Tag Archives: Leukemia



12107786_10153431748189667_4156990417936886173_nWith only half an hour before Allistaire would be done with school, I ran to the 5th Floor PICU, sweating in my shirt and wool sweater, boots heavy.  With sweater stripped off, I donned the ugly pale yellow gown and one blue glove.  As I drew back the curtain and entered the room, heat slammed through my body, my hand shaking as I struggled to get on that last glove over a hand slick with sweat.  All strength left my legs; I felt as though I might collapse.  What here?  What is happening here?  But the reality was glaring, my eyes closing against the intensity of the scene before me.  Breath caught in my throat, gagging.  The family so gracious, holding onto me, arms around steadying.  Who am I to be comforted when before them lay the unfolding of all of our worst fears, this brutal culmination of years and years of struggle?

But I had been in that room only two days before.  We knew it was bad.  She was breathing fast, her little chest heaving in rapid expansions.  The fungal infection could get worse before it gets better the infectious disease doctors had said.  It seemed it could go either way, but of course, we hold out hope, she had already overcome so much, so much.  But now, the way was clear.  Her mom and dad huddled around her, straining with all their flesh and heart and spirit to attend to her, this small girl the magnetic center of that room, all bodies and faces turned, intent, alert, stunned and mourning.  They would do anything, anything, anything in all the universe to care for this precious, beloved little girl.  Her dad adjusting the oxygen, a little here and there, her mom rubbing her tummy, speaking words of love to her daughter, declarations of how proud she is of how bravely and hard she fought, but now, now, little love you can rest, rest.

It was agony, I felt my heart being gouged out.  Trembling, tears flowing but utterly insufficient to bear the tide of sorrow, just plain core sadness, pervasive, total, absolute.  I glanced up at the monitor, her little heart pounding a hundred and sixty, a hundred and seventy beats a minute, a sprint, a desperate determination to keep her going.  The nurse bends in low and Heather asks if it’s near.  The end will come, but it is not yet very near.  I have to leave, I have to go get Allistaire.  Someone asks where she is and I say school and the contrast of my little girl, bright and bursting with life enjoying school felt so awful in light of the struggle playing out before us in this little room packed with family and machines.

How many times did Allistaire and I run into the two of them?  How many times did we stand talking in this hospital, mirror images of one another, mother and small daughter ever at our sides, Heather and Lily, Allistaire and I.  Ever coming and going, endless appointments, infusions, transfusions, labs, victories and defeats and always hope, always the determination to keep walking forward, hoping and praying for the next open door.  We made sure Dr. Cooper knew that when he talked to one of us, he was talking to a group of powerful women, mothers with whom he would have to contend.  We will share information, we will question and push for more, we will exert our force against the barriers and call for more, more for our sweet little girls.  And here, here in this moment their paths diverging, this little girl’s veering off to death, so swift, a force unstoppable, the speed suffocating, bewildering.  When did it all turn, when was the last time things were “normal?”  When did she last declare with her darling, little voice, “I love you mommy.”

I had commitments the next few hours, I would try to come back.  The pink never left my cheeks, a flushing like overdone blush.  My socks cold from sweat and shirt soaked, everywhere adrenaline drenched cloth.  I shed off those clothes and prepared to go back, back into a room where I imagined she was likely already gone.  I wanted to go, I wanted to be there for my friend, if only to stand witness to her pain, to honor her daughter’s sweet spirit, but, oh how I didn’t want to intrude on so private a space.  I was welcomed in.  The two of them lay in the bed.  It had been a few hours since Lilly’s heart finally gave out.  She looked merely asleep, her chest still, tucked into the curve of her mother’s side.  I could only gasp, “oh, oh…”  Heather called me over and I sat there on the bed with them, her small, cool hand and her mother’s warm hand clasped between the two of mine that could not stop trembling.

