicorn pants.  In the stunted confined way that is the only possible way in this strange labyrinth of pediatric cancer, Stevie has been Allistaire’s closest friend.  I can picture perfectly where I stood at St. Edward’s State Park when I first learned of Stevie’s story.  I can still see her fantastically chubby legs the first time I met her in person soon after she was diagnosed.  I remember so clearly pulling off to the side of Kelly Canyon Road before I lost cell reception to hear news of Stevie’s relapse.  So many points stand bright and vivid, in part because they have been so like our own.  In part because Stevie is a wild cat, full of glee and mischief and just straight up adorable.  There is so much to love about that girl.  It seems incomprehensible that the world can exist without her.

As her family, mom Keisha, dad Michael, grandmother, aunt and baby sister dwell minute by minute through all the minutes left for Stevie, I am yearning to care for them in any way that is possible.  There is nothing any of us can do to stop the careening path Stevie is on, but what I want to do is to support their ability to remain together in that room as a family and specifically to take away the time-consuming task of figuring out meals.  This is where I’d like to ask for your help.  It is my goal to have all meals covered for Stevie’s family for the coming days.  If you would like to show tangible love for them, please see the details below on how you can sign-up to bring a meal, give money to contribute to meals and/or give money directly to Stevie’s parents.

Thank you for all of you who so faithfully pray on our behalf.  I ask that you would do the same in this agonizing time for Stevie and her family.  I pray that the Spirit of God would bring Stevie comfort.

***Updated Thursday morning 1/28 @ 10:45am

Thank you for your overwhelming response in wanting to help!!!!  There are three main ways to do this:

1.  For those of you in the area that want to provide a meal, please follow this link to Take Them A Meal and sign up to bring a lunch or dinner for four adults.  Enter the last name Rasmussen and password stevie2016

Meals can be dropped off at the River Entrance front Security Desk at Seattle Children’s Hospital (4800 Sand Point Way NE, Seattle, WA 98105)

Not too spicy as Keisha is nursing, just enough for a meal as they have limited fridge space to store extra food, and they only have access to a microwave so please supply food in easy to use portions and cut anything requiring cutting as they do not have access to kitchen utensils.  Please review what others are bringing so you don’t inundate them with too much of the same type of food.  No one wants to eat lasagna 5 days in a row, no matter your circumstances.

2.  If you’re out of the area and want to give money to help provide meals, you can do so through this link Square Cash.  Online you can only use your debit card.  If you get the iPhone or Android app you can use either a debit or credit card, though there is a 3% fee for credit card use.

If you’d like to send a check, please mail it to Ronald McDonald House, Attn: Allistaire Anderson, 5130 40th Ave NE, Seattle, WA 98015 and please write “Stevie” in the menu line to make it clear that you are giving for meals for Stevie’s family.

 Any money that may be raised that exceeds the amount needed for meals, I will give directly to Stevie’s mom and dad, Keisha and Michael.

3.  I am sure Keisha and Michael will have many expenses in the coming days and weeks on top of the financial strain of the last two years, so if you would like to give directly to them, you may do so through their Stevie Strong You Caring site.

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Transplant Day+8, well now +12

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IMG_2524Were it not for the last 24 hours I would have chosen a different title for this blog post, but the past day has been such an odd contrast to the preceding seven days that I can state only that we are eight days into this thing.

The first seven days of this transplant have been marked with Dr. Bleakley being remarkably smiley and saying on several occasions that Allistaire is doing better than she thought she would.  This in turn has made me smile a lot as well!  When Dr. Cooper stopped by briefly yesterday to check in on us, he was taken aback that when asked how I was doing, I responded, “Ecstatic.”  Because, really, really, it is simply still a startling wonder that transplant has happened.  What happens going forward is simply a matter of having to accept and respond to.  No longer is there the great weight of, “will we make it to transplant, will this stop us?”  Even her heart, though of course we want to continue to vigilantly care for it, no longer is a barrier to moving forward with this radical intervention of therapy.  And as I said, the week has gone amazingly well.

Allistaire’s fever on the evening of her transplant was the first of about six.  Blood cultures are drawn every 24 hours within which there is a fever and all continued to be negative for any evidence of infection.  In addition, despite wrapping up her Flagyl therapy for C-Diff, she actually had increased diarrhea.  The fevers and diarrhea, Dr. Bleakley told me, is evidence of the cytokine response happening within as Sten’s cells entered a foreign environment.  Dr. Bleakley was quite pleased with this degree of cytokine storm as it was evidence of an immune effect happening but not one that raged out of control and seemed to impact her heart.  Though all of this did make for some rough nights for both Sten and Allistaire as there were countless poopy diapers to change.

