Tag Archives: AML

Feb24

Severely Diminished

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Pediatric Echocardiogram Report:   Name: Allistaire Kieron Anderson

Summary:

1.  Severely diminished left ventricular systolic function

2.  The left ventricle is moderate to severely dilated

3.  Ejection fraction (apical biplane) = 11%

4.  The left ventricular fractional shorting is 8%

5.  Mild to moderate mitral valve insufficiency

6.  Markedly abnormal left ventricular diastolic function

7.  Dampened systolic amplitude due to poor cardiac output

8.  Moderately dilated right ventricle

9.  Severely diminished right ventricular systolic function

10.  Estimated pulmonary artery diastolic pressure is 16mmHg above the right atrial pressure, based on a pulmonary insufficiency jet velocity of 2.00 m/s

11.  The peak tricuspid regurgitation velocity is 2.9 m/s=34mmHg

It goes on for three more pages giving the details that build the summary above.  I didn’t cry immediately.  My face stood still as I scanned and scanned the words, horrified at how many aspects of her heart are “severely diminished,” or “markedly abnormal.”  Somehow I made my way to the quiet room before I began gasping for air, eyes wide, eyes gripped closed and mouth wide with silent ragged terror.  What do they call it?  A flat spin, when a plane begins this awful downward spin from which there is no return?  It seems we are caught in this strong silent force, pulling her downward, down at frightening speeds.  I see the world whirling, whirling, images blurring, tears streaming and all the while mouth screaming in silence.  I can’t hear it.  I hear nothing.  I watch from outside and am trapped with her inside this gravitational horror from which it seems no effort can overcome.

The cardiologist says she does not know, she cannot predict if Allistaire will be able to recover from this heart failure.  If she does, it will take months.  The primary question is whether or not we have the time for her heart to heal.  A question no one can answer.  A question that feels futile because I don’t see how it will impact what we’re doing here.  We don’t really know the status of her disease because her heart is not in a condition to sustain sedation for the procedures necessary to get the answers.  Fortunately, her ANC, which hangs around 200, is not so recovered that it is necessary right now, or even advantageous to pursue the answers.  But she will of course need more chemo.  It seems abundantly clear that if she can ever recover enough function, it will take a long time, longer than the leukemia will sit obediently back and wait for.

On Wednesday afternoon, we will have a Care Conference meeting with Dr. Gardner, her oncologist, one of the cardiologists, and one of the ICU attending doctors.  Ashlei our social worker will be there hopefully and last night through tears and few words, I called Sten to come, come to Seattle.  Sit with me Sten and bear the brunt of these words that pummel and burn.  Dr. Gardner will lay out the chemo options.  I know there are several that are not considered hard on her heart that have been effective in the past, whether or not she can endure them at this low functioning or not, I do not know.  I do not know.  Dr. Kemna, the cardiologist I met with yesterday, said we need to discuss now our plan, our desires, should some more extreme intervention become necessary.  She made the point that should Allistaire require interventions like being on a ventilator or on ECMO (a crazy amazing terrifying machine that circulates the blood for the heart externally), we need to have a degree of confidence that she could come off of them.  Yah, because otherwise, what would be the point?  What’s the point of putting her on a machine to sustain her life if there is no hope for life on the other side of these?  This is what the ICU doctor alluded to the other day when she said we needed to discuss codes.  If Allistaire codes, if her heart stops, should they intervene, should the room become a mass of swarming bodies intent on reviving her flesh, pulling it back from that dark place?

I’ve been here so long, circling, pacing, hunting and being hunted.  “Jackle on your heels,” is how my friend referred to it yesterday.  The shock doesn’t let up.  It seemed at last we had that beast pinned, we needed only to enact our last attack, the last twist of its wily neck to break it for good…but then I feel the unexpected pressure of noose cutting off my airway.  Without sound, without anticipation, the breath is being extinguished.  I stutter and am confused, “But don’t you see, don’t you see, we’ve almost killed this foe?  What are you doing?  Let me finish this act.  Let me at long last put an end to this stalker, that I have danced with night after night, lacing through the trees in the dark of night forest.”  No response, just greater and greater constriction.

The cardiologists have increased her Milrinone to .75 now and taken off the Carvedilol.  Apparently the Carvedilol can not only help with heart failure, but can actually induce it when the heart is so, so sick.  This morning they will have to hold her Digoxin because her potassium is a little low.  It is ever a careful, delicate balance, intricately monitored.  They can go up on the Milrinone, only to 1 or maybe 1.2 and then they would consider adding other meds, norepinephrine and/or epinephrine.  I feel myself giving over a little, letting go a little of my desire to be so involved in the details of this med or that at this level or that.  I am drawn to her neck, that warm incredibly soft place where I should like to stay.  I am pulled to gaze at her cheeks, the perfect slope of her nose, to run my hand up and down the beautiful softness of her arm, to listen intently to her sweet voice.  I wish to dwell forever pulling the curve of her little body into the curve of mine.  My whole body grieves the thought of ever being separated from her, having her pulled  gently, silently away, away…

Perhaps I can just take her and run.  How I long to soar with her away from this place.  I am just now realizing I had dreams of flying last night, of running soft through the grass and then just lifting off.  But there was too a severe hill, so steep that you could never, ever climb down, rather it was a ledge, a cliff.  But the girl in front of us said she thought she could make it despite having seen her brother fall straight to his death.  I told Allistaire, who crawled behind me, No, we will not go this way, we will go around, we will find another way down.  And then that girl jumped, she just leapt and indeed fell utterly to her death. I felt flattened as I slept last night, every single surface of my body pulled so heavy against the couch/bed. My face is flat.  It is weary and aches dull from hard crying.  A new beautiful day has come.  I acclimate, I adjust to this new reality.  Just I have done on countless turns in this spinning world.  Get slammed.  Slowly arise.  Walk tentatively, knowing it is likely you would be slammed again to the ground, cranium ground into dirt.