Through stuttering heart and mind, I fumbled to call out to the Lord.  Oh Father, Father…we are so small, so very small and weak, so frail in this dust, this life that comes and goes like a vapor.  Have mercy Lord, mercy, remember that we are formed of mere atoms, and yet, yet…we are of infinite value, staggering beauty, eternal beings because you have made us in Your image.  We mourn so mightily because we grieve for more than flesh, more than cancer cells and heathy cells and donor cells, we cry out for we will desperately miss this little bright spirit, this eternal being, this little child, Lilly.  And here we sit, in this deepest dark of the year, as the earth veers toward Winter Solstice, our hearts groan in the dark.  Our chests heave in agony, in the weight of this broken world, so devastatingly broken. Isis and ragged, desperate refugees, shootings everywhere…broken bodies ravaged in an attempt to eradicate disease threatening to consume.  Yet we wait, we wait expectantly.  It is the season of Advent, of anticipating the coming of Christ, the promised Savior, God Incarnate, Emmanuel, God with us.  Christ who came in frailty and would die in frailty.  And yet, in His very death, when He seemed the weakest, He in fact demonstrated His incomparable might and holiness, Jesus Christ overcame sin and death – He overcame.  In this pressing darkness, hope, hope and a promise of resurrection, of redemption of all our sorrows, of a world healed and whole, with no more tears.  Oh, Jesus, in you we place all our hope.  Though my flesh it be destroyed, yet with my eyes I shall see God!

As Heather stroked Lilly’s gorgeously soft strawberry blonde short little hairs, she looked at me with eyes weary, glistening with tears, but clear, clear.  “You know, Jai, you know how you wrote about being able to imagine a good life with Solveig even if you lost Allistaire?  I can imagine a good life with my boys, always an absence, but a good life.”  She spoke of peace, peace and rest that this fight at long last has come to an end.  No more fighting.  No more struggle.  “Yes,” my heart repeats.  This is the exact scenario Dr. Cooper has warned us of, “going down in flames from an infection in the ICU.”  It has been like living out a scene from our own lives.  It could have just as easily been Allistaire, it may still be.  But there is peace, rest that you went just as far as you could go.  You press forward, slashing the limbs before you, a barrage of barriers, you hack your way forward.  How does one give up on these bright, flashing little girl spirits?  Lilly, Stevie, Allistaire battling that foe AML with ferocity and wild resiliency of childhood.  Can we as their mother’s give up?  Can we hand them over?  We will no let up, we will not cease our straining forward until at last the time may come when there are no more doors.  Rest, rest in peace sweet child.  You need struggle no more.  You have been released.  Yet, having borne witness to this day, I am all the more determined to walk forward.  Yes, this too may be the end of Allistaire, but like Lilly, we will fight to the last, and then, then when the time comes to rest, rest.

I lifted her hand, kissed her little fingers.  I rose from the bed and stood in the circle of those who have known and loved and cared for Lilly all of her eight years, through all of her eight years of battling this menace, leukemia.  I looked in on sacred ground, intimate, precious moments.  Lukkes, Lilly’s big brother, had climbed into bed next to his little sister, Heather’s arm encircling two of her children.  “Is today December 4th?” he asks?  “No, no I think it’s the 3rd.”  Silently I gasp knowing how this date will be ever deeply imprinted on each of their hearts, this line between a life with Lilly and a life without her.  I glanced up and was struck by the sight of the IV pole, encumbered with numerous pumps but everything dark, the syringes of meds still attached, but at the floor a tangle of tubing and stickers, disconnected.  The monitor black where once bright green and pink and blue lines and numbers flashed declaring details of life, of a beating heart and breath.  The child life specialists had taken casts of hands and a silvery print of her hand now adorned a clear glass ornament.  They worked in silence, in reverence.  Callie, who delights to play with Allistaire and to whom Allistaire rushes to hug, was now in this room carefully preserving tangible memories of the body of a little girl with whom she had played.

Some three hours after Lilly’s spirit left behind her broken body there in that room, Heather’s sweet sister, Heidi, leaned over and gently asked Heather if she was ready.  A quiet “yes.”  I don’t know how she did it.  How did she will her muscles to flex, to move the distance away from Lilly, to form that gap of space between Lilly’s side and her own?  My heart, already tattered, seemed to find new depths of ripping, deep agony.  Was not Lilly’s body formed within Heather’s own?  And had she not all her days cared so fiercely, so tenderly, so utterly for Lilly, flesh and spirit?  Where did Heather end and Lilly start?  The overlapping of beings, how to pull apart that which is integral to the other, woven through all layers…Heidi moved into the warm place left by Heather.  And then, Heather leaned in low, looking into her daughters closed eyes, holding her hands, telling Lilly of her tremendous love for her, of the honor it has been to be her mother.  Her father, John, head down on the bed, hand clasping her arm.  Somehow they stood.  Somehow they turned.  Heather reached for her coat and the orange parent hospital lanyard, an encircling of orange she would likely never again have to wear.

