Monthly Archives: January 2015

Jan29

This and…

Posted on by
Standard

IMG_1713There was a time when I would pull the bright orange lanyard over my head with some sort of ferocity, some sort of determination.  In white letters it says, “Parent/Caregiver.”  I walked the halls by morning and day.  In evening and night the orange encircled my neck.  A color impossible to disregard.  A color that declared, “In this place I dwell and in this place I fight.  When you look at me, know there is a face of a small child behind a door you will likely never see.  But she is there.  And I am here and I will not let you forget that she is real.  When you see my fatigue, know there is a child battling for her life.  When you see my joy, know there is a child whose life is being saved in this building.  When you see the puffiness of eye lids, a face strained from tears that both never cease to fall and never cease to be sufficient, know that a child’s life teeters on the edge and pleads for more – more days to run outside with wind on the face.  This orange pleads for more – more options when it seems there are none left and more weapons with which to fight that don’t also come at the cost of intelligence, of growth, of a heart that will allow her to run, to run.

In more recent times I refuse to wear the orange lanyard.  I comply.  Its circle swings from my arm.  Most often it clashes with my outfit, the one selected for its pleasing combination of colors, of texture and pattern.  That orange just slices right through it, distracting, demanding attention.  Rebellion.  Small, almost unrecognizable, but I know, I know that I am a “Caregiver,” but this is not all that defines me.  I rebel and declare that I have an existence outside of this place.  This orange does define me but it takes all the focus and lest you forget, I am more than a woman hidden away in this place.

We were finally settled into our new room in the Forest PICU, the one with the familiar bed and happy little raccoon stenciled on the glass.  The green of new flower bud in the hallway cheers and bursts, life, life, life!  I asked the nurse if she knew what time rounds would be in the morning so I could decide when to set my alarm in order to be ready to stand in the circle with the team that each morning joins together to consider Allistaire.  “You could just sleep until rounds and shower after,” she replies.  “I don’t do that,” I say in short staccato.  She comes back with, “You don’t have to look glamorous.”  Glamor?  Hah!  It’s not about glamor.  It’s about rebellion.  It’s about defiance.  It’s staking a claim and declaring that we exist outside of disease.  It is a shout that though you may see a bald child with tubes hanging all off her in a disarray, though you may see BNPs, CRPs, SVO2s, BUNs, phosphorus and calcium levels, creatinine, AST and ALT, WBC and abdominal girth, hematocrit and platelets counts – they are not the sum of her!  When I stand, clothed for the day, in that circle of doctors and nurses, I stand for her.  I stand ready to fight another day.

In the darkened room of nap time, I sit on the side of her bed rubbing her back as she moans.  Asleep but eyes squinting in pain.  I run my fingers up the length of her unfathomably soft back, up the nape of her neck where a wee nest of fine blonde hairs have defended their territory, up, up over the perfect curvature of her cranium.  A familiar routine, but I am startled as I look at her face.  She is a girl.  I take in her features and the adorable curve of her nose, the little light freckles newly scattered across the top of her cheek and realize, she is a girl.  I can see it suddenly.  She is no longer baby or toddler, but girl.  So long she has been bald, and even now, though she is forced to wear diapers, I see her long legs stretching out across the bed.  I see it in her face.  She is a girl in the world.  Earlier she cried out, “It’s not fair, it’s not fair.”  She cried because she so desperately wants to eat, wants to drink.  For the last thirteen days she has been forbid this essential human act.  I don’t know where she got this language, “fair.”  It is not a word I use because nothing about life is fair, not the good, not the bad.  There is no earning the bountiful good I have generously been given.  There is no earning this sorrow.  But I saw, her not as sick child in a bed, not as that baby girl that I gave birth to, not this wee girl I have cared for so long in the hospital, but a girl, her own self.

I stroked her back.  It is not only my child whose life is at stake.  It is not just the dreams I have for that baby I carried in my womb.  She is her own spark.  Her life so overlapped with mine has its own perimeter.  She is her own girl and I suddenly longed so sharply for her own self to have opportunity to force its way up into the world like that young tender stalk of flower pressing up through the dark soil, bud curved and unfurling, shining it’s own color out into the light.  I stroked her back and took in the adorable curve of her nose and was startled to imagine the sight of a woman there, a woman much older, decades older, dying again of cancer, of heart failure, of kidney disease.  And sudden grief overwhelmed as it came so clear that though she may live, this brutality of treatment may come snarling at her heels, threatening to ensnare such vibrant life, snap at her throat or silently constrict.  Her echocardiogram on Tuesday was worse than before.  Her ejection fraction dropped to 23 (previously 65 down to 29) and her shortening fraction dropped to 13 (previously 32 down to 18).  I shudder at the thought of an older version of myself stroking my daughter’s forehead as she once again fights so hard for life.

Yesterday, the foreboding CT finally came.  Over the course of more than an hour, Allistaire took tiny sips of apple juice mixed with contrast in anticipation of the scan.  When at last the contrast was in, the required hour had passed and the careful preparation to transport her to CT was nearly complete, Lauren, our nurse informs that we are just waiting a bit longer because the team wants to add on a few things.  Add on what?  “They want to look at her sinuses and brain.”  My mind goes immediately to black mildew of showers, to pink mold growing in the gray curves and undulations of her brain.  Fungus in the brain?  Oh good grief!  Another terror to top onto a great pile of terrors.  And in the lull of quiet after returning from CT and getting her all settled in, I tried to pray, knowing results would not take too long.

In little bursts I began to pray.  My words stepped out this way and that but each time retracted.  What do I pray?  What can I possibly say to the Lord that hasn’t been said already a hundred thousand times?  Of course He knows I long to have Allistaire be well and all the results be good.  He knows that.  I don’t even need to speak the words for Him to know my longing for her.  But I cannot ask for anything less than good, I cannot ask for there to be fungus lurking in the crevasses of her flesh.  Fungus is hard to treat.  Fungus takes a long time to treat.  Fungus can actually be the death of you.  My whole being strains forward in anticipation of the day when all this is behind us, when we have not only come to transplant but when we can look at it stretching out behind us like far off mountains, and we turn with eager joy as we speed East on I90.  While we remain trapped in this endless cycle of fighting cancer, my heart soars beyond it, out to the meadow in front of our house where crickets sing in evening and sage swells in the coolness, where grasses of innumerable sorts, grasses of blue and pink, brown, green and black undulate in waves of wind.  Like Dorothy, I long to return home, to the simple perfect joy of making dinner and looking out the window occasionally, seeing Solveig and Allistaire making their fort in the bushes along the driveway.

I willfully shift my gaze from that scene, I fix my eyes on Christ.  How many times have I handed her over to Him?  How many times have I asked Him to help me yield to His vision.  What can I pray?  She is yours Lord.  All her days are yours and I must even let go of telling Him how it is okay for her to die.  Somehow I have unconsciously decided that if she must die, let it be when all else has failed, let it be when she has exhausted every opportunity to fight.  To die of fungus?  To die when the road to transplant is laid open before us? No! NO!  Such indignity to die of fungus, to die of a heart that just finally fizzles out.  But who am I to say?  This fight against cancer demands all the attention, but really, cancer is not the point.  Sickness and disease is not what this is about.

I reorient my heart to Him.  I yield and allow the tug on my heart to pull me in, to draw near to Him.  To look Him in the eye and say, Yes.  Whatever you will Lord, whatever You will because your view of this landscape is not just of mountains, sorrow looming on the horizon behind and before.  You see the mountains, every crag and riven rock.  You were there when the plates of the earth contorted and bent in waves of rock.  You see the mountain goat windswept.  You see the blue-gray ferocity of storm and bright liquid yellow breaking through.  You are acquainted thoroughly with wee bug on leaf blade, of bacteria eating away the decay of leaves producing beautifully complex antibiotics to secure their survival against competitors.  You Lord are not bound by time, by place, by great expanses of space or the infinitesimally small distances between nucleic acids woven together in double helix.  You are the God whose eyes pierce my heart and discern every nuance.  You are the God who has come down low and looks each of us in the eye, with compassion and love swelling.

This is not about whether or not there is fungus in her brain that brings death.  This is not about Typhlitis or leukemia.  This is not about whether she lives to her 5th birthday, 35th or 80th.  This whole thing, every last detail is all about a beautiful God to wrestle with, to call upon, to yield to and know true abundant, eternal life.  This life, right here, this life is, according to Him, a vapor, a passing mist.  The mystery though, the elegant paradox, is not that this temporal life doesn’t matter or is insignificant, rather it is through this passing life that we may come to possess, through Christ, life that never fades, never fails, never diminishes.  We are blessed in this passing life to both come to know the Living God who matters ultimately and to know that these troubles will pass away, they will not forever bind us.  What mysterious gift to be able to deeply and vastly treasure this present life and to simultaneously hope for eternal life where every tear is wiped away, where sin and death have been forever conquered and where we will delight to see our Lord no longer through veil.  What freedom to hold what is precious with open palm.

