Tag Archives: relapsed AML

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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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

Jan22

Worse before Better

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

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

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

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

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

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

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

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

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

I am powerless to stop it.

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

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

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

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

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

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

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

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

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

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

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

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

One of my favorite quotes is this:

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

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

Help me OBLITERATE cancer!!!!

 

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

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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Dec21

Juicy

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IMG_2153Ours is a sanitized fight.  I have only ever seen two insects on the Unit.  One would never know there was weather outside were it not for the horizontal planes of glass affixed to the side of the new building to contrast the vertical slices of blue, orange and green glass.  The rain hits the horizontal slabs, reminding the inside dweller that life does indeed exist out of these confines.  How I treasure those horizontal planes. Ours is a tedious, slow fight of absurd wealth.  The amount of financial, material, technological and human resources brought to fight for Allistaire’s life is staggering.  The light is bright with cheery images on the walls and flashes of exuberant color.  Countless groups come to the hospital and to Ron Don to make the season joyous.  Gifts flow in and in and in.  Everywhere smiling faces, time given to compassionate conversations and cheering us on and rooting for Allistaire.  Everywhere love and support.  Ours is a fight with so many allies.

In anticipation of the movie, “Unbroken,” coming out, I am determined to read the book first.  Much to my chagrin, I have not read much of history and this account of World War II in the Pacific gives me a much enhanced admiration and appreciation for our veterans.  How they faced the horrors common to war is awe-inspiring.  Their fight was poorly financed, poorly equipped and fraught with terrors I cannot begin to grasp – exploding flesh from countless weapons, disease, lack of medical care, sharks, exposure, starvation, torture.  In the same way that we press forward, unwilling to loosen our grip on life, they endured, they strove to hold onto life.  When Allistaire was first diagnosed, I kept thinking, if I was a Haitian mother, I would simply have a dead child.  There would be no fight.  There would simply be a swift succumbing to wretched disease.  So it has been throughout history and so it is in countless stories across this earth at this very moment – fights for life – lives cherished and infinitely valuable.

I went to bed Thursday night with the thought that we have been given SO much.  It is privilege to even have the opportunity to fight alongside Allistaire for her life.  Few have been given so much with which to battle, to persevere.  Who are we to have been so blessed?  The thought of what people must endure on this earth is utterly heartbreaking.  This fight tears constantly at my heart and yet, it is gift.  It could be so very different.  I went to bed more at rest in my spirit.  I woke less and still woke with heightened anticipation, but not terror.  I know the Lord is good and He sees the whole expanse while my sight is limited to a ridiculous degree.  Who am I to say what is best and thus what tomorrow should bring?  I keep handing her over to Him, entrusting her to Him, entrusting my heart and my life to Him.  Do as you please Lord.  You are my whole heart and it swells with longing for you Lord.  I live a dual anticipation – what will come to pass with Allistaire and looking for what the Lord will do.  The question of “why,” has never dominated my thoughts.  The earth and all that is in it is broken and it longs with eager anticipation for the coming of Christ to fulfill all His promises and restore and redeem.  The question of why rests far more on, “Oh Lord, why have you brought this wild, wringing sorrow into my life?  You are not an arbitrary God.  You are a sovereign, beautiful God, so what is your good intention for this road you are having me walk?  Why us, why now, why here?  Who will you put in our path?  How can I walk these halls and these days with face radiant because I HAVE seen you?!”  I don’t believe in accident.  I ask, “why,” because I am on the lookout for the beauty of what the Lord will raise up out of these days.

I actually experienced rest Thursday night and woke Friday once again in prayer, once again asking the Lord to orient my heart to Him – that He would fill my vision.  He has provided so abundantly, will I curse Him now if things do not go as I desire?  He is not a fickle God.  Is He not still the same good God when blasts appear on the lab sheet, when Flow Cytometry reveals an ugly diseased marrow?  I rose from my surprisingly comfortable couch bed to go and find our nurse, Nate, to discover what the Lord gave this day.  Allistaire’s ANC was 230 and there were zero blasts.  This meant a green light for her bone marrow test and ecstatic joy.  My joy was compounded when the doctor who did Allistaire’s bone marrow brought out a bright red, juicy sample of bone marrow to show me and tell me how good things felt in there, how simply good the sample looked.  On Friday they did a bi-lateral biopsy and aspirate, meaning they took sample from both hips in order to ensure sufficient sample given how hard it was to achieve last time due to the fibrosis.  Friday’s sample showed a changed marrow.  So, no blasts, rising ANC, platelets and hematocrit, a juicy fabulous sample of her marrow, lots of energy and no pain – as Dr. Gardner said, we have “guarded optimism.”