I kissed her cheek.  I had to go.  I looked down and saw I was the only one wearing the yellow gown and the blue gloves.  I was the only one in the room with a child still to protect, a child utterly vulnerable, whose immune system had been laid to waste by chemotherapy.  I stripped them from me, carefully washing my hands, aware of the danger of spreading C-diff from Lilly to Allistaire.

How do you leave the hospital without your child?  How do you even walk out of the room?  The next day I drove into the parking garage to take Allistaire to school and to clinic for labs, to see the doctor and get platelets.  Many times throughout the night I woke up and there were Lilly and Heather.  She will never again have to drive into this cold dark garage.  Walking through the halls, through the worn paths between clinic and Ocean Starbucks, past the gift shop, up and down the same stairwells, like hallways of your own home, I was struck…we will never again run into Heather and Lilly.  I remember clearly the corner on the 7th floor where we first met, where Heather stopped me and asked if I was Jai.  She told me recently that she had prayed fiercely for Allistaire when she was in the ICU, long before we first met.  In fact, her whole family was praying for Allistaire.  The truth is I am wildly thankful she no longer has to bear this burden so dominating it overshadows everything else.  Now she can give attention to her two boys and husband who’ve had to stand in the backdrop for so long.  No more labs, no more numbers to dictate your life, no more endless hours in small rooms, closed off from the rest of the world, isolated.  It feels like betrayal to speak such things, and yet, what mother can choose between her children?  There are two young boys who also need their mom. There is relief in no longer having to choose.

My heart is with you dearest sister, strong, beautiful, tender Heather.  You have crossed over that line.  You have faced a hundred thousand terrors.  You’ve endure so much.  Our Lord has upheld you through countless trials.  And yet before you lies a new landscape, a land with new dangers, woes, joys and opportunities, open doors.  Lilly will always be a part of you.  You will always be the mother of three children.  You will always bear the deeps scars, the wounds of this hard road.  And yet, it is my sincere hope that from these losses, these searing tears, beauty will rise up, life will unfurl from death, that the Lord will be faithful to redeem.  We wait in the darkness, anticipating the coming light, remembering the first coming of Christ, frail, small, a child.  We cry out for His return as powerful King, with the creation we groan, we long for that day when we will wait no more, and all His promises will have been fulfilled.

“Through many dangers, toils and snares, I have already come.

‘Tis grace has brought me safe thus far and grace will lead me home.”

Then I saw “a new heaven and a new earth,”for the first heaven and the first earth had passed away, and there was no longer any sea.  I saw the Holy City, the new Jerusalem, coming down out of heaven from God, prepared as a bride beautifully dressed for her husband.  And I heard a loud voice from the throne saying, “Look! God’s dwelling place is now among the people, and he will dwell 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 order of things has passed away.”

Revelation 21:1-6




IMG_1346Jens died.  Two words that I cannot comprehend fitting together.

My sweet brother-in-law, Jens, Sten’s youngest brother, died on Saturday skiing with their older brother, Peder, and two friends.  A relatively small avalanche swept him over a cliff and was dead when Peder found him a minute later.  Here are the reports:  Bozeman Daily Chronicle      Montana Avalanche Report

Here is a recent video account of the accident by Gallatin National Forest Avalanche Center

I flew back to Bozeman yesterday and will be here for the week.  The memorial service for Jens will be this Saturday, April 18th at 3pm at Journey Church.  I hope to get more details out soon for those that live in the area and want to help.

Below is a post I started a week ago.  I will leave it for you as is.  It is about needing to grieve, about needing to be given permission to let loss be loss, weighty, aching loss.  Whether in sudden death or long tortuous demise, the loss is real and we must give room and allow the dark to be felt, the ravaging pain to sear.  There is hope, there is beauty but please, don’t cut short deep cavernous grief.   It is in truth, a strange accounting, a survey of all that was good, that was treasured and dear.  To cut that off, to force its dilution is in fact requiring one to forgo assessing the bounty.  Let the sorrow come, the tears flow and flow, the gut ache, let every joy past be remembered and every future, earthly joy lost, be mourned.

My fingers shake this morning as I call the hospital from my kitchen counter in Bozeman.  Once again I fear the numbers.  With an adjustment of meds, Allistaire’s heart has actually once again improved after a drop two weeks ago.  Two Mondays ago, her Ejection Fraction dropped to 23 (previously 35) and so she was put back on .3 of Milrinone, the Isosorbidedinitrate-Hydralazine was dropped and a very low dose of Carvedilol was added.  The idea is to keep her at .3 for a while and maximize her oral cardiac meds.  Her Ejection Fraction last Monday was 34.  She is set to get another echo this morning and today her BNP is 369, a beautifully low number. So I am hopeful that her heart may continue to slowly improve.