On Friday morning, January 15th, Allistaire had an echocardiogram and EKG to serve as a baseline going into getting Cyclophosphamide/Cytoxan and the associated hydration used to counteract the common side effect of bladder bleeding.  Her function remained consistent with the previous echo done in mid-December, though her heart was very slightly dilated (2mm).  Dr. Law was pleased with how she had weathered the first storm of this transplant.  Her heart rate had also been quite elevated (150-160s) for several days which could not be accounted for by any measure of her heart function.  He assumed it was related to the oncological realities happening with the fevers and cytokine effect.  Indeed, once the cyclophosphamide wrapped up two days later and the fevers subsided, her heart rate down-trended nicely to 100-120.

Friday and Saturday she received one dose of cyclophosphamide each day in addition to hydration at 1.25 times her maintenance rate.  Additionally, she was required to urinate every two hours with the urine being tested for blood.  Thankfully, other than once when her platelets were very low, she either showed absolutely no blood or only the most trivial amount.  The possibility for an acute cardiac hit was also monitored by tracking her BNP (Brain Natriuretic Peptide), a measure of heart distress, and troponin levels, which are evidence of heart muscle cell death.  Thankfully, so far her troponin level has remained essentially undetectable which means there is no evidence of heart muscle cell death and her BNP has been low.  A repeat echo was conducted on Monday and showed a slight decrease in heart function with an ejection fraction down from 42 to 37 and a slight additional increase in dilation.  However, the cardiologist remained please with how well she had tolerated all of the hydration.  Allistaire showed absolutely no signs of burden from what she went through.  Her lungs have been clear and all clinical assessments have continued to be excellent.

The plan was to move Allistaire upstairs to the cancer unit after one final day in the ICU after the end of hydration.  So yesterday afternoon we moved back up to the cancer unit into the very room we left a week prior; a room with a great view, Forest 7 room 219.  Tuesday had been a day mostly spent waiting to move upstairs and by 4pm she was finally settled in for a nap in her old room.  I headed out of the hospital for a few errands and just before 6pm got a call from the nurse that Allistaire had a raging nose bleed.  I could hear Allistaire hysterical in the background.  She had a horrific nose bleed back in November which was increasing her terror with what she now faced.

While I was on the phone, driving back to the hospital as fast as rainy congested streets allowed, I made sure to ask that platelets had been ordered STAT!  Yes, yes the word came.  When I walked into the room there were countless bloody tissues and the sweet BMT PA, Agne, attempting to help Allistaire with holding her nose.  I took over nose clamping duties while we waited desperately for platelets to come.  An hour passed and I kept being told the platelets were on their way, almost here.  Allistaire was settled for a while with me clamping her nose with shocking grip.  I was actually in awe that my hand muscles could keep up with the demand on them.  For a while Allistaire had calmed and quieted but then with absolute terror in her eyes she shot up and screamed that she needed to throw up.  What came out can only be described as what it might look like to hurl out of your mouth a gutted-animal, so thick and plentiful was the curdled and clotted blood (see very last picture at end of post).  It was horrifying to watch that projecting out of her mouth.  She cried and screamed and I’m sure must have felt like she couldn’t breath with her nose clamped and huge wads of blood filling her throat.

The platelets were still supposedly coming but were never arriving.  I found myself getting madder and madder, sadder and sadder.  To quote the movie, “Home,” I was “sad-mad.”  I hated that my little girl had to endure such horrors; not just the repulsiveness and scariness of this, but the reality that her own body is under constant attack from a disease that destroys the part of her that is supposed to protect and sustain life.  Yet, I was so very thankful that help was on its way despite taking a ridiculously long time.  As I sat there clamping Allistaire’s nose, trying to calm her, trying to press down my own angst, I harkened back to reading about the realities of leukemia prior to the 1950’s, in a time before platelet transfusions.  This is well described by Dr. Emil J. Freireich, who “still can’t forget his first exposure to childhood leukemia, the heart-rending and terrifying fatal cancer his boss instructed him to cure.  Freireich, then a hotshot young researcher whose only knowledge of pediatrics came from medical school, took over the care of kids with the disease, kids with all manner of lumps, bruises, headaches, infections, fevers and, most of all, bleeding that Freireich says made the hospital unit ‘look like a butcher shop.’ Ninety percent of them were dead in a week.  ‘You cannot imagine how horrible it was,’ says Freireich, 88, nearing his 50th anniversary at M.D. Anderson Cancer Center. ‘These were 3-, 4-, 5-year-old kids bleeding to death, bleeding out of their ears, eyes, nose, skin and bowels, bleeding internally, vomiting blood. It was a parent’s greatest horror.” (Legendary Oncologist Returns to The Limelight)