This is the paradox I hold each time I come to the Lord in prayer.  Oh how I love and treasure the life of my child and the delight I gain in knowing her.  I want my sweet young girl to have the chance to experience this life.  So of course He knows I long for her to be healed.  And honestly, that is an easy prayer.  Effortlessly, I ask for good test results, for long life for Allistaire.  Wrestling fills the bulk of my prayers.  Lord, help me to love others enough to endure suffering for their good.  I cringe at the thought of likening myself to Christ for I fail so overwhelmedly, but He has set it in my heart to see that as I lay down my life in submission to His will, He uses the tears of my sorrows to raise up life.  For it is so intensely in these crushing crucibles of suffering that His face and voice have become most clear.  It is in these small cramped spaces of isolation and constriction and loss that I actually gain Him.  His words, which I have long believed, have become known, affirmed and beloved in ways I had never known prior to these last four years.  I have come to possess the Living God as He has drawn me in to greater dependence on Him.  He is my treasure.  How wild that I should gain the Ancient of Days?!  Who am I to have been given entrance to His heart, to His pounding, faithful love?  But it is precisely here, right here, in all the black moments and seasons that I have most seen His light.  Who am I to say No to that?  How can I say I don’t want to see Him?  How small would my love be for my dear fellow creatures if I did not yearn for each to know such deep, pervasive, uncollapsable joy?

Lord you know my heart.  Your will be done.  More and more I am able to yield.  Brain fungus?  I want to shout and stomp a furious, “NO!”  But I am the small one, the one with limited sight.  Be Thou my vision, oh Lord of my heart.

As it turns out, the resident comes in gleaming.  It’s all good.  No brain fungus.  No fungus or scary unexpected infections anywhere and a gut that is clearly on the mend.  And I praise the Lord.  Thank you Father.  Thank you for this good gift.  Wahoooo!  Rejoice, rejoice, rejoice!  As I nearly ran into the hospital this morning after going over to Ron Don to pack my clothes for the next several days, I heard singing!  Birds, birds, singing, singing.  Oh wonder of spring that defies the cold, defies the dead of winter. There are cherry blossoms that as always, decide so seemingly early, they are done with the drear.  They shower the tree boughs with cheery pinks.  The rock daphnes perfume the air.  There are yellow crocuses bursting out of the ground in front of the Ronald McDonald House sign.  Strange pale green, cabbage-like leaves are unfurling.  We know in our gut that life ought prevail.  And so it does, sometimes in this present life and always, always in the life to come.IMG_1722 IMG_1726 IMG_1742 IMG_1771 IMG_1775 IMG_1784 IMG_1711

Jan26

ICU Delirium

Posted on by
Standard

IMG_2642Four out of four walls are windows.  Three sliding glass doors.  Sounds barrage within and without.  The teenager next door is coughing and playing video games.  It’s 3:30am.  The tiny baby on the other side alarms again and again.  Nurses at their computers just outside, chat and laugh.  Who decided the little key code lock for the med cabinet needed to produce a sound with each button pressed?  The Purell dispenser…is that an abbreviated sound of a chain saw or weed whacker?  Pumps alarm.  Releasing the blood pressure cuff from the arm scratches the air; ragged.  Paper and plastic crackle the night.  Swish of the isolation gown with every movement.  New med, program the pump.  The beeping of buttons baffles.  Why?  Why must every thing beep?!!!  Auditory assault.  Breathes come sixty, seventy times a minute and with each the rhythmic moan or is it a whine, perhaps a grunt?

Her arms swing out wide, straight up into the air and eyes flash unseeing.  “I thought a glass bowl was falling,” she exclaims and her eyes shut again almost immediately.  Back to the grunt whine moan.  I push off the blanket and then pull it this way.  I roll to face the wall, seeking refuge from the incessant sounds.  But I know, I know if I sleep on this shoulder I will wake with a headache.  Too hot I think.  Turn down the thermostat and reinstall the earplugs and eye mask.  There’s something unnatural about sleeping in the presence of someone bustling about, mere feet from their activity while you strive to enter that state of finally letting go of the details of the present.  I lay there and my mind goes straight like little magnets to those endless numbers.  What is her CRP (measure of inflammation)?  Her BNP (measure of heart distress) went down from 2350 to 1200 something to 950 ish.  When are labs?  What time is it?  A normal BNP would be 0-90.  Labs are back and her’s has bumped up to 1700.  Alarms blare and I whip on my glasses and study the monitor.  Oxygen saturation is 88 now 87, 86.  Is the pulsox on correctly?  Try a different toe, a finger maybe?  And I look up at the top green number flashing in the 170s.  How is her heart ever going to heal if it will never slow, never ease?  What will the Heart Failure team say about that BNP that’s dropped?  I despise that name, Heart Failure.  Can’t they think of a more positive name for their team?  Stuff the earplugs down tight and slowly, eventually enter that place where consciousness drops away and maybe the numbers can’t sneak in through the cracks.

Her breathing picks up and she calls out panicked, “I’m gonna throw up!”  With speed and attempted gentleness I thrust her back upright, hand pressed against her back hot and soft.  I pull her into the crook of my arm, holding the throw-up basin with one hand and the other wraps around to the left stroking her arm.  My face rests atop the heat of her cranium spiky and soft from one lone hair left here and there.  All my cells cry out for sleep and I tell them to hush as she gags and strains.  Over and over I rise to comfort her and cycle back round seeking reprieve in sleep for myself.  Three broken hours of sleep and my alarm declares morn at 6:30 which happens to coincide with the unexpected swoosh of three gown clad surgeons here to assess their wee patient.

I am flustered at how flustered I was with the night.  But it’s like the movie “Groundhogs Day,” where you simply relive the same day over and over, some endless cycle you cannot seem to escape.  I feel a bit crazed.  In rounds all her “systems” are discussed and once again the suggestion of doing another CT comes up and I resist.  My mind has had hours and hours to review her episodes of pain, look for the details, clustering and dissecting.  I hover over these now 10 days in the ICU, contemplating, considering each angle.  Here’s what I got – Days 1 – 3 her pain fairly steadily decreased.  However, with the first dose of granulocytes, her pain once again ramped up with episodes of intense pain that required boluses of pain meds to even bring moderate relief.  The fevers began, sometimes a whole day at a time with unbroken fever despite Tylenol. Other days the fevers were intermittent.  In the past few days, while the fevers have continued, the boughts of intense pain have reduced in frequency.  More often now, if she has an episode of intense pain it yields gas, throw up or most often, stool.   From my vantage point, she is no longer having generalized episodes of intense pain but rather a simmering incessant discomfort and agitation.  She never seems to really sleep.  She startles and whimpers constantly in her sleep and breathes rapid, shallow breaths.  The idea of needing a CT is once again tabled, at least for today.  For the first time I hear the term ICU delirium, but the conversation rushes on before I get a hold of this word and whether it was meant in jest or truth.

“I’m scared.  I’m scared,” she cries frantic with heaving sharp breathes and trembling head.  “I’m afraid my face is going to fall off the ceiling.  I’m afraid to look up.  I’m afraid my face is going to fall off the ceiling.”

Uh, what?  What in the world does that mean?  She gets herself SO worked up.  She hears the resident say  she’s going to order a chest X-ray and she begins amping up her terror.  The sight of the portable X-ray outside the door only intensifies her fears and agitation.  When the X-ray plate is slid behind her back she screams, literally screams with mouth wide, Owie, Owie, Owie!!!  She is becoming more and more irrational.  Before the nurse even flushes her IV she assumes it will hurt and pulls back.

So I don’t really understand the first thing about it, oh wait, no I do.  I do understand the first thing about ICU Delirium.  I’ve started to experience it myself and I’m not even the one in pain and sick.  Allistaire has hardly had a solid hour of good peaceful sleep in the last 10 days.  The number of intrusions on her body is literally incalculable.  Apparently this phenomenon is legitimate where the brain, so deprived of sleep and so disoriented by medications and interruptions literally loses its hold on reality.  I have seriously no idea what she means that her face might fall of the ceiling.  But the poor girl is coming undone.

We are all trying to assess what is real and true for Allistaire and how to meet her needs most effectively. And by “we,” I mean her nurse, the ICU attending, the fellow, the resident, the Infectious Disease Team, the Heart Failure Team, the Hematology/Oncology Team, the surgeons, the pharmacist, the nutritionist and of course myself.  Throw in the mix the sweet music therapist, Betsy, the art therapist, Rosalee, and the occupational and physical therapist – all of whom, literally all of whom, have seen her today and do most days.  Every single day her meds are assessed as are her fluids in and out and her pain.  Every single day her blood counts, electrolytes, cardiac function, liver function and kidney function are examined.  Her blood pressure, temperature, respiration and saturation are tested, endlessly it feels, over the course of each day and night.  A fever brings need for temperature checks every 15 minutes.  Conversation after conversation re-addresses each topic with fine tooth comb, looking for clues, for missed signs, for hope and for doom.