The light is growing longer in the evenings and on these clear days I am transported back to late summer evenings with Allistaire, out on pass from the hospital, going to Magnuson park after all the other kids have gone home, and then we come to play.  We would arrive as late as we could back to the hospital.  There is a sweetness to those memories, a glow of mango light at the horizon blending into green and the vast stretch upward into perfect blue of night.  Birds singing in the evening and trees all lush, green upon green.  I remember clear still mornings walking high on the sky bridge of the 7th floor, Mt. Rainier looming blue to the south, awaiting that pink fire of first sunlight.  The cold of new day, birds, ever singing, twittering, calling, glorying in their existence.  I felt strangely serene, with the cold clear thought that perhaps I was there to help her die well, to stay by her side, loving, caring for her through each step toward that end that seemed ever closer.  Those days two years ago loop around wide to now, linking, completing a circle.  I think back to those days and raise up those truths, those clarities the Lord showed me then.  The suffering and the joy sit side by side, neither undoing the other, both deep, both broad, both stretching to the horizons, swamping and flooding my heart.

The music slows, vast space between each note.  My heart calms, slows, rests.  As I came down the hall to the Unit at the end of nap time and saw that perfect white sparkle of first star, alone in the evening sky, I paused long, wondering, wondering, what do I pray?  What do I come to You and ask oh Father, oh Father.  I seek to abide in you, rest in you, just rest, still my sore arm from its work, let me lie here and rest in You.  I have no idea what the days ahead hold.  I have no strength to look out long, scanning the horizon, squinting to try to make out what is ahead of us.  Rather, I shall curl here with my sweet girl and rest in the shadow of His wings, sheltered, beloved, held.  Be still my soul.

 

Feb22

Wait and See

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IMG_2792Strange how you can have expectations, just ideas you’ve grabbed from where?  Thresholds and time frames constructed of air, of nothingness, no structure to sustain them and yet, they hold power, they help you to endure or enforce the heavy feeling of defeat.  Somehow in my mind, when Allistaire first moved to the ICU, I thought, oh, we’ll be here for several days, maybe a week.  Upon what basis did I come up with those numbers?  Out of thin vacant air.  Today marks her 37th day in the PICU.  Today we begin our 6th week.  I remember a friend telling me they were in the PICU for two months.  “How in the world do you do that, survive that?” I wondered.

But here we are, now with no end in sight.  Last Tuesday, 2/17, we were scheduled to be transferred to the  BMT (Bone Marrow Transplant) team.  We were supposed to be at Ron Don with a few weeks of testing to complete before conditioning for transplant was to begin.  It stings to move past those dates, knowing transplant, well, who knows if and when transplant will come.  In my mind I had counted it out and we were going to be home by the end of June and then we lost July with the idea of pushing back transplant another month to give her heart time to heal.  The reality is sinking into me that she may never get to transplant, or at the best, it could be far off.  A summer gone.  The doctors tell me we must be patient, and wait and see, that it is often best to be patient.  Patience, yes, I know something of patience.  But while I’m seeking to be patient, leukemia cells will divide and multiply totally irrespective of our best laid plans.  While I’m here with Allistaire cloistered away in the hospital, Solveig’s life goes on and I will have missed nearly an entire year her schooling, this added on to the many other months of her life from which I have been absent.  To sum it up, I just feel sad these days, a deep pool of sadness ever below.

After 48 hours of being off of Milrinone early last week, the cardiologists decided to put her back on it.  Her heart rate and respirations trended up slightly and there was the issue of nausea to consider.  They hoped the Milrinone would allow them to titrate up her Carvedilol and deal with these symptoms.  While her heart rate and respiration have dropped slightly, her BNP which was 4800 last Monday, trended down only as low as 3400 and is 4600 as of today.  I feel disheartened.  Yesterday they decided to put her on Digoxin, another heart med.  Digoxin is an older med that like Milrinone, can help with symptoms of heart failure but does not necessarily help the heart to heal.  The idea is that by carefully monitoring the blood levels of Digoxin and adjusting the dose as necessary (Digoxin can be toxic at higher levels), they can address her symptoms of heart failure in the scenario of a future weaning of Milrinone.  They will continue to have to monitor closely her potassium levels as a number of her meds can impact potassium levels.  Adverse effects and toxicity of Digoxin are more common when potassium levels are low, “since digoxin normally competes with K+ ions for the same binding site on the Na+/K+ ATPase Pump.”  Her Lasix draws off potassium which they replace in her TPN (IV nutrition).  On the other hand, she also takes Spironolactone which, “often increases serum potassium levels.”  It is amazing the delicate balance of electrolytes that allow our body to function properly and thus the need for careful monitoring by the doctors.  Blood pressure must also be monitored closely given that a number of these heart meds reduce blood pressure.  Yesterday, they held her Enalapril for one dose and then decided to gone back down a little on her Carvedilol given her blood pressures over night were a little low. Too low of a blood pressure will prevent her from being able to take the heart meds she so desperately needs.

Tomorrow she will get another echo.  I don’t feel very optimistic.  The BNP hasn’t gone down really.  We’ll see.  She did not get her BMA (Bone Marrow Aspirate) done last week for two reasons.  It was originally planned for Tuesday solely based on protocol.  If there are no blood counts by Day +35 of the round of chemo, they go in and take a sample of the bone marrow to see what’s going on.  As it happened, her ANC (absolute neutrophil count) finally started coming up last Sunday so the BMA was automatically pushed back until her ANC reached 200 which is the standard time frame with the idea that at that point there are enough cells to look at to make a determination of how her body and cancer is recovering.  However, while her ANC has reached 200, they are still choosing to hold off on both the BMA and the PET/CT because both require sedation.  At this point, her severe heart failure makes anesthesia more risky.  Any sedation would be done in the OR (versus the room or clinic procedure room) and require a special cardiac anesthesia team.  Because it is not necessary that her BMA or PET/CT take place right now, they will hold off until her heart recovers more or it becomes imperative to see what her leukemia is doing.