Finally, two hours later the platelets came; a simple little bag containing a minimum of 150,000,000,000 platelets.  Sometime ago I learned that platelets are not actually true cells but are produced within a large cell called a Megakaryocyte, each of which can produce two to five thousand platelets.  And until Dr. Freireich discovered that lack of platelets were what caused the horrific hemorrhaging and then developed a method to transfuse platelets, children with leukemia never even had a chance to really have their cancer treated, they just bled out and died rapidly.  In reading up more on Freireich, I learned that he was also the first to have the idea to transfuse granulocytes and to develop a means for accomplishing this.  He co-invented the continuous-flow blood-cell separator, was part of the research group that first began to use antibiotics empirically to control infection and determined that you start to bleed when your platelets reach 10,000 – this is the same threshold used today over fifty years later.  Perhaps most significantly, Dr. Freireich and his closest collaborator, Dr. Frei (both had the first name Emil if you can imagine that?!), were the first to use aggressive doses and combination doses of chemotherapy to attempt to cure Acute Lymphoblastic Leukemia.  They were met with extreme opposition but persevered and succeeded!

If I had my dream come true, I would sit down before Dr. Emil J. Freireich and attempt with all my heart to say thank you.  Over and over my child’s life has been sustained because of his direct efforts and accomplishments!  Thank you Dr. Freireich, before Allistaire was born, even before I was born, you labored endlessly in the face of incredibly opposition, belittling, and in terrible conditions because you were determined to find a way through for these kids.  You don’t know her, but my little girl, Allistaire Kieron Anderson is alive today because of you!  You!  Her life is part of the fruit of your labor and once again I find myself deeply and joyfully indebted to total strangers.  There is a yearning in me to thank this man, to look into his eyes, or perhaps to even attempt a great hug to say thank you a hundred-million times over.  Allistaire might as well have been pulled from a burning house by a stranger, but not just once, over and over and over.  I often find myself dumbfounded, gaping in the mouth of all we have to be thankful for, the magnitude of our abundance staggers!

And it continues!  We had a few bumpy days but made it through.  After the raging bloody nose on Tuesday night, Allistaire finally got all settled in bed for the night.  I stood at the foot of the bed while the nurse drew some labs and I happened to have the monitor in sight when all of a sudden, Allistaire’s heart rate jumped from about 100-110 to 208 with a ragged tight swath of crazed up and down peaks of her heart rate.  In a second it was over and I asked out loud, “what was that?  I have never seen that!”  I asked that Allistaire’s electrolytes be checked, thinking that with all that blood loss, they might be wacky and this can throw off the rhythm of your heart.  The hospitalist ordered a STAT EKG and electrolytes were checked.  Everything seemed normal with the exception of a lower potassium, but nothing crazy.  So we went to bed finally around midnight.  After waking repeatedly every hour for diapers and the nurse coming in, the doctor woke me about 4:45am to say there were going to call a RRT (Rapid Response Team).  This is where a risk nurse comes and evaluates your child and determines whether or not more intense intervention is necessary and the child is often transferred to the ICU.  What prompted this was another episode of what the monitor called, “VTac,” which refers to Ventricular Tachycardia.  Because VTac can be very dangerous, Allistaire was transferred to the ICU where they could better monitor, and actually record for later review, her heart rhythm.  So only about twelve hours after moving to the cancer unit, down to the ICU she went, into the same exact room, Forest 6 room 321.  Good grief.

The next morning she had an echocardiogram to determine if there was any decrease in her heart function.  A more dilated heart is more likely to have arrhythmias.  Because she had thrown up a total of 450 ml of blood and the cardiologists want to keep her hematocrit above 27, red blood was ordered and got underway.  And despite getting a transfusion of platelets the night before, because it was decided to raise her transfusion threshold from 10 to 50 to really stop the bleeding that might not only be in her nose, platelets were also ordered.  So the red blood was paused while the platelets went in but the red blood expired (it only last 4 hours once the bag is spiked) before there was a chance to get in anymore than 60ml.  Her hematocrit was checked again and it was down to 19 (standard transfusion threshold is 20 so this was exceptionally low for her).  Blood was ordered once again.  Throughout the day Allistaire was extremely tired and not at all interactive.  She was incredibly worn out from the nose bleed trauma, a hectic night with countless interruptions, and a very low hematocrit.  Our nurse had expressed several times how she just didn’t seem like her normal self.