After I put Allistaire down Friday for her nap, I went to Ron Don and laid down, intending to read, “Unbroken.”  With lights of the room blazing around me I allowed myself to succumb to sleep.  Three naps in one week – what in the world?  A year could go by and I would not have typically had a nap.  Naps don’t work for me.  But an incredible exhaustion settled me flat on the bed and I dozed.  Perhaps I should be packing clothes for the next few days, but who could know which way the next few days would twist and turn.  I met with Dr. Gardner on Thursday afternoon to discuss three things: what was necessary to move forward with transplant, Denver and discharge.

As Allistaire’s ANC rose over the past week, the team started talking about discharge.  One might think that I should be excited about getting booted from the hospital but in fact “out there,” is a terrifying world I’m not excited to take Allistaire into – especially not now.  The docs pointed out that she has an ANC now which means she has a few lymphocytes (white blood cells) to fight illness.  Yeah, but perfectly healthy people with astronomical ANCs are getting taken down left and right with the flu and various other horrid colds and such, not to mention the Hand, food and mouth disease and Whooping cough going around Montana that could carry itself in the backs of our family.  Now more than ever, it is utterly essential to protect Allistaire from getting sick.  If the chemo has miraculously succeeded in getting her disease knocked down enough to move forward with transplant, then a very precise timing begins where two very separate lives must intersect at exactly the right moment.  The “conditioning,” (chemo and radiation), for transplant is timed in alignment with the donor prepping for the removal of their stem cells.  Cells are living organisms and can only survive so long outside the body and as conditioning begins for Allistaire, the process of permanently destroying her bone marrow has begun.  So, it is imperative that nothing stands in Allistaire’s way of walking each carefully planned step forward to transplant if we are given that option.  Something like RSV (a respiratory virus) is actually fatal in transplant.  She won’t have time to “get over being sick.”  The thought of leaving the hospital means she and I will be trapped alone in our room at Ron Don.  She can’t be in the communal areas and in order to get food I would have to take her with me to the grocery store which is a hot-house of hacking, sick people and kids.  Our best option is to go very early in the morning or late at night when we have a chance at steering clear of the sickos.

Then there was the issue of Denver.  So the bummer news is that the initial findings of the study, in the adult patients anyways, is not too impressive.  Only about 25% had a good response.  As Dr. Tarlock later told me, these aren’t such poor statistics for a single agent and likely this drug will be combined with other therapies in the future to have a far greater effect.  The truth is too, that this trial is Phase One, meaning they are only testing for safety, not efficacy.  The point being, it doesn’t seem worth it to send Allistaire to another state, another hospital, another group of doctors for a drug that isn’t a likely hit for her – unless there are no other options of course.  Dr. Gardner was going to see if she could contact the principal investigator and get a sense of how the pediatric patients were responding, as it could be quite different from in the adults.

By the way, here is yet another plug for pediatric cancer research – did you know that the NCI (National Cancer Institute) only gives 3-4% of its annual budget to funding pediatric cancer research specifically?  Here’s the problem, far fewer children get cancer than adults so it is not in the pharmaceutical companies financial interest to fund research to treat pediatric cancer.  So really, kids only get what eventually might trickle down to them from cancer research in adults which means much more time passes before there are any breakthroughs for kids with cancer.  Additionally, there are a number of cancers that only children get, like neuroblastoma.  Even AML, which is the most common form of adult leukemia, most likely has different origins and characteristics for children than in adults.  When a child is treated for cancer, their body is rapidly growing and every organ from the heart to the liver and brain are being poisoned from the chemotherapy and radiation.  Chemo targets the fast growing cancer cells.  In kids, all the cells are growing far more rapidly than in adults which means their healthy cells are much more vulnerable to the onslaught of chemo and radiation.  When an adult is cured from cancer, their life has been extended by and average of 15 years.  When a child is cured from cancer, their life has been extended by an average of 71 years.  So if the NCI won’t fund pediatric cancer research and the pharmaceutical companies have no incentive to do so, it means the real hope for children with cancer rests with the private donor.  Allistaire has benefited directly and significantly from research at Fred Hutch which treats adults as well and I will continue to root for them and seek to raise money for what they are doing, but there is also a place for giving directly to childhood cancer research.