Coinciding with the rise of Allistaire’s ANC, she has had increased pain in her belly.  Once her ANC hit 200, the doctors decided to stop the three antibiotics she’s been on for the past five weeks.  I was a little hesitant to do so without a CT to be sure that her typhlitus hadn’t worsened.  So Friday afternoon she had the task of drinking four ounces of apple juice mixed with contrast.  After nearly 45 minutes of effort she threw up about half of what she had slowly sipped down.  The nurse re-loaded her cup and she finally got in the minimally required amount.  The results of the CT were mixed.  “There is minimal residual wall thickening involving the sigmoid colon.  The rectal wall thickening has nearly completely resolved.  New from prior, the cecum is decompressed and there are areas of mild cecal wall thickening.  There is a slight interval increase in degree of surrounding fat stranding.  The remaining gastrointestinal tract shows normal course and caliber without evidence of obstruction or focal inflammatory changes.”  So overall, she continues to heal and now that her marrow is producing cells, hopefully, the healing will soon be complete.  But because there is some additional locations that indicate typhlitus, they are putting her back on one of her antibiotics, Meropenem, for now.  Not surprisingly, but sadly, her lungs and liver show evidence of her heart failure, “Interval increase in size of small right pleural effusion with bibasilar subsegmental atelectasis and likely superimposed mild interstitial pulmonary edema.  These findings, in conjunction with apparent vascular congestion of the liver may be related to a degree of heart failure.”

The thought that Allistaire’s heart must improve sufficiently to hit that benchmark of an Ejection Fraction of 45 within two months has felt so daunting.  I was relieved to run into Dr. Gardner in Starbucks one morning and hear that she has been brain storming Allistaire’s situation.  My face immediately lights up when she says things like that – I love and am honored that she constantly holds Allistaire in her thoughts even when she is not physically near.  I love that she too is so passionate about finding a way through for her.  We are both assuming her marrow remains in remission.  So she proposes we put her on Azacitadine given that it worked before.  (Allistaire did 7 month-long rounds of Azacitadine when disease was found post transplant and it put her back into remission and kept her there.)  I wondered about possibly using Decitabine since it’s a little more hard-core than Aza.  We do still have her chloromas (solid leukemia) to consider.  She said she would consult the other AML docs.  She also mentioned Clofarabine as an option.  The conditioning chemo for Allistaire’s last transplant was Clofarabine combined with Busulfan.  Busulfan is definitely not an option but Clofarabine could be combined with Cytarabine.  All three of these chemo options are easy on the heart and have shown in the past to be effective against Allistaire’s cancer.  Wahoo!!!  I love options!  After Allistaire’s first round of chemo from this relapse, which put her into remission, I really did not think we would be in the position of being desperate for transplant.  But it seems that we are here again, desperate for transplant, a terror that may just bring her healing.

I called our financial counselor here at the hospital to see what Allistaire’s bill is.  I couldn’t help myself, knowing all that has transpired over this last month.  I told someone the other day I thought Allistaire was on at least 15 meds, so I asked the nurse to print me off her med sheet: twenty-five different meds each day, most of which are given 2-3 times per day.  Since she was admitted on January 9th for this round of chemo and the following PICU stay, her bill is $1.1 million dollars.  Her room alone is $12,700 per night and each GCSF shot costs $1,040 which she got each day for 33 days.  This puts her total bill since diagnosis well over 5 million dollars.  Isn’t that staggering?!  Isn’t it crazy that one round of chemo with ONE infection has cost $1.1 million?!  What if that money could be put toward cancer research?  What if we could invest millions of dollars upfront to find better, more effective ways of curing cancer?  What if we didn’t have to poison the body, destroying the heart and suppressing the marrow so far that the body is left without defense from even the most common attacks?  We cannot take the money that has been invested in sustaining Allistaire’s life, nor the money that will continue to be spent and give it instead to cancer research.  Such an exchange is not possible.  But the need for money put up front toward cancer research is so clearly desperately necessary!

Many, many of you have asked me how you can help.  You have felt powerless to do anything to help Allistaire.  Giving to cancer research may not feel like directly helping Allistaire but it is!  First, it is a tangible way that you can show your love and support for Allistaire and our family on this journey.  It is tangible.  I see your name when you give and I feel blessed that you would stand by my side in this fight, that you would cry out in anguish for more!  Will you stand beside me?  Will you give?  And you know what?  We don’t know how long Allistaire has, but she has lived long enough since her diagnosis to not only be witness to, but be directly effected by new developments in cancer research!  Cancer research in the last two years is literally what has provided this combination of chemos that has put stamped down HER cancer and put HER into remission!  This is not some ambiguous, indirect, vague blessing.  Cancer research is precisely what provided her last transplant which has given her life the past two years.  You say you want to help.  Your heart is heavy with grief for us.  You wring your hands wondering what you can possibly do.  GIVE!  Support cancer research at Fred Hutchinson Cancer Research Center!  It’s not hard, it’s not complicated.  Give.  Please.

Click HERE to support me in this year’s Obliteride where I will once again have the joy, the sorrow and the honor to tangibly fight this foe that seeks to tear away the life of Allistaire and many others, so beloved.IMG_2791 IMG_2790

Feb18

Weeping

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IMG_2777Every day I think, maybe today will be better, maybe today things will turn around, but every day I feel my face slammed hard up against the wall, the hot breath of terror hissed into my ear, knife against my throat.  I feel I can’t breathe.  I hold back tears more times than I can count.  I’ve felt frantic, in shock.  She’s always overcome, there’s always been a way through, but maybe, maybe, maybe this really is that closed door we have so long feared, dreaded.

Her BNP today is 4300.  I don’t know why.  “Heart Failure,” is all I hear now.  It supersedes everything else.  Her echo was terribly bad on Monday.  Her ejection fraction dropped yet further to 18 (down from 29 last week) and her shortening fraction is somewhere around 9 – I never heard exactly, just a number the cardiologist thought she remembered but I never tracked down because those numbers are just like ragged rusty nails dragged hard against my skin.  They tear and burn and with all my flesh I despise them!  I hate them with violence and I want to tear them to shreds.  I want to explode with rage against them and somehow by force of will destroy their reality, tell them NO!  You CANNOT be.  You are not allowed here.  You are forbid to bind yourselves to my child!