I am exhausted and maybe more so, just weary of it.  More so is she.  So what are we to do?  We’ve requested we be moved to the 6th Floor PICU in Forest where the rooms are identical to our room one floor up on the cancer unit.  These rooms offer such amenities as 2 solid walls, one window to the outside and a sliding glass door that actually closes all the way.  There is a curtain that more effectively blocks out the saturating light of the hallway and a second curtain that provides a small bit of privacy for the parent. Another handy joy is a bathroom you can use in your own room, rather than the current scenario of having to put on your shoes walk through two sets of doors and then around the hall and a request to be let back in.  So not only would a room on the Forest PICU offer more quiet and dark, but it would be familiar, it would look just like home.  And maybe these little details would help my little love return to reality and herself a bit.

In an effort to ease the burden on her heart, her fluid balance is reassessed numerous times a day in an attempt to determine if she needs more Lasix to pull off fluid.  So while Allistaire is a bit crazed, in some pain and breathing a little inefficiently, the major issue that’s risen to the top is the condition of her heart.  While it is still not ultimately clear if the fevers and pain can be decisively linked to the actions of the granulocytes, it seems likely that her typhlitis is on the mend and will really have the best chance to do so once her marrow starts to produce its own white blood cells.  Today is day eleven since her ANC hit zero.  In the last round of chemo, it took fourteen days at zero before her marrow started to rebound and begin producing cells.  It may take longer this time since her marrow had already been knocked down hard so recently.  On the other hand, the GCSF shots which she gets each evening, may speed up her blood count recovery.  Regardless, while the granulocyte transfusions are likely helping her heal, the real progress will be seen once her marrow recovers.

As far as I understand, the condition of her heart is being assessed clinically, and by the echocardiogram and her BNP (Brain Natriuretic Peptide).  To assess her heart clinically, the team listens to her heart with the stethoscope, feels pulses and assesses profusion by feeling if her hands and feet are warm and if they have good capillary refill.  Her echocardiogram provides the cardiologists with a lot of information like whether or not the heart is dilated and what the ejection and shortening fractions are.  After her last round of chemo, her heart looked awesome with an ejection fraction of 65 and a shortening fraction of 32.  Her last two echocardiograms which she’s had during this ICU stay, have both showed a substantial drop in heart function with her ejection fraction down to 28 and her shortening fraction at 18.  Not only was she put back on the Milrinone, but the dose was doubled.  Apparently, Milrinone is an excellent heart med but one that can only be given in the setting of the ICU.  It is likely that the cardiologists will want another echocardiogram sometime in the next several days which would help them to decide what to do with the dosing of the Milrinone.  The timing of this will probably be informed by how her BNP is trending.  Normal is 0-90 and at first testing four days ago, hers was 2350.  It then dropped quite nicely for three days but is now back up.  We will see what the next few days bring.  Of course our great hope is that this is an acute process that just needs more time to resolve, but resolve it will.

I had intended to give this update on transplant after a great phone call on Friday the 16th, but this whole ICU business sort of took the spotlight.  Back when all my attention was focused on those doors preceding transplant, a few conversations here and there brought wonderful news.  Dr. Bleakley, the transplant doctor at Fred Hutch who is heading up the clinical trial we so hope for Allistaire to be on, has gained the consent approval of the German version of the FDA along with the go ahead from the FDA itself.  Apparently, if you don’t hear anything from the FDA in the 30 days from your request, you are free to proceed.  Two great doors have swung open.

The other issue with the transplant was the question of whether or not the cells would be viable once they arrived in Seattle to undergo the naive T-cell depletion which is what makes this transplant unique from the standard protocol.  Knowing that it was possible the cells would not last long enough to undergo this manipulation, it was possible that the cells might simply be transfused as is done in a standard transplant.  The standard transplant and clinical trial transplant have different conditioning chemos.  The standard transplant uses Cytoxin and the trial uses Fludarabine.  Fludarabine is the first chemo that Allistaire had with her first relapse.  The Fludarabine didn’t even touch her leukemia.  So my fear was that if we chose to go forward with the clinical trial transplant and the cells were unable to undergo the manipulating, we would have essence chosen a transplant with Fludarabine over Cytoxin, knowing Fludarabine hasn’t destroyed her leukemia in the past.  I was relieved to hear that the purpose of the conditioning chemo is not for its anti-leukemic effect, but to suppress the host (Allistaire) immune system enough to make way for the donor cells.  Turns out Cytoxin isn’t especially anti-leukemic for AML either and is again simply being used to suppress her immune system so that it doesn’t attack and destroy the donor cells before they can get established in her body.  This means that while the chemos differ for conditioning, their purpose and effectiveness are on parr.  Additionally, Dr. Bleakley is now taking a more positive stance on the idea that the cells will be in good enough condition to undergo the naive T-cell depletion.  Her optimism is likely impacted by now knowing who exactly her donor is and thus where exactly they are coming from.  A donor from a “major center,” like Frankfurt would allow for a quicker turn around time than a donor from some small town or country outside of a major transportation hub.

So who is Allistaire’s donor?  Oh how my heart leapt with joy when I heard that there is a 28-year-old woman who is O positive and CMV positive that has committed to the requested time frame for transplant.  She’s real!  It’s so hard to fathom, to really get a hold of, but she’s out there and she’s Allistaire’s hope for a source of blood cells devoid of disease and replete with life.  Day +28 of this round of chemo is February 5th and she is currently scheduled to be transferred to the BMT (Bone Marrow Transplant) service on February 17th.  Assuming the standard 2 week testing period, conditioning would start on about March 3rd with about four days of radiation followed by 2-3 days of chemo.  The actual transplant would therefore occur about March 10th.  Of course this is all dependent on her ability to recover from this acute assault on her heart and gut and be in a position to move forward with transplant.  My eye is ever on every last detail of the present and simultaneously it is fixed on that ultimate goal of transplant.  Perhaps this adds to why I feel slightly crazed myself, the stakes are high, as high as they can get really.

The last update on transplant is that apparently the awesome law passed in Montana almost exactly two years ago which was supposed to bar insurance companies from denying cancer patients clinical trials, is according to the financial counselor, “swiss cheese.”  The insurance companies have found the loop holes and do what they can to avoid having to incur costs.  Kira, the SCCA (Seattle Cancer Care Alliance) insurance coordinator tells me that while the insurance companies have their way to get around things, so do the SCCA lawyers.  Nevertheless, Kira, our financial counselor Carrie and our social worker Ashlei are all working any angle they can to ensure that Allistaire’s transplant gets paid for.  Currently we are applying for some sort of spend down Montana Medicaid program and Montana Social Security for Allistaire.  I will spare the details but the final word from Carrie is that if all else fails, Seattle Children’s Hospital will pay for Allistaire’s transplant through their foundation.  I could not help but cry when she told me that.  How utterly incredible that ultimately we need not stress over how this transplant will be paid for.  Of course it is my hope that insurance or Medicaid will cover the cost but it is such a relief to know that one way or another, cost will not be a blockade.

So, so many details.  So many facets of an ever-changing picture to constantly be reassessing.  Right now so much of what is before us is simply endurance, simply being patient with the need for time to accumulate.  We live ever in a state of delayed gratification, ever pressing on because at the core, we believe it will be worth it.  On the other side of this is something worth enduring for, really, worth suffering for.  This seems to be one of the major themes God continues to impress upon my heart – endure for the joy set before you.  Endure.  Joy is coming.  JOY IS COMING!  Endure.

And there is my sweet Christ, my compassionate, merciful high priest, yielding before the God of the universe, taking Him at His word.  Christ endured the cross for the joy set before Him.  I seek to endure these days because I am looking ahead.  I fix my eyes on Christ, the author and perfecter of my faith.  And all the while, I know that He sees me and He is carrying me, even through ICU Delirium.

Jan22

Worse before Better

Posted on by
Standard

IMG_2628_2“I just feel like I could cry,” the nurse said dejectedly with arms slumped at her sides.  I totally knew what she meant.  All day I felt the strain of tears pressing against the back of my eyes, hot and insistent.  With one hand I held the X-ray plate, the other pressed up against her leg, the lead apron demanding the depression of my body.  Allistaire shook with pain and the multitudes of lines and agitating chunks of plastic surrounded her.  “I can’t do it,” she cried over and over.  “But you must, you must.”  A great sigh escaped my lips as the X-ray tech went to check if the picture was sufficient.  I hadn’t even known I had mistakenly allowed my weariness to see light until he said, “Almost done mom, just one more.”