Okay, back to the most significant issue at hand – what reality will enable Allistaire to move forward with transplant?  What must be true from the results of the bone marrow aspirate and PET/CT?  Dr. Gardner said the most important piece is that the disease in her marrow must be quite low.  The less there is in her marrow, the more likely the transplant is to succeed.  So while the transplant allows the patient to not be in remission, it is still far better that they are.  She said that if the pathologist looks at Allistaire’s sample under the microscope and she is morphological remission which is defined as 5% or less disease (this is the lowest detectable amount with the microscope), then she will be in good shape to move forward with transplant.  Of course there is also the issue of her chloromas (locations of solid leukemia).  One would presume that if the chemo worked in her marrow, it would do the same in the chloromas but apparently tumors have their own micro environments that can allow and promote cancer cell growth that doesn’t take place outside of them.  Only the PET/CT will tell the truth about what’s going on inside, but so far she has not had any pain which is a good sign.  Neither Dr. Gardner nor Dr. Bleakley are super concerned with the chloromas simply because they can be treated with focal radiation if necessary.  Of course this is not optimal as every part of the body that is exposed to radiation is more prone to develop cancer in the future and can be damaged or deformed.  I am sure that an increase in the number or size of the chloromas would require quite a discussion, even if her marrow was in good shape.

I left my time with Dr. Gardner with the plan that she would see what she could find out from Denver, and that if her marrow looked good, we would be discharged from the hospital and if not, we would stay in.  So what’s the point of packing I thought.  I lay in a flattened, utterly still state.  The phone rang with that attention grabbing number ever emblazoned into my brain: (206) 987-2000.  My heart jumps every single time that number shows up on my phone.  Even when all has been well that number gets my heart thumping and dampness of the palm.  It was Dr. Shoeback, the attending doctor at Children’s.  “The pathologist can see no cancer cells in Allistaire’s sample.”  WHAT?  Utter ELATION!!!!!!!!  I could not believe my ears!  Allistaire is in morphological remission and only the possibility of a horrible PET/CT stands in her way of moving forward with transplant.  After the exhausting torture of her last relapse, I could not have imaged this being possible.  But it worked!!!!!!  On Monday we should have results back from Flow Cytometry, but that will only give us a number below 5% and while it would be awesome if it was zero, it doesn’t need to be any less than 5% to be given the open door to transplant.

On Monday at 1:15pm, Allistaire will have her PET/CT scan and by the end of the day, I should hear from Dr. Gardner with the results.  Of course a plan can’t really be formulated until all the data is in, but the AML docs and Dr. Gardner are discussing with Dr. Bleakley what would be the best plan for “bridge chemo.”  It is necessary to have some form of treatment between the end of this round of chemo and conditioning chemo because you ethically can’t get the donor moving forward with their steps until you know you really can have a transplant.  By the way, while Allistaire has no U.S. donor, Dr. Bleakley is trying her best to exhaust all possible options for Allistaire.  She is in contact with the German version of the FDA to get approval on their end to get a consent process with the overseas donor to manipulate the T-cells.  I think the idea is that this is an additional step taken with the donor’s cells and because the donor’s cells are technically part of the donor or owned by the donor, they have to give consent.  If you want a super interesting read on this topic, check out, “The Immortal Life of Henrietta Lacks.”  If approval is given through the German system, Dr. Bleakley can then seek out approval from the FDA.  Even if all this approval goes through, there is still the issue of the timing and age of the cells given the additional time that would be required to process the cells in Seattle.  If the donor is from a “major center,” in the German system, this increases the likelihood that the quality and timing of the cells could work.  Dr. Bleakley says that ultimately it will be up for Sten and I to decide what we want to do.  It’s a gamble really.  The conditioning chemo for the trial transplant and the standard transplant are different.  The donor cells could arrive from overseas and it be determined that they are not in good enough condition to be processed and take out the naive T-cells.  In this case only the minimal processing that always occurs with donor cells would take place and Allistaire would get the transfusion of donor cells as is.  There is a lot to consider, if even we end up having that choice to make.  In the mean time, Allistaire will need some chemo to keep the bad guys down.  This could either be another round of the DMEC (Decitabine, Mitoxantrone, Etoposide, Cytarabine) which she just had – in the clinical trial it has been given in one to three courses.  Because her heart remains in good shape, this would be an option.  Additionally, Decitabine can become even more effective over multiple courses in the same way that Azacitadine does, which she had post-transplant last time.  Another option would be Decitabine alone.  Lots of brainstorming amongst the docs is necessary.