I’ve been trying to get her to eat.  Ten bites of chicken noodle soup was the goal for the first half of the day.  Three bites of apple sauce.  So when she threw it all up, it stung with utter defeat and the words of the cardiologists berating my heart, “Nausea and lack of appetite can be a sign of heart failure.”  I strain to find some other cause, some other plausible explanation.  And there are – her ANC (Absolute Neutrophil Count) started to finally come up on Sunday after 30 days at zero.  Sunday it was 30, then 93, 75 and today 172.  Her belly pain has increased substantially with pretty consistent pain throughout the day.  My thought is that the pain is related to the increase in white blood cells which go immediately to where healing needs to take place – in her gut.  This causes the pain and “worse before better,” just like the infusions of granulocytes did.  There is a lot of evidence too that she is having substantial pain related to anticipating pain.  This ICU stay has terrified Allistaire like nothing I have ever seen.  It breaks my heart that even the nurse just coming to scan her ID bracelet causes her to cower in fear.  She has experienced so much physical pain and she feels she can trust no one not to hurt her.  Oh it hurts my heart, it hurts, it hurts.  So now she is also afraid to eat, afraid of the pain in her tummy and just approaching her with food on a fork causes her to cry out in pain.

I have long sought to yield Allistaire to the Lord, to lay her down at His feet.  By God’s grace and His Spirit at work in me, I have bent my knee time after time, knowing that He is God, He decides and it is not because He needs some sacrifice from me.  While it must seem mad to some, perhaps to many, I really believe that God will bring good, incomprehensible good of unfathomable proportions from these losses.  But oh, how it hurts so bad.  Suffering and loss are not some abstract yielding.  It hurts down to my fingertips, they ache with blood saturated with pain.  My flesh throbs with the deep, deep sadness of loss present and anticipated.  In walking with God I don’t just get to say yes, I submit to your authority and sovereignty as God and get to skip over these woes.  I walk, I walk, intimately aware of every detail.

Yesterday morning I sought to be still before the Lord and wait patiently for Him.  The day before I found myself frantic because all that is in me yearns with brute force to be able to turn this tide.  I see our doctor walking down the hall before me, whistling.  For him, he knows we are doing all we can and in that satisfaction he can rest.  But I walk down that same hall behind him feeling my heart exploding and leaking away from me, legs quivering with sorrow soaked weakness and no matter how well we do all that can be done, it will never be enough.  It is not satisfying to me.  I want Allistaire to live!  It is hard for anything less to ever feel like enough.  I went home to Montana this past weekend and it was good.  It seemed strange that such a place is real – such an extravagant beauty and gift is that place and is ordinary life.  Oh how I long with desperation for ordinary life.  A little blue bucket with yellow handle hung from the bush by the driveway, now visible because of winter’s taking away of leaves.  It just hangs there, piercing my heart right through with memories of this summer when Allistaire and Solveig would play in that crowded hedge of bushes, their little domain, their fort.  I cannot get that blue bucket out of my vision.  We went about town, just the three of us and it was good but still it took so much not to just cry and cry and long for a time when this might all be behind us and there are four, four, four as it should be.  I think back over last summer when we really thought this might all be okay, maybe she had escaped and maybe we could really live.  Those memories precious, feel like distant, far off lands you wonder if they are truly real.

Yesterday morning I sought to be still before the Lord and wait patiently for Him.  I rose early to exercise, shower and eat breakfast.  As I neared the Starbucks line, I caught sight of a little girl I know and her mom and dad.  They now live in House B of Ronald McDonald House, in the very same apartment Allistaire and I lived in after her transplant.  They have been given a room there because this sweet girl is now on Hospice.  Only a month ago I saw her running around Ron Don, bald head and feeding tube, but joy and life abundant.  I saw them a few weeks ago, with shoulders slumped and flat faces and the news that there is nothing left for her.  Nothing left.  They must give into that beast.  And I saw her face yesterday, distorted by her tumors now everywhere in her body, her eye bulging but shut closed, flesh strained and contorted purple from the pressure beneath.  I looked upon cancer and its devastation as I went to get breakfast.  My heart tattered for them and fumbling for words and perhaps silence that loves. I felt I was looking at my future.

I’ve always known it could come to this.  But as this darkness closes in and the light seems so dim, oh how I long to turn away, to flee, to scream so loud and unending that I can no longer hear these words of doom.  I weary of numbers that slice.  The thing is, I know the Lord will be with me.  I know that He will hold me up as He does today.  It seems too awful to endure and if so, that means I won’t have to endure it will I?  No, I very well may have to walk, one tedious excruciating step after another, but I know I will endure.  But why, why must this be?  What is the point?

A friend of mine whose son died recently fears that her son’s death was punishment from God.  How I long to offer her words of life that would take away this overwhelming burden.  I went to the passage where Jesus sees a blind beggar and His disciples ask Him why this man was born blind, was it he or his parents that sinned.  Jesus responds in John 9, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.”  This man was desperately poor and blind from birth for the direct purpose that God’s work might be displayed in his life.  What sort of exchange is this?  Why this wretched suffering so God can get glory?  Does He really need more glory?  My gut response to the idea that God would cause/allow suffering for His glory is that He is an arrogant asshole.  But this is not the end point, His glory is not His aim.  His work in our brokenness manifest His glory for the direct aim that we might see Him for who He really is – that His glory would reveal His true self as our only salvation, our only hope, our only source of life.  He seeks glory that we might know His love, for that is His ultimate glory, His great love.  He loves us and He wants us to have life and He will exact whatever it costs to give us eyes to see how desperate we are for the life He offers.  He loves us and He is ever extending His hand and inviting, inviting us in, in to dwell with Him and to be satisfied.

Why must Allistaire suffer?  Why must I?  In my finite view with my finite heart I can only guess and grab at a handful of small reasons.  But what if it is for my friend?  What if in my brokenness she can see the hand of God extended?  What if He makes His glory known in my life for the express aim of drawing people to the only source of life, which in itself is ultimate mystery, ultimate suffering, ultimate life.  It is the bled out heart of God through the sacrifice, the death of His Son Jesus Christ that life in Him is made possible.  Who am I to liken myself to Christ?  What is my life?  It is but a breath, a vapor, but it is my great, immeasurably dear gift to Him.  Shall I suffer?  How shall I live out each of these days that seem to cut and gouge relentlessly?  I walk, nay, I am carried by Him.  I now rejoice in the dependence in Him I once reviled.  I know not the days ahead, I even dread the hours that will bring by the cardiologists.  I don’t know how to let go of this fight.  I don’t think I shall until there is nothing left, nothing left.