I push back, flattening the words of the podcast on how X-rays work.  Attend to the task at hand.  Disregard the weight of the lead.  Ignore the little lead heart-shaped shield they put over her ovaries for the chest X-ray and then remove for the 2 abdominal X-rays, every single day.  Forget that a CT is worth 250 X-rays.  You did not hear the suggestion to ask your dentist if that X-ray is really necessary.  Grip your child and ignore her protests, the beads of sweat on her brow and her labored breath because the pain won’t let up.  Now quick, onto the other tortures, lift her up this way and that, change the sheet and pull the measuring tape under her back to measure the distention.  Press her hands and toes looking for capillary refill.  She is exhausted.  So unremitting is the pain that she hardly sleeps and the turmoil in her gut breaks through multiple times an hour.  The pain meds are increased, boluses accumulating and new meds added.

It feels like we’re going backwards, like the past three days have never happened.  Her chest rises and falls rapidly, heaving.  Back on goes the Milrinone.  Up go the pain meds.  Increase the flow of the cannula.  Ease the burden on that left ventricle of her little heart, beating so hard with terror and with fight.  After two days of granulocytes, the neutrophils display their fury against the invader.  Their number has increased from zero to almost five thousand on Wednesday and after the second dose they are over seven thousand.  Who can understand their mysterious wisdom, how they know where to rush in haste to battle, to mend, but it shows in the incredible increase in pain and all night she has been feverish despite regular doses of Tylenol.  I guess this is the worse before the better.  It’s hard to watch and strange to be forced into the paradox of cheering and gratitude when everyone around wants to throw up their hands – what more can we do for her pain?  How high can we go with this dose?  What will calm her anxious fears?  We’re not even living it, just bystanders, constantly racking our brains to come up with what combination of meds in what doses and at what times will finally yield some peace for her.

Fourteen hours in my too-tight pants and socks that agitate the ever dry skin of my legs.  So irresistible is the scratching that streaks of blood line my ankles and calves.  I listen to the message on the phone in Ron Don about some package that has been there for days, waiting for me to pick it up, to respond to its little incessant presence.  But it is too late and in the morning I will rush again to the hospital to relieve Sten from his long night so that he can go nap for several hours.  I unbutton my pants that have pressed into my gut, unrelenting all day.  Another pair down?  Is that 3 or 4 pairs now that are too tight?  Another bit of myself goes skittering away.  No chance to exercise and some strange, frustrating need to eat.  How can I want to eat when all this is happening and all I do is sit in a room hour after hour for days?  I resist long but at last succumb to the warm comfort of the coffee cupped between my palms.  The hot liquid soothes as it goes down my throat, like a hand brushing slow across the forehead.  My hope is in this caffeine that perhaps somehow it can push back against that wall of fatigue that even recent good nights of sleep seem incapable of diminishing.

“I was wondering if it might be possible to make an exception and have James be allowed to show me how to pump up my bike tire?”  Before the ICU slammed out all other life, I had been attempting small steps to be more prepared for Obliteride.  Last years ride was fun enough to make me want to do it again, but so brutal that I knew I would be fool to not be better prepared.  My sweet mother-in-law generously has allowed me to borrow her bike, a fantastic bike made more so by its perfect orange frame.  What a strange color, orange. So bright, almost cheery, but with some sort of fiery force and determination.  It is a color to be reckoned with.  And out of the corner of my eye I would see it sitting there, locked safely in the corner of the bike racks.  I bought bike shoes I’ve been too afraid to use.  Little goals – take a picture of the pedals to buy the cleats that fit.  Check.  Get on the bike, oh but wait, I can see how to go one direction with the gears but not the other.  Thank goodness for google that yields the answer.  Tentatively, I ride, but not before I have walked my bike across the intersection.  I get to the Burke Gilman trail and feel slightly more at ease but anticipate the other cyclists speeding by yelling, “on your left!” And I try to make myself as slim as possible and hug the far right edge to give room.

Sitting on my bed later, I laugh at how tender my tail bone is. How in the world did I ever, ever get on a bike and ride 55 miles without having ridden in a whole year?  What a fool.  What an idiot.  But wow, who was that person, what carried her all those miles?  How did she say no, no to the aid car?  Was it not the pain of her own little girl?  The pain she has endured?  What is my pain, ever, ever, compared to hers?  I wrestle with my own heart, weeping and yet berating, what is my pain when I have been given so much?  She is here with me.  Who am I to let the tears come when I always see the grey eyes here and the blue eyes and the green brown eyes of moms whose hands now lay empty on their laps?  I have bounty upon bounty.  I have been given so much time that might not have been.  Such an array of armament has been brought to bear against the invader.  I have been offered unfathomable privilege to walk so far down this road of war.  How many mothers across this globe at this very moment weep and weep with limp child, eyes glazed?  But there they sit, the abundance and the ragged gaping loss.

I got on my bike last summer because I had so much to be thankful for.  I got on my bike last summer because my heart had been run through with the blade countless times.  There was ecstatic joy and severing sorrow.  I make little goals and devise little plans to get back on that bike, to acquaint my rear with the weight of my frame.  I stop the man from getting his own bike and ask, will you help me with these shoes?  I don’t understand how they clip in?  And he gives kindness to me a stranger, and he offers knowledge and extends encouragement.  Another man delays his ride home to help me figure out how to pump up the tire with the special pin, unlike the girthy simplicity of a mountain bike.  But then I flatten the tire utterly, inept at my attempt and sit feeling myself deflated despite my best efforts.  Her comes Seth again, I recognize his shoes and beard.  Again I entreat him to help me and he graciously pumps up my tire and instructs.  “What you need is the foot pump they have up in the bike cage, it would work so much better.” “Yes, but that is for employees only, ” I respond.

“Can you make an exception and allow James to help me learn how to pump up my tire?” I ask Jen in the Department of Transportation.  My hope is that they’ll allow James to teach me some basics that will help prepare me and give me a little more confidence out on the bike.  “Sorry, it’s just for staff.  It’s a liability issue.”  Before I know it, I’m gulping down barely audible sobs. The tears stream and I apologize, saying I have no idea why I’m having this response to something so small.  Before I know it I’m telling her there are some people who live, like actually live, in this building and are trapped here for long periods of time. It’s incredibly hard to find a way to exercise and all I want is some help to be able to ride my bike.  My spirit slumped and suddenly swamping waves of sorrow weigh heavy, an unconscious overlap of sorrow upon sorrow.  Perhaps it had something to do with the combination of hearing about the dangers of X-rays when I had only the day before been doing a bit of research on TBI (Total Body Irradiation), being prompted by seeing Dr. Ermoin, her radiology oncologist.  “Did you know that the Fred Hutch website says that TBI “is equivalent to being close to the epicenter of a nuclear bomb blast”?  “It does not,” he says alarmed.  “Oh yes it does.”  Only weeks before I finished reading the book, “Unbroken,” and vivid descriptions of the nuclear bomb dropped on Hiroshima.

Hiroshima.  My child.  Allistaire standing there in the gray devastation, the silent ripping of radiation particles colliding with her flesh, tearing at the fiber of her being, DNA sliced into ribbons.

I am powerless to stop it.

I wear the lead apron to protect my own flesh while her’s must simply accept again and again and again the devastation.

The waistline of my pants cut in and again I shift, trying to find comfort.  All I want is some help with my bike pump.  I am cut off from my home, my husband, my family.  I’m asking for help.  I’m ever in the position of being in need, but I’m willing to reveal my neediness.  I’m trying here people.  I grasp for help in folks passing by, going to their bikes.  Will you help me?  This person helps with figuring out how the bike shoes clip in.  That man helps with how to inflate my tires.  The first man helps again when I stand frustrated before the flattened tire despite attempt after attempt to get it pumped up.

Cancer makes you feel powerless.  Cancer isolates.  It’s just a tiny cell but somehow it seems to dominate everything.  All the forces of man are brought to bear against it, yet how it seems to ever overcome every effort.  You accept the destruction.  You say yes to the horror because you have no other choice.  You embrace, you praise, you rejoice in the weapons, pressing the collateral damage back, back to the periphery.  And the shrapnel of cancer slashes anyone in its proximity.  There is the slice of jobs lost.   There the bleeding hole of your relationship with your other child.  Time, seasons, swings of dark and light, leaves dead and leaves budding, friends living their lives and you just gone, gone.   Those too tight pants bring rage, bring silent tears you reprimand yourself for having.

All I want is to take my flesh in hand and have it yield to me.  All I want is to get my tire pumped up so I can get away from this building for an hour and breathe cold air and see something other than walls.  All I want is to fit in my clothes and not want to tear them off of me at the end of another day.  All I want is to fight back.  All I want is to ride my bike so this August, I can enjoy Obliteride.  All I want is to feel the power of my quad pressing down the pedal, speeding me away from this constricted, suffocating fight and closer to a cure.

I must give thanks to the little Hiroshima that will transpire in the basement of the University of Washington Hospital within those lead lined walls and door.  I must give thanks to the poison that decimates my child’s immune system and has left her vulnerable to these ravaging bacteria.  I give thanks because these are the forces that have taken years to understand and develop.  I fall on my knees in gratitude for the hundred of thousands of hours of research scientists endeavoring to unravel the power of cancer.  I give thanks for three years of life for Allistaire that could have never been were it not for cancer research.