We were hoping to get her blood started and down for a nap when the nurse discovered a tiny pin-prick of a hole in her red lumen.  IV team was immediately called to repair the line and to also place an IV so she could get blood and meds that obviously couldn’t wait the 24 hours the line is out of commission while the glue in the repair sets up.  Despite much screaming on Allistaire’s part, another nurse was able to place an IV in her hand and off she went to sleep, the blood flowing in.  About two hours later, our nurse called me to tell me, “your girl is back and wants to talk to you.”  Allistaire jumped on the phone and immediately you could hear the difference.  Blood.  Blood!  She was alive!  The little worn out girl who’d lost her spunk needed blood!  Hey, have you donated blood recently?  Ever?  Perhaps this will sound pushy and rude, but really, if you say you love Allistaire, if you say you want to know what you can do to help, anything, well then, give blood!  Allistaire would never, ever have a bit of chance to fight this cancer if it were not for the countless blood transfusions she’s received because real people were willing go give of their time and endure a wee bit of discomfort to give something from within themselves that can literally save people’s lives.  Isn’t that wild?  Can you cure cancer?  Can I?  Probably not, but she has no chance to try to see if this treatment works if she doesn’t have blood!  Enough already?  Maybe.  And please, those of you that honestly can’t give blood…you lived in the U.K. for some period of time or were in a malaria laden country or whatever disqualifies you from giving, fine.  No worries.  I’m talking to all of you out there who can give blood and either are afraid or haven’t managed to find the time.  Please.  Please, for Allistaire, for so many whose lives could not be sustained otherwise, make a point to do it now!

Late in the afternoon the cardiologist finally came by to report that Allistaire’s heart function was totally stable, identical to the last echo.  He talked with me at length about why he believed that Allistaire was probably just fine and suspected that what had actually occurred could have been SVTac, or Supraventricular Tachycardia, which is also an irregular heart rhythm that begins much higher up in the heart and is far more benign than VTac.  She had no more episodes of irregular heart rhythms and he felt that by the next morning she should be able to safely go back to the Cancer Unit.  I was so incredibly relieved.  Just to ensure one more measure of caution, it was decided Allistaire would wear a Holter Monitor for 48 hours that can, in a much more detailed way, record her heart rhythm.

Once again we made the transition from the ICU to the Cancer Unit, back into our fabulous room 219 which they had held for us.  With the concern for Allistaire’s heart fading a bit, the issue of her line came to the forefront.  Allistaire was complaining a lot about her hand hurting where her IV was placed and when she kept screaming when the nurse tried to flush the line, it was determined that it had to be removed and another placed.  In the mean time, the nurse attempted to flush the newly repaired red lumen on her Hickman Catheter, but to no avail.  She could hardly get anything to flush through and she certainly could not get blood to draw back.  So she put a dose of tPA (Tissue Plasminogen Activator) in the line and planned to wait an hour before trying again.  The IV team came and after two failed attempts to get in an IV, they left for a while.  The nurse then tried to flush and draw back blood again from the line but it still wasn’t working.  At this point Allistaire is really worked up because she knows that if her line doesn’t work then she’ll have to get more IVs.  And indeed, IV team came back, this time successfully placing an IV in the hand which is the same hand she sucks her thumb.  She was horribly sad.

Then out of the blue I am told the ultrasound tech is coming to look at her line.  At this point I’m totally confused because just the day before they did an X-ray to look at the positioning of her line with the concern that if the tip of the Hickman catheter is too far down into the ventricle of the heart, it can cause agitation and in turn stimulate an arrhythmia.  Turns out the purpose of the ultrasound was to look at her vasculature in her neck and chest to determine where a new line could be placed.  Before I knew it I was talking to the surgeons, signing consent and talking with the anesthesiologist about surgery for a new line to be placed the next day on Friday.  All the while I was thinking, “HOLD UP!!  Let’s just slow this thing down a bit and see if we can’t get this line working.”  The BMT PA was concerned that because the line was so old, that the repair wouldn’t work and we needed to get moving on planning for a new line placement.  Understanding her point but being none too pleased about the idea of Allistaire having surgery with no white blood cells to fight infection or about more cuts into her already scarred up body, I asked that we please try more tPA.  This time it was left for two hours and it worked beautifully!  Allistaire was beside herself with excitement that the IV was coming out.  And her line has continued to work great and surgery was scratched off the week’s T0-Do’s.