What has my hands trembling are her dropping blood counts.  We are mere days from the end of this 28-day cycle of chemo and yet Allistaire’s ANC today is 18.  It has continuously dropped over the month, and this in the face of a chemo that is not supposed to significantly suppress blood counts.  The other concern is her rising Uric Acid and Phosphorous numbers which can be a sign of tumor lysis, specifically leukemia.  A flow cytometry test was done on her peripheral blood last week looking for leukemia.  Thankfully the test came back zero percent leukemia.  So the question is, are these dropping blood counts from a severely weekend marrow that collapses at the slightest insult and the electrolyte numbers askew from the result of other meds?  Or are these all evidences of a marrow packed with leukemia cells, not allowing healthy cells to grow.  We will soon know.  On Tuesday she is scheduled to get her first bone marrow test since December.  The cardiologist feels that the improvement in her heart function makes the risk of anesthesia reasonable.  The procedure will be done in the OR with the aid of the cardiac anesthesia team because the risk is still greater than it normally would be.  Depending on the timing, we should hear results as early as Wednesday evening.  If Allistaire handles the anesthesia well, a PET/CT will also be scheduled.

I already had a plane ticket to fly out here for this coming Wednesday night, not having the bone marrow test yet on the radar.  Once it was scheduled, I realized that this could be a wonderful week with good news, or a devastating one.  If Allistaire’s marrow has a significant amount of cancer, at most we might have one last round of chemo to try.  Or we may have nothing left.  Despite all of this, she herself is full of joy and life and delight with long luxurious lashes and the softest light brown fuzzy hair.  We have been up on the cancer unit for a week, enjoying a fantastic view and the joy of familiar loving faces.  She has not been in pain and is eating okay, throwing up just every now and then.  My wonderful parents will be with her for the week.  I am blessed to have their amazing help.

And then without warning, without the slightest hint of foreshadowing, a sickle came hard and fast and swept away the life of Jensy.  Who can understand these woes?  Lord we call out to you even as we know it is You who determines our every single day, from first to last.  I find myself once again standing with Peter.  Many of Christ’s disciples and followers walked away because of His, “hard teaching.”  Jesus asks Peter if he too will leave.  Peter responds, “Lord, to whom shall we go?”  The ways of the Lord are past understanding, sometimes all seems just brutal.  But to whom shall we go?  To what truths will we cling?  Some are not necessarily content, but more content to live with the unanswerable, because much is unanswerable.  Yet, as for me, I stand with Peter who went on to say, “You have the words of eternal life.  We have come to believe and to know that you are the Holy One of God.”  For Christ’s words are spoken to us all.  It is true, there is an element of leaping to faith, to my faith.  There is a choosing to trust in an unseen, an unprovable.  But my faith is not blind, it is a faith with eyes wide and roving, seeking, alert and my eyes have seen the Lord and so I walk trembling, but fixed on Christ.

Hebrews 11:1-3 & 13-16

“Now faith is confidence in what we hope for and assurance about what we do not see. This is what the ancients were commended for.  By faith we understand that the universe was formed at God’s command, so that what is seen was not made out of what was visible…All these people were still living by faith when they died. They did not receive the things promised; they only saw them and welcomed them from a distance, admitting that they were foreigners and strangers on earth. People who say such things show that they are looking for a country of their own. If they had been thinking of the country they had left, they would have had opportunity to return. Instead, they were longing for a better country—a heavenly one. Therefore God is not ashamed to be called their God, for he has prepared a city for them.”

I rejoice that Jens is with the Lord in that heavenly country, and one day we will be reunited with him and see our Lord with unveiled face.

Post started last week:

I eye the stairs with envy, with desire.  They are swept, brushed clear of the tens of thousands of millions of pink petals, fallen like decadent snow from the cherry trees that frame the stairwell.  Time and rain and thousands of feet turned them into brown decay, so quickly replacing their fleeting soft tender beauty.  To stand in the cold spring air and sweep, step after step, cherishing and loving the temporal beauty, not condemning it for failing to live on, nor accepting its smeared muck as beauty any longer, pure pleasure, contented joy.  Joy for the fleeting beauty and acceptance of its passing.