I mourn and I wail because of that most wretched Hiroshima unleashed on my child, that killer not only of cancer cells, but brain and bone and ovary and pituitary.  I fall on my knees in grief for the poison that distorts the DNA of her cells and heart and skin.

I grieve years lost and rejoice in years gained.  For they are one in the same.

Obliteride is a grieving and Obliteride is a rejoicing.  It is one in the same.

This August, I will once again have the joy and privilege to participate in Obliteride which is a bike ride to raise funds for Fred Hutchinson Cancer Research Center.  One hundred percent of funds raised go directly to cancer research.

I now know how to pump up my tire.  Soon I will know how to use my bike shoes.  My bum is already getting acclimated.  As I trudge up and down, up and down the eight flights of stairs in the Forrest stairwell morning after morning, as I ride down the trail, as I feel the burn of muscles being pushed to do more, to go further, I smile.  I will one day fit into my pants again.  More importantly, one day there will be no need for Hiroshimas or poison.  One day cancer research will have found the way to fully harness the immune system and stop cancer in its tracks, without the collateral damage.  Maybe one day we won’t need a cure, because we will have found how to prevent cancer.

I’m going to keep getting on my bike.  I’m going to get on my bike in anticipation of this summer’s Obliteride.  I am going to get on that bike every single year the Lord gives me life and there are muscles that can move.  For I have much to be thankful for.  I have much to grieve.

How about you?  Where has the shrapnel of cancer lacerated your life?  Where has cancer stolen from you and caused your heart to grieve?  Where has cancer unexpectedly given you so much rejoicing and thanks that you never knew before?

One of my favorite quotes is this:

“It is the greatest of all mistakes to do nothing when you can only do little.  Do what you can.”

If you would like to support me in raising money to fund cancer research click HERE

Help me OBLITERATE cancer!!!!

 

If you want to join our team for this summer’s Obliteride, we’d love it!  Emily, Jo and Lysen have once again committed to another year.  Leave a comment on the blog if you’d like to join our team and I will get right back to you.IMG_0481

Jan21

A throwback – just for fun

Posted on by
Standard

I’m sitting by Allistaire while she groans in pain from lots of abdominal pain that barely lets up.  I’m slowly going through my ridiculous inbox of my email, trying to sift through the pile and I came across this video of Allistaire almost 2 years ago, just after she relapsed the first time.  She was 3 years old and so painfully cute!

Allistaire’s Cupcake Video

Jan20

Cells & Poop

Posted on by
Standard

IMG_2599I’m pretty tired to be honest so we’re going with bullet point style tonight:

The goals for today were to wean what could be turned down and keep stable what was needed to provide stability going into the granulocyte transfusion (the goal is to get the neutrophils which are a subcategory of the broader white blood cell group: granulocytes)

This morning they turned off her milrinone; everything has remained stable

Her abdominal pressure seems to be going down a bit as well as her abdominal girth

In order to get in a more complete dose of her TPN, they increased her fluid limits slightly and she has tolerated it well with an appropriate increase in urine output.  This means her kidneys are keeping up beautifully

Her morphine has been reduced by half and she has done well with that

The big news of the day is that she began pooping which is really pretty great since it’s the first time in 5 days.  She’s had quite a bit of abdominal discomfort and cramping just prior to each time.  While it’s unenjoyable for her, we are encouraged that things are moving again

At long last, the neutrophils/granulocytes finally arrived about 7pm.  They gave her Benadryl ahead of time to ward off any transfusion reactions and are running them over four hours.  We’re over halfway in to the transfusion and there is no sign of a reaction which is great.  Once the neutrophils enter her system, they will travel to the locations they are needed and begin their work.  I honestly don’t know how long before one might see a response to their activity, but the docs are prepared to support her with whatever occurs.  I found out today that it is quite an immense undertaking for the donor to donate granulocytes and for this reason, they are only called upon to give those who are neutropenic (without neutrophils) and have a very serious illness.  Thank you to those brave and giving folks out there who are willing to so tangibly give of themselves for the wellbeing of a stranger.

It was overall a good day with a number of great steps forward.  She is still far from her normal, cheery self but her fluid load seems to be diminishing and she is slowly regaining some movement.  She sat upright for the first time in days (with assistance).

Tomorrow we hope to see more steps forward but realistically, she is doing phenomenally well and the staff is impressed with how great she is handling everything and are encouraged, we have much to be thankful for as things stand. IMG_2602 IMG_2603 IMG_2612 IMG_2620 IMG_2622 IMG_2626

Jan19

Progress

Posted on by
Standard

IMG_2591Notice anything different?

That’s right, Allistaire was extubated today!  During rounds this morning it came to light that the donor lined up today to donate the neutrophils was ineligible which meant there would be no transfusions today.  Our sweet PICU doctor, Tom Brogan, suggested that since she has been doing so well, that we should remove the breathing tube.  He said that while it is possible that she could get sicker once she had the transfusion of neutrophils, that more than likely she would do well.  He felt safe about giving her a chance without the breathing tube, knowing that if necessary, it can go back in.  So over a relatively short period of a few hours, a step down approach was taken to her ventilator, culminating in the removal of the breathing tube.  It was of course quite traumatic for her for a short bit, but she calmed down soon enough.  What really made her mad in fact was not the removal of the breathing tube so much as then having to have the nasal cannula placed for high-flow oxygen.  She is on the high flow mostly to help inflate her lungs, thus reducing the work of her lungs and in turn reducing the work for her heart.

It was the most wonderful sound in the world to hear her voice, soft and raspy though it was.  “She’s come back to us,” I rejoiced.  It really did feel like we got our girl back.  Since that time in mid afternoon she has been doing really well.  She isn’t up for much talking but has said a few things and said Hi to Solveig on the phone.  The other joy is that she has been able to keep her hands off of the tubes and was thus freed from her little blue quilted handcuffs.  She seems to be enjoying moving around more on her own as well. Since Saturday morning she has mostly sat in bed like a great bloated buddha in a semi-lotus position.  For the first time, she has moved over on her side on her own.  She is stretching out her legs, raising her arms over her head, gripping on to Doggie, Piggy and Kitty and of course, sucking her thumb.  She was actually awake enough to watch some cartoons for a few hours this evening on her iPad.  This is by far the longest she has been awake since we got here.  In fact, most of the time she only has had her eyes open for a few minutes at a time.  This is in part due to the fact that they have been able to turn down her morphine a bit since she no longer requires the same amount of sedation as she did with the breathing tube.  But after a few hours, she was definitely done.

While extubation was a major event, it really was a rather quiet day.  Sten got some work done down in Starbucks and my mom came over for a visit.  Behind the scenes the nurse and doctors have been really trying to strategize how to reduce her fluid load.  There are SO many fluids they are trying to get in her body.  The antibiotics alone end up accounting for a good deal of volume.  Additionally they are really trying to get in her TPN, though that is the fluid that has the lowest priority.  Her potassium was down and so she was put on a drip that they are trying to convert over to the TPN and they even concentrated her morphine.  It continues to be a delicate balance of meeting all the varying, sometimes competing needs.  Because her blood pressures were doing so well, they did give her a dose of Lasix which pulled of an impressive volume of urine.  Thankfully her kidneys continue to function well.  The nurses are also consistently attending to the NG tube and pulling out the fluid from her stomach which makes about a half a litre of fluid each day.  They also can pull out air that seems to have gotten in her tummy.

Overall the plan simply remains trying to keep her stable.  The only big change that I know of is getting the neutrophils tomorrow.  As was the case yesterday, Allistaire has asked for Sten a number of times when he was out of the room and she had become agitated.  They are just so sweet together.  I knew before I married Sten that he would be a great dad.  He is so tender and kind to her.  What a gift he is to us!

As you can see, our Solveig got her violin today.  She is so excited about learning to play.  We are blessed to have Sten’s family helping out so much with her at home and to have Grandma JoMarie’s help with music lessons.  We have bounty upon bounty.  A sweet woman I do not even know, other than her name, dropped off a mini feast for Sten and I to enjoy tonight, without even asking.  Thank you Libby 🙂  Thank you so much for all the abundance of prayers and just amazing compassion.  We take joy in our indebtedness to you all!

IMG_2585 IMG_2586 IMG_2589 IMG_2592 IMG_2597

Jan18

PICU Day 2

Posted on by
Standard

IMG_2564Allistaire was so stoked for the big Seahawk’s game today.  She was cheering for Russell Wilson the whole time.  Okay, so maybe not.  But Sten and I had fun watching the game in between the many steps taken to move Allistaire forward with support through this process.  It was a busy day but overall calmer and more relaxed as Allistaire seems to be in a really good place.