I can hardly believe it.  I can hardly take it in.  I cannot stop smiling!!!!!  My girl has been given one more open door.  Every day of this journey feels like walking around a blind corner.  There is absolutely no way to predict what the next day will bring.  Often the entire trajectory of your world can shift from morning to night.  The wind blows, the seas rage and toss and yet the north star is unmoving.  I keep my eyes fixed on Christ, my one sure hold.  Tomorrow morning we rise to a new day.  I have no idea what will be known when I lay down to sleep Monday night.  What if this whole thing, this crazy journey is just so that I would meet Debbie today in the rug aisle in Target?  What if all these years of highs and dark lows are so that I could tell her, Debbie, my hope is in God!  My hope is in God!  Not that He will save Allistaire, though I have joyous confidence that He can overcome the most hideous of cancer cells, but that this whole crazy life and world are His and He will accomplish the beauty of His will which is more magnificent and glorious than we could ever, ever imagine.  His promises are sure footings.  Debbie, your hope can be in God, in Christ the Savior who was born to bring peace and goodwill to all men!  Oh let the whole earth, the whole wondrous earth sing His praises, may every cell of my flesh rise up and strain to declare His love, His beauty, His overcoming power to redeem and raise the dead, the dead heart, the dead flesh.  He is coming, He is coming and I am on the lookout!

(The top picture is of the vial of her bone marrow aspirate and the the tiny bit of bone is the biopsy.  I’ve included at the end a number of pics from three years ago – always wild to see some perspective on our journey)IMG_2149 IMG_2154 IMG_2155 IMG_2159 IMG_2160 IMG_2161 IMG_2164 IMG_2173 IMG_2181Allistaire with Papa sisters and cousins 1 Christmas Family Cancer Fears Me DSCN4804 DSCN4805 DSCN4806

Dec18

Pounding Anticipation

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IMG_2134 IMG_2139Growing up, as the days grew near to Christmas, my brother, Patrick, and I would be wild with excitement.  In the last few days preceding Christmas, I would abandon my room and take up post on his top bunk bed, going to sleep at night dreamily gazing at fuzzy orbs of red, green, yellow and blue reflecting against the ceiling from the Christmas lights lining the roof outside.  On Christmas Eve we were so giddy we could hardly fall asleep and seemed to wake up repeatedly only to slump back to bed once we realized it was still the middle of the night.  In the final hours, before the time we had negotiated with our parents, we would lay on the floor, chins in hand, staring at the clock with the red digital numbers and faux wood grain siding.  Our joy and anticipation of what lay under the Christmas tree downstairs was uncontainable.  We took great care to contemplate all the joyous possibilities.

The last several mornings I wake with a shocking pounding of my heart.  I check my phone, it’s 4:36am, it’s 3:56am.  I lay there with eyes wide and the disturbing sensation of a thump in my chest that seems too palpable.  I tell myself to go back to sleep, it’s a long time before 6am when I will rise and that will be the time to get her labs.  Even as I lay down at night, I know the morning is coming.  There is some clicking sound that keeps waking me.  I am convinced the nurse is in the room with the familiar click followed by the sound of the blood pressure cuff expanding telling me 6am vitals are underway.  It’s the time of reckoning.  I lay utterly still, ears alert, straining but hear no more sounds.  It’s just the refrigerator.  It’s not even close to 6am.  I force myself to go back to sleep.  My bladder demands I wake and as I round the corner into the bathroom I scan for a white sheet of paper – maybe the nurse printed labs early and it’s lying there waiting for me.