Most High God who has come down so low, compassionate, merciful, gracious High Priest who is acquainted with all my sorrow, carry me.  Make your works displayed in our small lives, for your glory, so that we may all swoon at the beauty of your love that causes us to fall at your feet and be held in you.  Spirit of God, help me to be still and wait patiently for you.

Here is a link to sermon by John Piper about the blind man.02131519180213151920

Feb12

Stagger, Tremble

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IMG_2751We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.  (2 Corinthians 4:8-9)

Hard pressed.  Perplexed.  Struck down.  The weight of sorrow presses so heavy on my brow.  Sensations so familiar, so brutally common.  How many times have I looked out the windows at this scene, the sky, these clouds ever in motion, wondering, desperate for a way through.  I have never had a stalker, never been abused.  But I taste the mineral tang of terror reinforced again and again, blood on the tongue.  The framework of my days is forced to contort yet again to fit these new truths, these numbers that rip and snare.  My heart exposed from tearing flesh.  Assault, violence, silent snuffing out with dark weighty force.  I weary circling round and round with this foe.  Oh hard pressed, gravity compressing my chest into the ground, threatening, suffocating, no relief.  Relentless.  I catch a breath and am forced down again.

This morning I saw it, that golden light skipping, glinting, light gleeful on current and blue so blue.  Green of trees and of grasses, bending like wave, accepting, receiving contortions not offered but forced by wind, yet mild and soothing in the acceptance.  That bend in the river approaching Ellensburg, I anticipate, I am eager for that curve and strain to catch sight of it.  Scene after beloved scene framed by car window, speeding by, brief but so known, so loved and familiar.  Great hill covered in snow, in extravagant purple drapery of flower, the color of candle warmth in autumn, I know thee beloved rise of land.  And I yearn for you.  My whole being angles forward in desire, attraction.  Without thinking, with gut response, I swoon as I see us flying over asphalt, east, east, oh home, dear home.

I will myself to turn, to be present, here, now, in this place.  Day by day I must walk.  Another day with numbers that do not change.  A BNP that rises here and bobs briefly down, never nearly low enough.  Every day the same, the same, the same, “no data,” the labs read.  “No data.”  There is nothing, not a single white blood cell in 28 days.  No sign of marrow stirring.  Silence. Absence.  Cavern empty.  And yet, she has changed.  That girl thrust so violently under dark water, held down as she struggled and flailed and at last went limp and silent, she is rising, rising.  Light returning to her eyes, giggle to her mouth and wiggle, joy, willingness to interact.  Allistaire Kieron Anderson is emerging from this ragged fray, this assault.  I gaze at her as light in perfect streams enters through window and passes over her face, illuminating a surface of perfect softness, multitudes of tiny blonde hairs.  Peach fuzz.  Irresistable to the touch, the softest soft, made more beautiful by sensational curves of cheek, perfect little nose and round landscape of chin.  She plays and talks and wants me to see what she’s done, what she’s created.  I swoon and am drawn in, her irresistible pull of delight.  I adore her, my whole being arches forward, captured by the beauty of her sweet spirit.  I cherish her.

Heart failure.  Like deep thunderous, violent thud of sledge-hammer, the words pound with brute force, threatening to explode my ribcage.  Heart failure.  I tell Dr. Hakens how I hate to hear those words.  “Well, you can’t sugarcoat failure.”  Another blow.  Monday’s echo was devastating.  The door to transplant slammed closed.  Her ejection fraction was 29 and shortening fraction 12.  The wind knocked out of me and suffocating flee, flailing to grasp some bar of hope, some explanation that in its concreteness demonstrates finiteness and thus capacity for domination.  What must be do to stop this torrent of loss, I wail?  Are we doing all we can?  We push through, we push, we walk forward.  There must be a way, there must.  This cannot be it.  Oh don’t let this be it.  How can we accept defeat.  How can we just let this bright force slowly fizzle and die?  All we have known for three years is FIGHT!  How now can we surrender; raise the white flag and say enough?  Death as end point has always, ever been there – stark on the horizon.  A black silhouette impossible to disregard, impossible not to recognize.  But my visions of that last great battle have always been a fight to the last breath, a fight with every last weapon, where if death comes, it comes because at long last we are deplete of weaponry and cancer has won.  But agony, swamping sorrow to still have great weapons to wield and yet, simply no strength left, mere collapse.  This image wounds in a uniquely awful way.  I breaks my heart a fresh.

We have devised a two-part plan.  With the direction of Dr. Hong, our cardiologist, her cardiac medications are being aggressively adjusted.  She needs to be on Enalapril, a drug she has taken the past two years but has been off of the last mouth because it must be taken by mouth, not having been an option due to her typhlitis.  Apparently, Milrinone, the heart med she has been on, doesn’t work in such a way as to enable the heart to rebuild function.  It is more of a stabilizer and optimizes blood profusion.  This has been essential with the great fluid load of her infection and need for healing of her gut.  In order to begin taking Enalapril, the team of doctors decided to push up the timing on her CT which ended up happening late Monday evening.  Thankfully the results of the CT were great and indicated “almost complete resolution of typhlitis,” and only “minimal residual thickening of the bowel wall.”  Thus Tuesday morning began with her first dose of Enalapril at half the max dose.  That night her Milrione was weaned down from .47 to .3.  Yesterday, her Enalapril was increased to its max dose and Milrinone turned down to .25.  The goal is to also add on Carvedilol today and Spironolactone tomorrow.  Carvedilol blocks beta and alpha-1 receptors which results in slowing “the heart rhythm and reduces the force of the heart’s pumping. This lowers blood pressure thus reducing the workload of the heart, which is particularly beneficial in heart failure patients.”  Spironolactone is a diuretic than helps reduce fluid retention.  Enalapril is an ACE inhibitor.  ACE (angiotensin converting enzyme) converts angiotensin-1 into angiotensin-2 which causes constriction of the blood vessels.  As an ACE inhibitor, Enalapril blocks this action thus reducing blood pressure and easing the work load of the heart.