A Foley catheter to drain off urine was inserted this morning. This allows for urine volume to be tracked very precisely which in turn provides more exact calculations of fluid intake and outtake.  Additionally, a probe component of the catheter provides the internal abdominal pressure.  Another fine feature of the Foley, is a precise and constant internal temperature that displays on the screen along with all the other numbers being monitored.  They are also now taking girth measurements which also allows the doctors to track changes with her abdomen.  So far we are encouraged that her abdominal pressure is normal.  Her urine and stool are checked for blood, as is the contents of her stomach on occasion that is drawn out by the NG tube.  So far there has been no sign of blood, though she has not had any stool as of yet.

Because Allistaire’s blood pressures have stabilized, they have added Milrinone which helps to dilate the vessels thus reducing the pressure the heart is working against to pump.  It also helps the heart itself with pumping so that there is greater blood profusion to the tissues throughout the body.  This should help the heart not have to work so hard on its own and provide more blood to her gut where there is tissue at risk of cell death, as seen on the CT. If you look closely near the bottom (slightly left hand side) of the CT image, you’ll see a small white ring with a dark gap on the upper left side.  This white ring and the white line beyond it show the thickened wall of the bowel and the dark spot may indicate lack of blood flow and thus necrosis.

Today they increased her transfusion thresholds, platelets going from 10 up to 50 and red blood from 21 to 25.  They want her to be in a strong position, especially with any potential internal bleeding.  Her hematocrit had risen to 41 from about 27, not because her marrow is making new red blood cells but due to her dehydration yesterday.  The blood was more concentrated, resulting in a higher concentration of red blood per the volume of blood.  This means it is a little difficult to accurately determine her true hematocrit.  They will take into consideration both her hematocrit and her fluid needs in determining when to give red blood.  This morning she was given a transfusion of platelets and this evening, red blood.

She will be given a GCSF (Granulocyte Colony Stimulating Factor) shot to stimulate her marrow to produce blood cells.  Without this stimulation, she would typically have zero white blood cells for the next two weeks.  Given the severity of this infection, Dr. Gardner (who consulted with not only Dr. Tarlock and Dr. Ho, the two AML docs here, but also with our beloved Dr. Pollard) wants Allistaire to have these shots to speed up the recovery of her marrow.  For myself, I have quite a fear of the GCSF shot.  When Allistaire first relapsed back in February 2013, her first course of chemo involved GCSF with chemo.  This was the round that on Day +16, she had blasts for the first time.  Dr. Gardner understands my fear but believes the benefits outweigh the possible con.  Based on her last bone marrow, there are no detectable cancer cells so in accordance with the idea that she has no cancer, the GCSF shots cannot obviously produce cancer cells.  If they are there, well, they’re there and there’s nothing to do about it.  Having her recover from this infection is the absolute highest priority.  The shot will likely be given every day for the next few weeks, around 6pm.  Those with other forms of cancer that do not originate in the myeloid blood line, are often given GCSF shots to help them recover more quickly.  Tomorrow evening she will also begin daily infusions of donor neutrophils which will likely make her sicker before she really gets better.

This evening Allistaire began getting TPN (Total Parenteral Nutrition) and lipids.  TPN looks like a big bag of urine but quite awesomely contains all of her necessary nutrients.  The lipids (fats) look like the purest cream you can imagine.  These should begin this evening as well. Each day she will also have her chest and several views of her abdomen x-rayed.  Today her chest x-ray looked  more clear of the bit of fluid that had gathered in her lungs.  I haven’t heard that there was any significant change shown in her abdominal X-rays.

The hardest part for Sten and I are the times that she is desperate to communicate with us and tries to speak but no sound comes out (the breathing tube goes right between the vocal chords).  This afternoon she was asking and asking for something to drink.  It is uniquely awful to tell your child they cannot even have a sip of water and to know that it may be weeks before she can.  When she had to get an IV placed in her foot in order to provide enough lines for all of her meds, she silently screamed, “Take it out.”  When only a half an hour later, the nurse had to give her the GCSF shot, her eyes again shot wide with terror and she was intent on telling us something we never could interpret.  I sincerely hope she won’t remember this time.  Thankfully I think they have truly found a great spot of balancing adequate sedation with her morphine where she is not expressing pain overall and sleeps a lot but is also very interactive and can answer yes and no questions and can ask for things like her blanket to be pulled on or off of her.  In one of the close up pictures, I asked her to smile.  It is barely visible in the picture but when you are with her you can very clearly see her sweet spirit.

It hurts to see her so debilitated.  On the other hand, I have felt mostly content and at rest with this process.  Dr. Gardner said that this is a bad case of typhlitis, which if you look it up, you will see is really not optimal.  She is very hopeful that she will be able to clear this infection in time and will be able to proceed with transplant as planned.  Despite all of the interventions, Allistaire is tolerating everything extremely well.  It reminds me so much of transplant where there was a lot going on and it looked very scary, but what was happening was well understood and they were able to adequately respond to her needs.  This sort of scenario is precisely why Allistaire stays in the hospital, “awaiting count recovery.”  Chemo is just one piece of providing for her in this fight against her cancer.

These days make clear what it is to be “immune suppressed, ” to be “immune deficient.”  This is what it looks like to be totally vulnerable and without defense.  This is the major downside to chemotherapy, it kills the bad guys and the good.  One day I hope for a means to destroy cancer that doesn’t come at the cost of my daughter’s ovaries, her heart, her bowel.  I get giddy imagining a day when little girls and mom’s and grandpa’s can get cancer treatment without putting them right in the way of other potentially life threatening dangers.  A few years back I read a fantastic book entitled, “Biomimicry: Innovation Inspired by Nature.”  Biomimicry is defined as, “an approach to innovation that seeks sustainable solutions to human challenges by emulating nature’s time-tested patterns and strategies.  The goal is to create products, processes and policies – new ways of living – that are well adapted to life on earth over the long haul.”  The author explains that most often we as humans use the “heat, beat and treat,” methods to create.  We use high heat, extreme pressure, and significant chemicals to create which in turn neither produces as quality products nor sustains the environment in which they are created.  Animals and nature, rather, use processes that sustain the surrounding environment and produce amazing products.  The abalone shell is one of the hardest materials on earth and is accomplished by an elegant laying down of hexagonal molecules in layers that don’t directly overlap.  An abalone creates it’s shell out of materials readily available in its own environment and in such a way that its environment is sustained.  This is not even close to what humans do to create steel.

I could go on and on about the many beautiful accomplishments of nature, but in our scenario, it is the immune system that gets all the glory.  The immune system is amazing at detecting and destroying invaders that would harm the body and it does it in such a way that the health of the body is sustained.  The immune system is the hope of future cancer treatment.  One day, we will no longer have to indiscriminately dump poisons into people with cancer in hopes that the pros outweigh the cons.  No don’t misinterpret what I am saying.  I am weary of a segment of folks talking about chemotherapy like it is “evil,” and should be avoided.  Chemotherapy is a phenomenal gift and has accomplished a lot of good.  Cancer is extremely complex, far more than the average person could ever imagine.  Chemotherapy, in many ways, is targeted and works in impressive and complex ways.  But alas, it is still so far from ideal.  But that “one day,” is already beginning.  The immunotherapy being developed is rapidly opening up amazing options for more precisely targeted cancer cell death, accomplished in such a way that the bodies own systems kill and clean up.  You guessed it, we need more cancer research!  Allistaire needs better options!  What about your kids?  What about your grandchildren?  What about your mom or yourself?  Cancer touches so many lives right in your little circle.  We need better options for ourselves and for those we love!

As today comes to a close, I am so thankful for what the last 24 hours has accomplished.  Sten is here.  I am thankful for his support and sweet Allistaire asks for him almost every time he leaves the room.  This evening she seemed quite upset after having to be wiped down and was crying little silent tears.  Sten and I tried so hard to understand the motions of her mouth.  Finally we figured it out.  She just wanted daddy to sit next to her and hold her hand.  What dear, sweet, unfathomably precious people God has given me.  IMG_2562 IMG_2565 IMG_2567 IMG_2570 IMG_2572 IMG_2573 IMG_2576 IMG_2580 IMG_2582 IMG_2583 IMG_2584

Jan18

ICU

Posted on by
Standard


 IMG_2560IMG_2559As of 8am this morning, Allistaire has been in the ICU.  It is amazing the contrast of 24 hours.  Yesterday, she awoke with cheer and joy and her ANC, (absolute neutrophil count), dropped to zero.  The ANC is the best indicator of the white blood cells available to fight any and all infection.  As of yesterday, she has been utterly without defense.  I have heard of what can happen when your body is without its natural ability to fight.  Now I have seen it.

While I am well versed in much of what has happened to Allistaire over the last three years, todays events have presented a number of challenges she has never faced and are new to my understanding.  Those out there who are medically knowledgable will probably find a number of flaws with my explanation, but I am doing my best to piece together what happened when and why and where we are now.