Allistaire’s body moves slowly across the bath tub floor, delighting in the strange sensation of buoyancy, so long missed in the PICU with nothing but wee plastic baby tubs in which to bathe.  Tears prick my eyes and ever the simultaneous push and pull to give in to them and hold them back.  Sometimes I yearn to just be allowed to cry and cry and cry.  Cry without end.  Weep and cry out with face distorted by sorrow without caring who cares or who sees.  It comes to me that I would choose Allistaire again, even if I knew it meant this, all of this.  I would choose her again if such a thing were mine to choose.  I take in her small body with the quarter-inch of light brown fuzz, blonde along the hairline, her lashes long and dark, the scars and the white tubes protruding from her chest draped above the water and wrapped in Press ‘N’ Seal meant for left overs in the fridge, not life lines.  I wish to be left to cry without having to restrain, without feeling the responsibility to balance with gratitude, without having to consider another’s assessment of me, of my grief.  I don’t want to have to explain, to tell you the countless tales that have formed this mountain, this deep pit of grief.  I don’t want to need to substantiate my rightful place to feel my flesh ripped off.

But there it is, you see she is still alive and I know I have much to be thankful for but it feels like unless I stand before a grave, I am compelled to look for the light, the life, the joy, as though I have no right to see the darkness, to call it black.  And I do look for light and life and joy and I want to, but sometimes I just want to be let alone and wail in the night and weep as I fold laundry in the hospital laundry room where you have to fear your clothes stolen if you don’t get there right when your load is done and your must use the provided little capsules of detergent.  You are not at liberty to use your own detergent.  I want to pound the bed at Ron Don that feels like sleeping on a precipice on the far edge and rolling down a hill into the center.  My very sleep blares how everything feels wrong.  Everything seems askew and out-of-place and I weary of it.  I weary.

Sunday was a strangely hard day despite my attempts to make it fun for Allistaire complete with a cute dress, easter eggs filled with candy and eggs hidden around the Unit for a wee hunt.  Oh she was happy with it and only longed for more eggs to find and the nurses rejoiced to see a child out of bed, walking around in clothes from another world, taking delight in an act millions of children have done throughout childhood.  But somehow I could not muster the joy I so wanted to have.  All I could feel was loss, was sorrow, was agitation.  I found myself being short with Allistaire, short with Sten.  I had leveled an emphatic “NO” to his idea to look into VRBO (Vacation Rental By Owner) as an option for our lodging for our upcoming trip at the end of the month.  Without realizing it, I hastily rejected an idea that screamed insecure to me, far preferring the normalcy and seeming trustworthiness of a reservation at a hotel where I could read through nearly a thousand reviews if I chose.

It took time and apologies and challenging slogging conversation to realize that a culmination of individual saddnesses were all piling one on top of another, threatening like an avalanche to sweep me off my feet.  I had the distinct feeling of rage at Allistaire’s leads that insist on alarming on the monitor at her every movement.  I severely lacked patience when it came to another meal time, another two plus hour stint in which I ceaselessly admonished her to take a sip of her juice and put a bite in her mouth.  When I finally pulled back, I saw my heart swapped with sadness to be in the hospital for yet another holiday, another Easter where eggs lay at nurses stations and nestled in curves of brightly colored tape to label IV pumps rather than with family around a meal and out in the grass searching for those eggs.  My heart already sagged with the knowledge that in a mere day, Sten would be gone again, not to return again for another month.  Separated again.  Alone in the fray again.  Eighty days in the PICU, nearly ninety in the hospital, with no end in sight, no guarantee of outcome.

Out of the corner of my eye, as we turned to the right from her room rather than our usual left, I saw the room down the hall flooded with lights, countless bodies in teal scrubs and masks.  We were instructed to cut short our normal loop, forgoing the last segment, first because they were putting in a line, then more activity, then a code.  Even at five in the morning when I left to exercise, the room was a blaze with light.  And then, later in the day, between walks, the room had simply gone dormant.  I recalled that the curtains had finally been drawn and then it was just empty.  Empty.  No more the lone figure on the outskirts with the orange Caregiver badge.  Empty.  I asked the nurse who I knew could not answer my question, was not allowed to tell me the truth, I asked her if that child died.  She looked at me slow and asked, “Are they still there?”  No. No.  The room is empty.  And I am just to keep walking, walking my child around this endless loop while rooms fill and empty, fill and empty and we, we languish ever walking loops.  And we are to rejoice, because we walk, we walk.