Right about now I want to jump up and cheer and sing and dance and smile, smile, smile.  I am constantly, non-stop blown away by nature.  The complexities, the intricate inter-relations – oh I just swoon and swoon and am enamored of it all! Yes, I hate, hate, ragingly despise that the heart of my sweet girl has been so weakened that it might cost her life.  But I cannot deny the wonder of it all.  The spectacular, pure extravagant beauty of God’s creation.  He made this!

The second component of the plan to get Allistaire’s heart back in a condition sufficient to move forward with transplant, is to delay transplant.  At this point, her transplant is scheduled for March 19th.  This gives very little time for her heart to recover as these medications are not necessarily fast acting.  Before I even talked to Dr. Gardner, I knew this was likely the course we must take.  At the very bottom of the list of downsides of delaying transplant, is it means another month at the very least out her in Seattle.  It has now cost me July, oh July, sweet singing green exuberant July, perhaps Montana’s most perfect month.  The bigger issues with delay are that there is a now a longer window in which unexpected harm can enter; a mere cold could throw everything off.  More significantly, the rash of measles outbreaks which are largely connected to unvaccinated children, could literally be the death of her.  The measles virus can linger for 1-2 hours after someone infected leaves the area.  It hangs in the air, impossible to detect and thus avoid.  In a person with a normal immune system, measles can be awful.  In a child like Allistaire with little to no functioning immune system, it could very easily kill her.

Secondly, there is ever the beast, ever the threat of being devoured by cancer.  Time is a scarce resource in the life of a person battling cancer.  Time is a luxury.  If Allistaire’s cancer is currently suppressed, it means nothing about what may happen in the coming weeks.  Being undetectable in no way means it is nonexistent.  Next Tuesday, 2/17, rather than being transferred to the Bone Marrow Transplant Service as originally planned, she will have a bone marrow aspirate taken.  If we are still in the PICU (if she hasn’t weaned off Milrinone), then the procedure will be done in her room with the ICU attending providing anesthesia.  Otherwise, it will likely be done in the operating room where they have better support than in the procedure room of the Hem/Onc clinic.  For the last 28 days her marrow has not produced one blood cell.  In her last round of chemo, her marrow began to recover after 14 days at zero.  This significant delay is likely a combination of being pounded hard twice in a row by this chemo and her severe, traumatic infection. Looking in her bone marrow will tell the doctors if there is any recovery happening or in the worst case scenario, her marrow is so packed with leukemia that no healthy cells are able to be produced.  I think a packed, cancerous marrow seems unlikely given that in the past two years, whenever even a very small percentage of disease has been present, there have been blasts in her peripheral blood.  Thankfully, there continues to be no evidence of blasts.  Depending on how her marrow looks going forward, the proposed month’s delay in transplant could require more chemo (probably Decitabine), though perhaps she wouldn’t need anything.  As is simply ever the case, we wait.  We wait and see.  We wait.

Every single day feels like an impending death sentence.  Every single day a new number can indicate the tide has turned once again.  This morning’s BNP, which they are only looking at twice a week now, was substantially increased to 1420.  Everyday begins with these numbers.  It’s like being constantly pushed around, shoved hard this way and that, ever a precipice waiting to swallow.  Waiting is hard, really, really hard.  But I have discovered a secret, a mysterious way of God.  He loves to make us wait.  Not because He is cruel, but because He loves, because His aim, His hope for us far supercedes our own.  We dwell on this earthly, temporal plane, wailing in pain, thrashing about, desperate for things to work out as we so desperately hope.  We have set our eye on our desire immediately before us.  But God…He is over all, under and around, above and below and on all sides.  His view engulfs our little view.  He waits.  He waits with us.  He restrains His hand because He is holding back the tide to make room, to provide space in which we are invited to face Him, to wrestle, to grab hold of His extended, merciful gentle, powerful, loving hand.  He allows the tension of waiting because it is often in this electrified static that we have most bountiful opportunity to turn to His voice, to seek His face.  This is His aim.  This is His yearning, His craving, His unbridled passion, to draw us to Himself.  It is not that He is unmoved and cold toward my bleeding heart.  It is not that He is powerless to change my circumstances, in a flash, in the blink of an eye.  It is that He has clarity of vision.  He declares that life comes solely, only, directly from being bound to Him.  Love is patient.  Translated in the King James, it says love is long-suffering.  This is the very first descriptor of love.  God is love.  God is long-suffering.  He suffers with us in our sufferings.  He endures with us.  When at last will we come to the end of ourselves and see that He offers us life.  Life abundant.  Life eternal.

Father, thank you for drawing out this suffering, for expanding its parameters.  For You have filled this space with your bounty, your halting beauty, with light unearthly.  I swoon as I fix my eyes on You.  You have patiently walked by my side and I rejoice to know that no matter the days ahead, you will never leave me nor forsake me.  You satiate and I come running for more, more of you Lord!  I come weeping, weeping, calling out for mercy.  Mercy Lord!!!

If by any chance your heart breaks knowing how broken Allistaire’s heart is from all of her harsh treatment…if you wish for some better option for her…if you wish her cancer could be cured without destroying her…if you wish there was just a way to put an end to cancer, to obliterate it…

There is something you can do.  When we join our resources together, we really CAN make a difference in the options available to children like Allistaire.   By joining me in raising funds for cancer research at Fred Hutchinson Cancer Research Center, you are furthering, accelerating the chances for life for kids and folks like yourself, like your mom, your brother.

Click HERE to join me in donating to cancer research as I participate in Obliteride again this summer.

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Feb4

Get STOKED!

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The above three pictures are of Allistaire on February 4th in 2012, 2013 and 2014.  Each of the last 4 February 4ths she has either been in treatment or about to begin again due to relapse.