Allistaire’s room is decked out in Christmas joy – tinsel, ornaments, pink tree and battery operated Christmas lights – some cheerily blinking their bright colors, others transforming slowly from one array of colors to another.  But just underneath that holiday cheer, underneath the sparkle of snowman tummies and reindeer hanging from the IV pole, the anticipation courses in an altogether different direction.  While it seems all the world around us scurries about in final preparations for the biggest holiday of the year, our life ebbs one single day at a time, one lab draw to another.  One 6am to the next 6am.  Christmas is a blank day on the calendar.  It lies in an altogether different realm.  Christmas feels more significantly like next Thursday and Thursday dwells on the other side of Monday.

Every day in rounds the resident doctor repeats the same line, “awaiting count recovery.”  That is our plan of action.  We wait.  Here we are on the 30th day of this round and Allistaire’s ANC (Absolute Neutrophil Count) has been on the rise.  Her marrow is recovering.  Yesterday it was 157 and today it was 171.  It needs to be 200 in order to have a bone marrow test and in anticipation of this, she is scheduled for her bone marrow tomorrow morning at 11:15.  This time they will take samples from both hips in order to ensure a sufficient sample.  In the past her marrow has been so fibrotic, it has been difficult to even get enough aspirate to test.  They will also be giving her intrathecal chemo which is chemo placed directly into the spinal fluid.

There are essentially four tests by which her cancer could reveal itself – in her peripheral blood in the form of blasts which would be seen in her labs, in her bone marrow as seen under the microscope by a pathologist and/or through Flow Cytometry, and/or in the PET/CT scan which is scheduled for 8am on Monday.  Each day presents another opportunity for the unseen to become seen.  Each day I scan down the long list of items quantified, hastily pursuing the one number that matters above all else – Absolute Blast Count.  Our whole life feels balanced on these tiny pinpricks of numbers, these infinitesimal objects that determine the course of her life.

It’s finally 5:45 am and I reach over to turn off my alarm.  I do not spring from bed.  I do not slowly rise.  I lay there, still, looking for the face of Christ, calling out to Him.  I survey what I know to be true about Him.  I consider His Word.  I reflect on how He has cared for me before.  I fix my heart on His promises.  It is becoming less hard to yield.  But the thought of losing Allistaire has lost none of its sting, its slice, its atom crushing force.  My heart pounds and I gather on my armor, knowing I may be run through with the blade, but miraculously, I am incapable of utter defeat.  I carry the quiet power within me, conscious of the ripping pain that can still penetrate.  My feet hit the cold linoleum floor and the day has begun, but the battle started while I lay still.

So much bounty.  “You’re on the VIP mailing list Jai,” Marie, the Unit Coordinator, tells me.  “What does that mean?”  “Oh, you get so much mail, more than anyone else.”  The packages pile up on the floor.  The envelopes keep coming filled with words of compassion, love, delight, faithful prayers and tangible helps.  Every need we’ve had has been met, not just sufficiently, but abundantly.

Allistaire herself, is also doing remarkably well!  As of today, she has finished her 14 day course of the antibiotic, Cefepime and ethanol locks on her lines have been discontinued.  This alone means a far quieter night that now only requires vitals and labs.  Because she is such a rock star at taking all her meds by mouth and drinking her required 44 ounces a day, she has also been taken off IV fluids and is completely detached from her IV pole.  What glorious freedom this is!  Allistaire’s appetite continues to improve and she gained .3kg over her intake weight.  Perhaps most phenomenal are the results of her Echocardiogram and EKG.  All her cardiac function is doing excellent, which is especially amazing in light of the chemo she had, mitoxantrone/blue thunder, which is well-known to be hard on the heart.  Her ejection fraction prior to this round of chemo was 65, now it is 63.  Her shortening fraction started at 33 and is now 32.  I am in awe of how well her heart has held up thus far!  God has not stopped pouring, and I mean literally, pouring out His blessings on us!  Allistaire goes throughout her day with silliness and joy, ever in hopes of playing tricks on the staff.  She rides her bike around the Unit unfettered, pink, yellow and blue butterfly wings aloft behind her, vampire teeth firmly clamped in her mouth and my constant exhortations, “Slow down Allistaire!”

I think it is this radical contrast of such a thriving, vibrant being and the real possibility of the life being drained from her by cancer that causes such dissonance in my heart.  How can the two possibly coexist?  But this is what I face each morning with labs, as I wait for each test result – the beauty of her bright smiling eyes with the knowledge that Beth has gone home without her son after just shy of a year in the hospital and three bone marrow transplants.  The living can die.  We are not exempt.  God does not promise to open the doors before us.