The caustic fear has diluted after countless storms and rain that washes and washes, the fear ever present but saturated in endless details and hours and days and nights.  As I walked into the hospital that Sunday evening, light staying longer, bright fierce green of new leaf a delicate airy shawl around trunks and branches, I thought, “the worst that can happen is that she dies.”  A thought so stark and naked and unadorned and assaulting and simple and brutal and calming.  A call on my phone from the nurse that Dr. Rosenberg, the attending oncologist, is looking for me, wants to talk to me.  Yes, I’ll be right up, I’m on my way in, I respond.  And suddenly it occurs to me that it can’t be good if she is calling, if she wants to see me.  We head to the quiet room where things anything but quiet are discussed.  She tells me Allistaire’s Uric Acid and Phosphorus are on the rise.  This is evidence of possible tumor lysis, of cancer cells breaking open and spilling their contents into the blood.  This is the unique mark of leukemia cells to be specific.  She has ordered a Flow Cytometry test done on Allistaire’s peripheral blood to look for cancer cells.  It won’t be definitive, not nearly as telling as bone marrow test would be, but all we can do at this point.

We talk of death.  We talk of hospice, a word so forbidden, so taboo, you fear even uttering it as though doing so will bring it into a living reality, a throbbing, visceral death.  I cry out that I do not know how to let her die.  But strange peace has seeped in, silent, filling the crevices, comforting and rocking my heart, telling me that I do not need to know, for no one does.  No one who faces this loss of child knows how to face it.  Peace tells me that my feet must simply walk and hands move, heart beats and I eyes open and close.  My body must live out whatever days and hours may come.  My heart will follow along, pulled by the body, inseparable but living out its own actions, its own bleeding, its own screaming and silence and smiles seemingly misplaced but never truer.  And I knew too, the Lord will lead my heart.  He will hold it tender even as it bruises and threatens to lose all its life blood.  Peace seeped in, like light imperceptible which ever so slowly turns darkness to day.  The slightest, barest hint of light, the sort of light you look at straight on and cannot see, light not seen by eyes, but by that essence of ourselves, that part of ourselves that knows without our knowing how.  She told me that parents who talk to their dying child about the reality of their dying rarely regret doing so.  And as her words filled the air from her numerous experiences with patients dying, I saw my one child’s face, the one with whom I have had far more occasions to talk of death with and of the life to come, the hope for a new body that can never again die – more occasions than most children will ever have with their parents forced to face the fleeting beauty of our lives.

It was actually Monday evening that I talked with Dr. Rosenberg.  For on Sunday evening I was panicked with fear, no, with terror.  Terror.  With Allistaire’s rising BNP, and the next day’s impending echocardiogram, my flesh was on high alert, ringing fear of realities the next day would hold.  I have bit by bit come to see in prayer that I need not shield myself from God.  I need not cloak my nakedness, my ugly, unlovely flaws, my tender, vulnerable, finite flesh, so desperately weak.  I am learning to not simply say that I need Him but to confess the details of my fears, my fatigue, my sorrow, my anger, my confusion, my desperate hopes.  I confess not as though sin, but of speaking out truth, of yielding the details into His care.  As the clock declared it morning on yet another Monday, I left the hospital in darkness to go exercise, robins sang, calling out one to another over and over, knowing somehow that the earth was still revolving, turning inexplicably ever again toward light despite none being visible.  Like the robins, whose calls declare such expectant hope like no other sound I know, I found tender, thriving sprouts of peace rising up, invisible but present, pressing their form into my heart without force and yet causing my heart to yield, to give way.  It was not hope that all would turn out well with Allistaire, but rather peace, peace in the face of whatever outcome.

When Dr. Hong finally arrived to convey the results of the echo, heat threaded up my back and neck and a lump formed in my throat as she told me her heart was worse, her ejection fraction down to 23 (from 35 two weeks before).  As I suspected, that forward steady march toward healing was not to be.  Her labs had been trending in the wrong direction despite her continuing to look great clinically.  She still had energy and appetite and her profusion seemed ample.  She said that she would not adjust Allistaire’s Milrinone yet but keep it at .1 until she could discuss things with the rest of the Heart Failure team.  I went to Magnuson Park to sit in the sun surrounded by fresh air and light and blue water

IMG_1354 IMG_1349Solveig & Jens 1 Solveig & Jens 2 Solveig & Jens 3 IMG_1066