Today is World Cancer Day.  Today is a day to take note, to lift up your chin and force yourself to look cancer in the eye.  Because let’s be real, most of the time we want to look the other way and pretend we don’t see that dark shadow looming in our periphery.  Look around at your life – how many of those you love have been touched by cancer?  And I don’t mean “touch” in the desirable sense.  Maybe impaled, scarred, lacerated, bruised, wounded, ravaged.  Maybe these are better words to describe cancer’s impact. Yes, cancer has also brought a lot of good in my life, but I will not for a second pretend that I wish cancer on anyone.  How can I not desperately want cancer to be stopped, forever?!  And it’s not just Allistaire.  It’s my sister-in-law who didn’t have her mom there when her sons were born.  It’s my friend Megan who lost her baby because of her own cancer.  It’s my aunt who had to make the hard choice to have a mastectomy because her mom died of breast cancer.  It’s my cousin who has decide whether or not she must cut out parts of her body because she bares a gene known to show high risk for breast cancer.  It’s my friends’ sad, weary eyes that long to have their child back.

Today I bring you videos to tell the story.  The first was made by our friend Abi who was in treatment with Allistaire, also with AML.  I love this video because it is a window into our world.  I love this video because it’s full of faces dear to us.  But what I can’t ignore is how many faces are now gone, dead.  Cancer does not leave one unscathed.  If you make it out alive, one almost always bears the scars and damage of treatment.  The second is of a little 3 year old boy named Ben who died of neuroblastoma.  Out of the deep well of their grief, his parents started the Ben Towne Foundation which is linked to Seattle Children’s Research.  The goal is to find cures for cancer that do not rely on chemotherapy and radiation and to accelerate research to get to real patients who are desperate for options now.  The next three videos provide a window into one of the most thrilling and promising areas of research today – the idea that researchers can genetically modify our most powerful fighting cells, T-cells, to identify and destroy our individual cancer cells.  Lastly, to lift your spirits there is the “Stronger,” video filmed on the cancer unit at Seattle Children’s while Allistaire was in treatment the first go around.  Life is worth fighting for.  These kids are worth fighting for.  Your mom and brother are worth fighting for.

If you’d like to tangibly support cancer research, I invite you to support me in Obliteride which is a fundraiser bike ride for Fred Hutchinson Cancer Research Center.  Every dollar you give goes directly to cancer research.  There are a number of very worthy places to give your money to support cancer research.  I have chosen to focus my efforts to support research at Fred Hutch because Allistaire’s life has been directly sustained by their research through the clinical trials that have yielded her last transplant and holds the promise for her cure with this next transplant and subsequent T-cell trial.

Click HERE if you’d like to support me in OBLITERIDE – accelerate the cure and put an end to cancer for good!

Look At Me Now

The Story of Ben Towne

T-Cell Therapy Explained

Fighting Fire with Fire

The Mighty T

What Doesn’t Kill You Makes You Stronger

 

 

Feb3

Numbers

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IMG_2733This morning I spent nearly an hour on the phone with Lisa Getzendaner, the Unrelated Donor Coordinator, getting a lot of information on the road ahead.  I am daunted by the incredible number of details that all have to fall in place.  It really feels like we’re on a bullet train, speeding toward our destination of transplant, with a frightening number of steel gates currently down across the rails.  They may open.  They probably will.  Lisa has twenty years of experience with this work and I have confidence in her abilities to coordinate the massive endeavor before us.  The gates may open, but the thing is, every single gate must open to get where we so desperately need to go.

Allistaire came to the ICU because of a severe infection in her gut.  A few comments in recent days have opened my eyes to just how serious her typhlitis was.  On our behalf, the resident asked the surgeons if Allistaire could start having some little bits of ice.  When she brought back the answer that she could indeed, she also brought news that the surgeons were surprised that Allistaire was able to make it through this gut infection without needing surgery.  I knew that for them to operate on her would have been extremely dangerous given her complete lack of white blood cells, so to hear that they really thought she would need surgery impressed upon me the danger she was in.  When I relayed this perspective to Dr. Gardner, she stopped and looking me in the eye, said that the way Allistaire’s colon looked on the first CT was the worst she’s ever seen.  She sure did a good job of not letting on about how precarious her condition was.  Apparently, had her bowel perforated, a likely uncontrollable infection would ensue.  This is in fact how my grandmother, Lillian, died.  She died fast.  I sat in a plane on the tarmac in Atlanta, trying to get to her, when she died.  I am now much more aware how optimistic my assumption was that she would make it through this, that she would be fine.  Thank you Father that you preserved her life.  Thank you to each of those donors who took a serious chunk of their time to donate their granulocytes.  Thank you amazing team of doctors who so expertly and rapidly diagnosed the likely problem and initiated an aggressive and effective plan to support her little defenseless body through this sepsis shock and resulting tremendous insult on her heart.

Now that her typhlitis is so wonderfully on the mend, Allistaire’s primary issue remains her heart.  Dr. Gardner talked to Dr. Bleakley, the transplant doctor, who said that her ejection fraction must be 45 or higher in order to be approved for the transplant protocol we so desperately hope for.  Since her last echo that showed an ejection fraction of 23, the team has continued to carefully monitor her fluid intake and output, adjusting everything from the concentration of meds and TPN, to giving and timing lasix to pull of more fluid.  They are doing everything in their ability to ease the burden on her heart.  As Lisa said, if her heart function doesn’t improve enough, this “could be a show stopper.”  She has continued on Milrinone.  Thankfully, her BNP (a measurement of heart distress) has been trending downward and was 583 this morning.  A normal BNP falls in the range of 0-90 and hers started at 2350 from the first time they checked it.  Additionally, her SVO2, which is the level of oxygen in her blood that returns to her heart after circulating through the body, has risen to 80 which the attending doctor told me this morning is perfect.  “Perfect,” I have not heard that word used describe almost anything with Allistaire lately.

The general plan is to keep Allistaire on the Milrinone until her blood counts have recovered in order to provide optimal blood profusion to her gut, thus aiding healing.  We will also wait until count recovery (ANC of 200) before allowing anything to go into her stomach.  It will be a process to get her gut working and her eating well enough to provide her the necessary calories and thus to come off the TPN.  It is very possible she will get a feeding tube given how small her stomach will have shrunk.  The feeding tube would allow constant low level food.  This is a bit of a bummer for me as we have managed to keep her off a feeding tube since she was diagnosed.  Oh well, something else new to learn.  Her blood counts remain in decline.  Today she is getting platelets (which she seems to need every 2-3 days) and red blood.  Her white blood count remains zero.  Today is the 17th day of zero white blood cells despite getting daily GCSF shots to stimulate her marrow to start producing cells again.  I sure hope her marrow perks up soon because so much of her healing depends on her ability to heal up with the white blood cells.