Allistaire and I watched a Disney movie about a grizzly bear and her two cubs today.  We just decided we liked it so much, we might watch it together again tomorrow and this time it won’t be so scary because we know the outcome of the story, the big mean male grizzly does not find the sweet little cub and tear him to pieces.  The story has a happy ending.  I dwell within my story and I don’t know all the twists and turns of the plot, but my Father in Heaven has told me the ultimate outcome.  It has a happy ending, at least, in the very end it does.  Sometimes the anticipation caused by ever balancing on a nimble edge over a cliff is exhausting and all-consuming.  I may fall, I may not.  It is time to get to bed and face another set of labs in a few short hours.  I may fall, but I won’t be dashed to pieces.  My anchor is in the Lord.IMG_2050 IMG_2052 IMG_2057 IMG_2059 IMG_2068 IMG_2072 IMG_2075 IMG_2079 IMG_2088 IMG_2090 IMG_2095 IMG_2106 IMG_2115 IMG_2116 IMG_2120 IMG_2123 IMG_2133 IMG_2143

 

Dec14

Black Waves

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IMG_2005“To swim in the ocean, you dive through the waves as they come at you,” my friend Matt tells me as he points to the horizon and the relentless pounding of ancient force.

I do my best to dive through the first wave, but I don’t quite make it and the curling power forces me down.  My body is tumbling in the cold water.  I try to get my footing on the sand that gives way.  Breath.  Breath.  I see the next one coming and before I can recover, it slams me down again.  The waves kept coming, utterly oblivious to my plight.  This must be what it feels like to be drowning, but that won’t happen.  It can’t happen, right?  After three or four waves I finally scrambled out of the pull of the waves, tired and shaken on the sand.

Matt is dead.  The incomprehensible happened.  And it’s happened so many times since.

My friend and her daughter are back on the Unit.  She tells me how little there is left to try, how she must hang on for a clinical trial she hopes to get on, but it may not be until January.  She walks slow in the hall, bearing up under the pain that seems to be everywhere.  It has not mattered that her disease gave her an over 80% chance at survival.  Her she is.

I saw a dad I know the other day.  He and his daughter had driven hours to come visit one of her friends whose cancer keeps returning in the lungs, a bone cancer.  This is how it goes and when it does, it almost always spells the end, eventually.  He tells me of some of her other friends, this one at home on hospice to the north and the other to the south.

Hospice.  “They went home on hospice.”  Has a word ever cut so brutally.  It is like a dirty, ragged knife, cutting slow but deep.  It is tearing through your gut and it is so horridly slow but you can do nothing to stop its course.

I look at my friend and her daughter and think, here we are, we have at last become, “those people.”  Those, that even within this small harsh world, have become “other.”  We are the lepers.  We are the stories to steer clear of.  We are the living, breathing, shuffling statistics we have all sought to disregard.

I debated when my alarm went off this morning whether or not to give into the desire for sleep, but rather determined to get up and climb up and down the overly warm stairwell as some attempt at excercise.  The nurse came in as expected for 6 am vitals and I asked her to see Allistaire’s labs.

“They’re all normal,” she said, “but the ANC isn’t back yet.”

The sickle came swift and sliced through my legs and left me collapsed.

“That means there are blasts,” I stammer and my eyes scan as she gets to the right page on her computer and there it is, everything is back now.

Absolute Blast Count: 10; Absolute Neutrophil Count: 0

Her ANC had been at zero for sixteen days and then on Friday it peeked up at 8.  I was so relieved to see no blasts.  Yesterday it was 20 with no blasts.  Every day in rounds the resident repeats the same refrain, “awaiting count recovery.”  That is what we’re here for.  Get the chemo and then wait and wait and wait to see if it worked.

It hasn’t worked.  The chemo has failed to control her disease, much less to suppress it to get into a position for transplant.  It only takes the sighting of those few horrific blasts to know there will be no transplant next and what’s next requires a move to Denver.  I imagine we will still have to wait until her ANC gets up to 200 to do the bone marrow test.  You have to have enough recovery of the marrow to get a clearer idea of the amount of disease.  What is clear is that her cancer is recovering along with some healthy cells.