Despite some rocky, odd days, Allistaire is doing phenomenally well!  She is closer and closer to a true baldy top as most of her hair has fallen away, leaving only her signature blonde fringe at the hairline around her face and a scattering of hairs on the rest of her head that sort of makes her have a bit of a glow.  She’s happy and hilarious.  Her mouth sores have mostly healed and she’s able to take all of her meds by mouth with the exception of those that can only be given IV.  She’s drinking her required fluids each day and eating enough calories to not need TPN (IV nutrition).  Her labs and vitals have been great, lungs are clear and her heart seems to be doing well.  Her really only struggles are keeping her platelets high enough to avoid nose bleeds and the mucositis in her bottom.  Because radiation and chemotherapy are most effective at killing rapidly dividing cells, you lose your hair and the cells that line your digestive tract all the way from your mouth and out the other end, are damaged and die.  So for Allistaire, it hurts really bad to urinate and poop.  A urine sample tested negative for a UTI and for BK virus (Bladder Kidney Virus) which is what leads the doctors to believe this is just mucositis that will take time to improve.  All in all she is just doing amazing!  She tested negative for C-Diff today which means she is now only in Contact Isolation, not Contact-Enteric Isolation, which allows her at long last to leave her room and go for a walk around the Unit.  So for the first time in three weeks, Allistaire had the freedom to walk the halls of the Unit.  When the front desk Unit Coordinator greeted her by name, Allistaire raised her hand in questioning and said, “How did I get to be so famous?”  Oh my.

We have twelve days of transplant behind us.  Dr. Bleakley estimated that Allistaire would “engraft,” around Day+21.  Engraftment is when the stem cells, infused into the peripheral blood, have migrated to the bone marrow and begun to reproduce.  An ANC (Absolute Neutrophil Count) of 500 two days in a row is considered official engraftment.  This is a bit longer of a time frame than you would typically expect in a Peripheral Stem Cell Transplant, but because she received Cyclophosphamide on Days+3 & 4, the timing gets elongated.  But once her cells start to come in, she will finally have white blood cells that begin to repair the damage done by the chemo and radiation.  Of course this is also when you can begin to see signs of GVHD (Graft Versus Host Disease).  Her first bone marrow test will be on Day+28.

I am pretty much in awe of how things have gone thus far.  I am so very thankful for each day we are able to walk forward.  But my heart remains heavy, not just for Allistaire, but for other moms dear to me.  At this time I think of my friend Julie Guillot, whose son Zach, was undergoing his third transplant for AML at this time of the year two years ago.  His liver ended up suffering from VOD/SOS and he died in the ICU of internal bleeding on February 7, 2014.  She and Zach walk these halls in my heart with me.  I think of sweet Stevie up in a darkened room on the 8th floor.  Fighting a raging bacterial infection and her marrow and blood full of leukemia with her newborn baby sister in the bassinet next to her, while her mom Keisha attends to her every need and her dad is back in Montana working to provide for his family.  Keisha and Stevie might as well be Allistaire and I.  What happens for them feels deeply personal to us.  We hold them tight.  I think of bright Ava who lives in Chicago, and who like Lilly did, fights bi-phenotypic leukemia which means her leukemia has characteristics of both ALL and AML.  A year after her transplant, trace amounts of her disease has returned in her skin and marrow.  Her parents strive to know what the Lord would have them do walking forward.  I think of dear Heather, who everyday must live without hearing Lilly’s voice.

Yes, Dr. Emil J. Freireich contributed enormously to the fight against leukemia and is credited with a lot of why you’ll hear leukemia has a 90% cure rate.  But not all leukemias are the same, and AML is a beast far, far different than ALL.  Around half of children with AML will die.  There is still a long, long way to go to get to such an amazing prognosis for children with AML.  Won’t it be amazing one day when we reflect on these early years of the 21st century and talk about how it all changed, a world where most kids with AML died and then tenacious cancer researchers refused to give up, they pressed on despite all the obstacles.  Won’t it be absolutely beautiful when treatment for AML doesn’t break hearts, literal and figurative?!

“For their parents, it was agony.  In order to have a chance at life – they were told – their child had to be brought savagely and repeatedly to the brink of death.”  Malcolm Gladwell, “David & Goliath”

So true.  We walk forward into dark terrors because we have no choice, no alternative.  I hope desperately that in the next fifty years, cancer treatment will look nothing like it does today and it won’t have such holistic ravaging effects.  Lord hear our prayer!IMG_2402IMG_2405IMG_2416IMG_2431IMG_2432IMG_2442IMG_2444IMG_2445IMG_2447IMG_2455IMG_2459IMG_2477IMG_2486IMG_2497IMG_2500IMG_2505IMG_2510IMG_2512IMG_2525IMG_2527IMG_2528IMG_2507IMG_2508IMG_2509