I will start by saying that Allistaire is stable.  She has never, ever been this sick and never had to be hooked up to so many things.  Currently she has 5 med pumps going, a breathing tube attached to the ventilator, three leads on her chest to track heart rate and respiration (breaths per minute), a transducer hooked up to her Hickman line to check her CVP (Central Venus Pressure) which is indicative of the volume of blood moving from the vessels of her body into her heart.  If her CVP drops, she may be dehydrated and need more fluid.  More on fluids in a moment.  Lastly, she has an Art Line, a special line that goes into the artery of her wrist in order to provide constant measures of blood pressure which is much more reliable than the blood pressure cuff.  Prior to the Art line being placed, her blood pressures were varying dramatically and were not providing sufficient and accurate info for the medical team to assess and respond.

In short, Allistaire has some sort of infection, most likely bacterial.  Over the past week since being admitted she has done incredibly well.  She never threw up, had an amazing appetite, was drinking so well that once her chemo was complete she was taken off of her IV and had tons of energy.  She would bike around the Unit so fast that I would have to constantly remind her to slow down.  On Thursday her appetite started to wane a bit and I was not surprised on Friday morning to learn that her ANC had hit zero.  She threw up her breakfast that morning but was overall fine.  Friday evening she began complaining of abdominal pain.  I assumed that she probably was beginning to have abdominal cramping from diarrhea as she did the last round of chemo.  However, around midnight, she spiked a fever which prompted the nurse to draw blood cultures which looks for any bacteria growing in the blood.  Her heart rate was high (170-180s) and so she was given a bolus of fluids, assuming she was likely a little dehydrated.  She was given two more boluses due to her heart rate remaining high and then a dose of Dilaudid to address the pain in her belly.

The hospital protocol requires a Rapid Response Team if three boluses of fluid are required in a set (relatively short), period of time.  This results in the patient being sent to the ICU.  Additionally, the Dilaudid caused her blood pressure to drop.  For the past three years, this very scenario has been described to me.  I have been told countless times that kids are resilient and look really great even in the face of illness until suddenly they can no longer compensate and it all starts to fall apart.  Due to the nature of the chemotherapy used to treat Acute Myeloid Leukemia, the patients bone marrow is completely suppressed, resulting in neutropenia.  The truth is, they can be very sick and you can’t even readily tell because their immune system may not be able to mount much of a defense.  For these reasons, kids treated for AML are kept inpatient far more while they neutrophils are so low and why we are required to go no further than 30 minutes from the hospital.

When Allistaire arrived in the PICU (Pediatric ICU), she was breathing very rapidly (about 100 breaths per minute), breathing shallowly, her blood pressures would periodically drop very low (down into the 20s) and she was quite agitated from pain in her tummy which was distended and hard.  Her whole body is puffy from fluid.  Her body is having an inflammation response to the infection which in turn causes her vessels to be leaky and the fluids to leak out into the surrounding tissues.  They continued to give her boluses of fluid and added on Norepinephrine which is a vassal presser to cause the vessels to tighten up and constrict, thus increasing blood pressure.  The doctors are referring to her situation as sepsis and that she is in compensated shock.  The primary goals are to address the bacterial infection itself and to assist her body in its great effort to respond to the infection by supporting her in a variety of ways.  The primary tasks were to get a more reliable means of obtaining blood pressures, aiding with her breathing, determine the state of her heart in response to all the fluid, to provide broad, sufficient antibiotic coverage and to determine by CT, what was going on in her gut.

In order to get a CT (Cat Scan), she needed to drink oral contrast which would then take two hours to move through her system.  While this was being accomplished, an Echocardiogram of her heart was ordered and discussion began on how the best ways to determine her blood pressure.  First a transducer was set up with her Hickman line in order to determine her Central Venus Pressure.  Initially this was not working properly and the decision was made to go ahead with prepping to insert an Art line.  It was also decided to put her on a CPAP machine which would more forcefully blow air into her lungs which would not only provide oxygen but also help keep her airways open.  In the midst of this time, she had her Echo conducted.  It took some work to get her set up and stabilized to be able to transport to radiology for her CT.  Once she returned from radiology, everyone was prepping for CPAP and the insertion of the Art line. Right about the time they were ready to proceed, Allistaire threw up.

Throughout the day, the attending PICU doc had discussed with me the possibility that Allistaire may at some point need to be intubated which means a breathing tube is inserted down her throat and attached to a ventilator which would ease her body’s burden and breath for her.  At one point the doctor noted how long Allistaire has been sick (as in the last 3 + years) and said that it was really our choice if we wanted to move forward with this intervention.  She was implying that we did not have to continue to intervene if it was just too much.  To be fair, she had never seen Allistaire outside of this setting and while I found the option appalling and repugnant, I think she was ethically trying to make our options clear.  It was a hard moment.  I also asked her if I should have Sten come out.  She said that while she does not anticipate this being the case and that it is highly unlikely, it could come to the point that they would not be able to extubate her which would mean that our time to ever talk to her again could be limited.  This was when I called Sten to look at flights and see when he could come.  I had no time to explain to him what was happening only that he should come.  After researching the options, he and his mom and Solveig began driving to Billings so that he could fly out to Seattle on the 6am flight and be here by 7:30 Sunday morning.

Once Allistaire threw up, the doctors decided it would be safest for Allistaire if they were to go ahead and intubate her.  The concern was that if she threw up while on CPAP, she could aspirate (throw up go into her lungs and cause damage), where as if she aspirates on the ventilator (which she later did), it would be caught by the “balloon” in the breathing tube and to then be suctioned off.  Additionally, an NG tube or a Salem Sump, was inserted into her nose in order to pull out anything in her stomach including fluid and gas.  The plan throughout the day continued to change as new information was gained.  Results from the echo showed that her shortening fraction had dropped from 32 to 20.  The increase of fluids was also causing her heart to be more floppy and less able to constrict.  This prompted the addition of epinephrine to help her heart muscle contract and in a way, counterbalance the effects of the norepinephrine.  After much preparation, she was sedated (not completely) and they then placed the breathing tube and got that all situated.  The doctor then moved onto the insertion of the Art line which was very interesting to watch.  He used a small wand with ultrasound to determine the location to best place it.  Once it was all set up, he put in a stitch on each side of the line into her hand to secure it into place.

The next bits to tackle were a consult from the ID (Infectious Disease) docs and the surgeons.  The ID docs reviewed all of her past infections and recommended a few changes to her antibiotic coverage.  She is now on Cefepime, Gentamycin, Linezolid, Flagel and Micafungin.  The results of the CT showed typhlitis as they suspected.  Possible reasons to do surgery would be if there were a perforation, obstruction or to resect portions of dead (necrotic) tissue.  However, because she has absolutely no neutrophils with which to fight infection and heal, the dangers of surgery often outweigh the benefits.  Thankfully there is no evidence of perforation or obstruction.  The CT did show a “marked bowel wall thickening of the Sigmoid Colon and the rectum and a mild thickening of the transverse colon. It is suspicious for neutropenic colitis.”

For now she is stable, blood pressures are stable and in a good range and she is much more comfortable.  They are watching her lactate level which is slightly elevated and can be a sign that her body is still working too hard.  The nurse has been able to wean her off both the norepinephrine and the epinephrine.  She will continue to be intubated for now and we simply have to wait for the antibiotics to do their job.  On Monday, and for the following 6 days, she will be given transfusions of neutrophils.  I had no idea that this was possible.  A donor, who is HLA matched with Allistaire, will be given a GCSF (Granulocyte Colony Stimulating Factor) shot that will cause their bone marrow to produce and release neutrophils which will be then collected, processed and given to Allistaire.  Cool huh?!!!

In this midst of this all, Allistaire has done a remarkable job dealing with all the invasion and discomfort. Until she was sedated, her little independent big-girl self, insisted on going to the bathroom in the little potty chair rather than in her diaper.  Throughout she has been very cognitively aware and articulate.  Her greatest frustration has been not being able to drink (no food or drink for now) and she absolutely HATED the CPAP mask.  It drove her nuts to not be able to rub Doggie’s fur up against her nose and such her thumb easily.  Even now that she is sedated, she is still doing well.  A friend visited and when Allistaire heard her voice, a smile passed her lips.  When Solveig said, “Hi Allistaire,” on the phone, Allistaire waved her hand.  The hardest part for me is that she can’t talk because of the breathing tube being positioned at her vocal cords.  It is so painful for me to watch her trying to talk, to communicate how she is feeling or what she wants and not being able to understand.  Thankfully, she is able to communicate yes and no.  There have been a few times when her eyes suddenly go wide and she looks afraid.  This hurts my heart for my girl, but she is pretty readily calmed.  I know my little fighter is in there and her tenacity is serving her well, even if we cannot hear her voice of defiance.