I should also update the news that there is no match for a donor in the United States.  Not one.  She needed a U.S. donor to be able to get the Naive T-Cell depleted transplant that Dr. Bleakley is overseeing.  It is just baffling and hard to imagine that in the whole of the United States there is not one person who can offer Allistaire the cells she would need for another chance at life.  Please, if you are not on the registry, ask yourself why not?  How often are you given a chance to save someone’s life?  This is not abstract.  This is as tangible as it gets!  You haven’t had the time yet to go online to check it out?  You’re afraid of the pain?  Please, are these reasons to deprive someone the chance at life?  So many have said they love Allistaire, they are praying for Allistaire.  Is any child less worthy of life?  I asked Dr. Bleakley if they could do another search for a U.S. donor if we ended up having more time before transplant and she said it was a matter of very diminishing returns.  But you know what?  It only takes one person to be a match, ONE.  You could be that one person.  Click HERE to sign up to be on the bone marrow registry.  And please pass on this appeal to as many as you can.

The last two days have been pretty wonderful with Allistaire.  I wish you could see her bright face and mischievous twinkle in her eyes.  “You distract him,” she hoarsely whispers.  “Connor, I think there may be dragons outside Allistaire’s room.  Can you go keep a look out?”  Connor, the CNA, joyfully plays along, and Allistaire speeds with IV pole in hand from bathroom to bed and throws the pale blue covers over her head.  I cry out, “Oh Connor, where is Allistaire?  I fear she has been eaten by the dragons.”  The blankets wiggle and giggle with her uncontrolled delight.  She wants to play this game over and over.  Her appetite has been better and eating has become much less of a struggle.  It still takes about two hours per meal but at least now she is getting in a reasonable amount at most meals.  Her weight only dropped point two kilograms over the week that she didn’t eat much.  She has loved having Betsy, the music therapist come by and sing songs together and play instruments.  Two sweet young ladies from the ministry of University Presbyterian Church, Side-By-Side, came and played with her Friday afternoon.  She absolutely loved having them and was desperate to have them stay longer.  They promised to be back in seven days.

We’ve gotten into a little routine she loves.  When I leave either in the morning or at her nap time, she whispers with glee, “you go over there by the curtain and I will tell you things.”  So I obey and go stand at attention by the curtain.  “I love you and I hope you have a good time exercising (insert whatever activity I’m off to do), and I’ll see you after my nap.”  Then she blows me kisses and I respond in turn, “Allistaire, I love you, I hope you sleep well, and I’ll see you when you wake up.”  I obnoxiously blow millions of kisses.  Her eyes, so bright with happiness and her sweet, little voice tilting up and down with her words.

No matter how my times I have bent my knee before the Lord, submitting to whatever His will might be in her life, in my life, in our lives, I don’t know any better how to let her go.  I have made no progress in my ability to know how to let her go.  My whole being soars and stretches with love for her.  This little girl becomes only more and more precious to me.  And I just can’t comprehend someone so wondrously alive being dead.  She is no different from millions of other children who have been lost.  She is no more valuable than any other human, any other mom, sister, dad, grandparent that has died.  But these millions upon millions of deaths do nothing to diminish the loss of her.  If she dies, it will take all of her.  She will be gone from this life.  I see all that we’ve been given, these years with her, even these three whole years since she first became sick.  I see how fortunate we’ve been to live in this time and in this place, we have been given so, so much.  I see the overwhelming kindness of so many people, both that I know and those we’ve never met.  I look at the Lord and I know I will see her again.  I believe in the good that will come.  But here and now, her loss would be loss. Her gone would leave a gaping hole.  This life will no longer contain that voice, those bright eyes, that laugh.

I know I must go on, putting one foot in front of the other, going through each step that must be taken.  I am asking God to hold me up.  I am asking God to give me moments of joy in this midst of these crashing black waves.  I will keep my face to Him, but it is a face streaming with tears, agony of heart, gasping of breath.  Lead me by your hand down this road Oh Lord.  I cling to you.  I may even need you to carry me, I don’t know that I can will my feet to move forward into that darkness.

I cling to your promise.  “I am in that dark place, Jai.  You will be found my me.  I am the God that turns darkness into light.  I am the redeemer God.”IMG_1992