Regardless of these challenges to overcome, planning out the details and timing of her transplant must proceed.  Allistaire will be transferred to the BMT (Bone Marrow Transplant) service on February 17th.  I will have an Arrival Conference, the next day on the 18th.  The purpose of the Arrival Conference is to review the process before us, what we know about Allistaire and what testing still needs to be completed. Then for the next two weeks, a great deal of testing and evaluation will take place to determine if Allistaire’s disease and overall health is stable enough to move forward with transplant.  She will likely have a bone marrow test February 19th or 20th.  Once all the data collection is complete, there will be a “Data Review Conference,” on March 3rd or 4th.  Assuming everything is in order and we are able to proceed, Allistaire will begin conditioning on March 9th.  This will involve 4 days of TBI (Total Body Irradiation) in which she is sedated and radiated twice each day over at the University of Washington which is just a few miles away.  She will then have five days of chemotherapy which includes 5 days of Fludarabine and two days of Thiotepa.  There will be one day of rest and then the actual transplant, the infusion of the donor cells, is set for Thursday, March 19th.

March 19th feels so far away.  This whole process is taking a month longer than I had ideally hoped.  Yet this may be for the best as it gives Allistaire lots of time to recover.  Her heart, marrow and gut have been severely injured.  This morning the new attending Hem/Onc (Hematology/Oncology) Dr. Hawkins, reiterated that Allistaire’s typhlitis was very bad.  The timing is being dictated in large part by the openings available in the radiation schedule and apparently the T-cell manipulation “takes such a huge amount of resources,” that they can only schedule one per week.  This time will also allow for finalizing details of payment for transplant.  Because both the transplant and the subsequent modified T-cell immunotherapy we hope her to have after transplant are Phase 1 trials, Lisa said she would be “flabbergasted,” if Blue Cross Blue Shield approved them.  It looks like our hope rests with Washington Medicaid and ultimately Social Security Insurance based on the view that Allistaire’s cancer constitutes a disability due to her long time hospitalization.

Behind it all, however, is the promise that should all else fail, Seattle Children’s Hospital Foundation will cover the cost of these trials.  This boggles my mind.  Her last transplant cost $1.1 million.  Sometimes I shudder at what Allistaire’s care has cost.  I look at my one beloved child and know she is not of greater value than each of the thousands of children who die every day in developing countries.  It is not fair that so much is given to her.  The Super Bowl helped add a little perspective.  Thirty seconds of Super Bowl advertisement time costs four million dollars.  That’s about what it has cost to keep Allistaire alive the last 3 years.  She is not worth more than the thousands of children’s lives that could be saved by four million dollars, but she is sure worth more than a measly 30 seconds of TV add time.  What a world.

Another steel gate is in the hands of the donor herself.  She has to consent to both the large volume of cells needed in order to complete the depletion of the naive T-cells for the transplant and for the genetic modification of the T-cells for the trial after transplant.  She has agreed to donate and has agreed to the time frame requested but she still needs to give these specific consents.  There is not one single thing in the universe I can do to impact her decision.  In a stringent effort to in no way coerce the donor, this woman knows absolutely nothing of Allistaire’s condition, her age, the severity of need – nothing.  So many gates barring the road before us.  Most of this post was written yesterday morning long before results from Allistaire’s echo came in.  The day ebbed by at a painfully slow pace.  I felt I could not leave the room because at any moment the cardiologists would come in with news of her heart.  Yesterday the weight of sadness lay heavy.  Day became evening and then night with still no word.  The nurse graciously harassed the resident in hopes she would in turn harass the cardiologist for results.  Corrine, the resident, came in just before 9pm beaming once again.  She made the cardiologist repeat himself several times to be sure she heard the number right.  “The ejection fraction is 45,” she said with nearly uncontainable smile.  FORTY-FIVE??!!!!!  “That is the exact number it has to be for her to move forward with transplant,” I told her with laughing, shocked joy.  God, who are you?  Really who are?  I know your face is just beaming, beaming with joy, with delight to bring us delight.  So what you’re saying, Lord, is that you have her in your hands?  What you’re saying is that this is not hard for you?  We need 45, well here’s 45.  Thank you Lord, Thank you.  I think we were all flabbergasted at that incredibly glorious number.

It has been 19 days since Allistaire was transferred to the ICU, quite a bit longer than I had ever guessed we’d be here.  This is not how I envisioned this round of chemo going.  The funny thing is, just two days after her chemo, when she was detached from her IV pole and it seemed we had three easy weeks ahead of us, I thought, “God, this is what you have for us?  This seems too easy.  We never have it this easy.  Three weeks just to hang out and wait for her counts to come up?  Well, show me what you want this time to look like.”  Two days later she was in the ICU.  Today was a delightful day of progress.  The morning began with the removal of the NG tube in her nose that was used to pull out any stomach contents.  Then through immense protest and fear, the IV in her foot was removed.  These days she is literally terrified if you come near her with anything.  She knows she gets a shot every night and has had many painful experiences in the last two weeks.  Even her bath elicited cries of, “I’m scared, I’m scared.”  It was her first real bath in nearly three weeks and now she smells lovely and her cranium is extra shiny.  Lastly, we changed her dressing.  I am thankful for so much progress and the opportunity to get her up and trying to walk again.

The top picture is one Solveig drew last Tuesday after doing FaceTime with Allistaire and I.  This is Solveig’s view on Allistaire’s world.  It sobers me.  I’ve also included some fun pics from a joyous weekend recently that my two sister-in-laws, Jess and Jo, came out for a visit.  My mother-in-law has been here this weekend, giving me some nice breaks and enjoying time with Allistaire.

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Jan29

This and…

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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

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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.

Jan18

PICU Day 2

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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

Jan9

All together different

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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!

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