Yes it’s been a rough day, but man, this is the first time in three years that we have gotten to this place.  That in itself is an amazing provision.  I have total confidence in the PICU team and our sweet attending Hem/Onc doctor, Dr. Leger, stopped in multiple times to check in, including at nearly 11pm before she went home to her own family.  Allistaire has a lot of support right now but all seems well.  I am told that once those neutrophils from the transfusion enter her blood stream, they will go straight to the areas of infection and start to battle.  She will likely get sicker before she gets better.  There may be a cytokine storm (proteins in blood from cell death).  It could get scarier before we see better days, but this is what must come.  What gift to have so many people’s brains and experience and persistence come together to care for my sweet girl.  I am in awe at all that we are able to do to support this one small life.  Oh what gift that so few on this earth have ever known.  Life.  Life.  Beautiful life.  And beautiful body, so complex and miraculous.

I’m pretty tired and Sten should arrive early in the morning.  Lord, thank you that though we cannot foresee how our days will go, from morning to night they may swing dramatically, but you are not caught off guard.  You know the days before us.  Thank you for your provision of so many amazing people and crazy cool meds that can fight and care for Allistaire.  Thank you for that incredibly beautiful little girl that I can only love more every single day!

 

Jan9

All together different

Posted on by
Standard

IMG_1427Today we walked down that long white corridor, light reflecting up from glossy floors, that tunnel to the Unit, but without trepidation, without terror, without the clamp around the throat threatening to cut of your breath.  Today we delighted in the amusing sight we gave the world around us – a little bright flower, a bald girl giggling with the effort necessary to tow the absurdly overloaded wagon and I pushing the equally loaded wheelchair, coffee in hand.  The tower of the hospital surrounded in a white swirl of fog made it appear we were entering another world, a secret passage to some Narnian existence.  And so it is, we reenter the world so strange, yet so familiar it has become beloved.  There a whole cast of friends surround us and an altogether different language is spoken.  Creatures of unexpected features are common here – the gorgeous unfettered curves of craniums, luscious curve of cheeks round as grapefruits, hair flourishing in disregards to the confines of foreheads, upper lips, backs or silly breaks between brows, lines swing from chests and poles accompany these little ones, simply one more appendage.

We all know what we’re doing here.  We’ve come to slay, to annihilate, to wield weapons of mass destruction.  We have come to destroy a destroyer.  Ushered down the hall to the very end, we enter our new room, Forrest 7A:308.  This is the MIBG radiation room.  The room is lined with lead.  Two doors, one lead, protect those on the outside from what typically takes place in these few square feet.  It is no matter that cancer is merely a wee little cell, it is within its confines that disaster has taken hold and must, must be stopped or its insatiable fury to divide and conquer will force its own suicide.  So the poisoning began promptly at 10 am, with joy, with chatting, with laughter, with ease.  First the Cytarabine, then the Etoposide and finally the magical potion – blue thunder – which later turns Allistaire’s pee a fantastic happy green.

I slept well last night and was simply ready to get this show on the road.  This round, this entrance into the constraints of the hospital this time feels all together different.  I walked through that door with hope.  There was none of the dread of the last round of chemo.  It worked and there is the hope and expectation that this combination of chemo will continue to do the same.  Allistaire is full of life and glee and a fair amount of weight packed on to get her through the dip in appetite that will invariably come.  Our great volunteers from Side-By-Side (a ministry of University Presbyterian Church) came again today, just as on previous Friday’s.  Allistaire cannot get enough of them. When they arrive she is beside herself with silliness and when it is time for them to leave, with her most forlorn face possible, she asks if they cannot play longer.

So we look out into the days ahead, at least 28 of them, looking for what the Lord will lay before us.  Let us make the most of these days!  Let them fill and swell with all the Lord sees fit.  Let us seek diligently to love each face that enters this room.  Let compassion and love fill my heart for each nurse, doctor, fellow parent, sweet patient and staff person that gives so tirelessly to care for us.  God help me to make the most of the opportunities you give, not disregarding them because of laziness or intimidation or selfishness.  We have been placed by the living God into these hallways and rooms for this specific window of time because of His great and beautiful purpose.  Yes, we are here to walk through each step to fight for Allistaire’s life and we will, I will!  But Lord, help me to keep my eyes open and my heart willing to every open door you given and fill me with your Spirit that Your love, Your light, Your hope can overflow!  That is my joyous hope.  This is what invigorates my spirit.  Let me not deprive myself and others of the bounty that He intends!

For those of you who pray for our days, pray for these things as eagerly as you call out to God to heal Allistaire!  You know what I want to see God?  I want to see you raise the dead!  I want to see you raise the dead cold heart of stone and breathe life into dry bones in the wilderness.  That is the miracle I’m asking for!  Do you hear me God?!  I am calling out to YOU the Ancient of Days, you who tarry only because you want that all should know the eternal, abundant life you are holding out to each of us through the sacrifice of Christ.  Father, who am I that I should lay down my life, what is my life, but Lord I do, I do!  I say yes to whatever you have for me because I know my suffering is temporary, it is short, it is light and I am asking for the ultimate pay-off: that other’s should have eyes to see you, that people would be drawn to your irresistible beauty and magnificence.  Oh Lord, you know how I love, love your otherness, your ways that are not our ways, your good that surpasses our comprehension, the paradoxes that so enamor – oh that others could see you for who you are.  And Father, show me more of yourself, more, more!  I want to see new facets of your face, new angles of light, even shadow.  Lord, you are all together beautiful.  May I greet each day with this deep, swelling joy.

It has been nearly three weeks since Allistaire and I left the hospital.  I didn’t want to leave for fear of all the inevitable exposure Allistaire would have, but it has been a wonderful break.  It is SO great to have not one person walk into your room at night, to stagger to the bathroom in disarray with no regard to modesty.  Sten and Solveig came out for a week over Christmas and we had such a great visit.  The girls played  and played and played and giggled ceaselessly.  They have such a better time interacting outside of the hospital, without all the constraints.  Uncle Jens and Aunt Jo also came out for a visit from Bozeman.  We made the most of good weather and went to various play grounds as often as possible.  Friends of a friend were out-of-town for Christmas and allowed us to use their home which made it possible to cook Christmas dinner and be together with my parents.  All in all it was all we could possibly ask for with our time out of the hospital.  It wasn’t home and that’s a bummer, but boy did we love the freedom.

This is our second 39 day round of chemo, identical to the last one.  She will have three different chemos each day for five days and then it is simply a matter of her blood counts dropping and eventually recovering.  Twenty-eight days is the standard estimate of how long this drop and rise process takes.  Day 28 will be February 5th.  There’s nothing magical about February 5th, it’s just an estimate.  Once her ANC gets back up to 200, she will have a bone marrow biopsy and aspirate, another PET/CT, echocardiogram and an EKG.  I will include below some pictures of her last PET/CT.  I believe the one that is just a white image is from the CT and the one with reds, yellows and oranges is the PET scan.  The computer overlays/combines the CT and the PET scan giving more complete info.  And in reality, there are many, many different images because they are like horizontal slices of her body, not simply one top-down view.  The brighter the image on the PET scan, the more metabolically active is that location.  There are many bright spots but that is because there are numerous places in the body that are metabolically active when given the infusion of glucose, but the cancer cells show up differently and in locations that would not be expected.  They use this scan in combination with the CT which shows physical masses to get a clearer, more detailed idea of what is going on with her chloromas.  I mentioned before that they are not sure that the spot on her left hand is actually leukemia because it has remained the exact same as the base line scan.  I just learned in our clinic appointment, that this idea is also supported by the fact that there is no corresponding lesion showing up on the CT.  They think that the area of brightness, which is in the web space between the thumb and pointer finger on her left hand, may actually be due to her thumb-sucking immediately prior to the scan.  I have asked that they do whatever necessary to really sort this out because I would really like to avoid focal radiation to her hand, which could deform the bones, if it is not clearly necessary.

Once this testing is complete, she is nearly ready to begin conditioning for transplant which includes radiation and chemotherapy.  I am not sure if there is additional testing that needs to be completed.  Were she older she would have to complete a pulmonary test to determine the health/strength of her lungs.  Of course there are various blood labs that look at organ function such as that of the liver and kidneys, but this would already be done routinely.  There may also be some period of time where they want her blood counts to recover more.  I believe her ANC would ideally need to be 750, but in reality, they would only estimate how long this could take and calculate that into her schedule.  I anticipate hearing from Dr. Gardner sometime in the coming week more details on timing.  She said she wanted to discuss with Dr. Bleakly (the transplant doc whose trial we are hoping to have Allistaire participate in) and get a schedule on the books.  It is exciting to step nearer to that mighty goal of transplant!

IMG_2349 IMG_2359 IMG_2368 IMG_2369 IMG_2372 IMG_2380 IMG_2398 IMG_2416 IMG_2440 IMG_2442 IMG_2449 IMG_2455 IMG_2458 IMG_2460 IMG_2467 IMG_2472 IMG_2478 IMG_2482 IMG_2485 IMG_2492 IMG_2495 IMG_2501 IMG_2506 IMG_2509 IMG_2515IMG_1354 IMG_1350 IMG_1349 IMG_1355 IMG_1347 IMG_1346 IMG_1433 IMG_1429 IMG_1430