Tag Archives: heart failure

Mar29

Quiver

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IMG_3065I can’t tell you what it’s like to lose your child.  I simply don’t know.  But I can tell you what it’s like to walk through this world with your child’s life ever, ever hanging by a thread, ever threatened, the wolves snarling, the glint of teeth.  I see the girl in her soccer uniform with her mom and little sister as I descend the escalator in Target.  My legs weak and muscles quiver, drowning in some sort of chemical sorrow, trying to catch their breath.  Such beautiful normal life.  People out living their extraordinary, ordinary lives and I feel perpetually trapped on the other side of a glass wall.  The little blonde haired girl sucking her thumb in the coffee shop, wearing the same tights I once bought for Allistaire, tights not too small to wear, just irrelevant in the world of the hospital.  I walk through the clothing section for little girls, barbs pierce my flesh.  I buy her clothes because clothes mean you are alive, you have a life.  But I don’t buy a size up with a future in mind, even clothes that acknowledge the change of season only serve to declare her plight, a life lived inside where temperatures never change, wind never blows nor rain falls.  I see people out in their yards raking, mowing, digging, flowers bursting and I envy, I envy.  I long to be on knees, hands in dirt, pulling weeds, clearing the dead debris of winter and sinking flowers into soil.  My life is lived in strange parallel, at moments seeming to cross over but ever tied to a rope threatening to pull me down, pull me under.

I have routines that on the surface create the ruse that there is normalcy, but these days are only normal because they repeat without seeming end.  Weekends are strangely hard.  They are a gift because they are a chance to be out of the hospital while my parents stay with Allistaire and I get two nights of unbroken sleep.  But they are spent alone.  Alone I go to the movie.  Alone I eat at a restaurant.  And I have chosen this.  There are many who would join me but I have preferred to be alone because I so weary of the constant barrage of human interaction every day, all day and night at the hospital.  I am desperate to flee from it and yet, I don’t want to be alone.  I want to be with my family.  I want to be doing ordinary things like waking up together in the morning, making breakfast, doing laundry, going to the grocery store, sitting in my chair by the window, sweeping up the incessant needles from the fir tree, making dinner.  But I am cut off from these ordinary pleasures and so I pass through spaces, silent, appearing to be apart of the world of the living, but like some agonizing spirit, dwelling in the space between.

My mind feels gripped in a vice, pressure now intensifying, now releasing but ever-present.  The numbers are relentless, my brain analyzing them ceaselessly, turning them over this way and that, holding them next to sets of numbers from other days, trying, trying to make sense of it.  What am I seeing?  What do they tell me?  I look at her and I see bright thriving jubilant life that could and would flourish all the more if we could just escape the grip of this place.  We have officially passed the mark of 365 days lived within this hospital, one year of her life spent within the confines of these walls.  Twenty percent of her life has been lived constrained to Seattle Children’s Hospital.  Sixty-five percent of her life has been spent fighting for her very life.  I weary.  Oh how I weary and yearn with panting desperation at times to just get away, get out, flee.  But there is no escaping, there is no breaking over the walls in the night and running and running until you can’t anymore.  The only way out is to be released.

Last week the doctors had a planning meeting.  On that day, Allistaire’s BNP was a beautiful wee little 500 or so and her kidney function numbers, her BUN and creatinine were gorgeous, proclaiming happy kidneys profuse with blood.  Most of last week was an ongoing struggle with her being nauseous, throwing up consistently once or twice a day.  Sometimes she would just be nauseous in the morning and throw up once, having no issues the rest of the day.  Some days she would eat well, getting in all her needed calories and fluid, just to throw up ten minutes after going to bed.  I felt under tremendous pressure, knowing that nausea and lack of appetite can be signs of heart failure.  Helping her get in the necessary calories and fluids is totally my realm of responsibility and I was desperate for her to demonstrate that she could do it.  Yet each time she cried out in terror of impending throw up, clutching the little gray basin in front of her chest and out would come hours of effort, I felt such overwhelming defeat.  Each time she threw up it meant we were behind on calories, behind on fluids and with far less time to get them in before the end of the day.  The moment she finished throwing up I had to put milk or juice and food in front of her again, pushing, pushing her to consume.

There are so many layers of reasons she would struggle to eat.  Three years of chemotherapy has created plenty of negative associations with eating.  Incredible gut pain from typhlitus has made her on much higher alert in terms of stomach pain.  Her entire system of stomach and intestines were at complete rest for nearly two months during which time she was on three types of hard-core broad spectrum antibiotics.  Everything is slow and any pain, whether from gas, need to burp or nausea all gets mixed up in her mind and triggers her to throw up.  Her gag reflex has intensified dramatically.  It has all led to an all day long effort to get in food and drink with repeated defeats.  I don’t know if there is anything more core for a mother than the need to feed her child.  I feel it throughout my flesh and far beyond the workings of my mind, this desperate need to provide her nourishment and all the while fear of how it will be interpreted by the doctors.  Thankfully, both the PICU attending and our ICU Continuity Care doctor, affirmed that Allistaire has many reasons to struggle with eating and that they were not overly concerned about it being directly tied to her heart function, given how encouraging she looked clinically and with all her labs.  I finally felt some relief, having been given permission by the doctors to let down my guard a little.

I was encouraged to, “look at the trajectory.”  By all other measures she was doing great.  Her BNP was bouncing around in the four to five hundreds and all her other labs were good, especially once they transitioned her from IV Lasix to PO (“Per Os” in latin which means “by mouth”).  The thing is though, a slight bump of the numbers in the wrong direction sets you on high alert, the ringing fear rising.  Yeah it’s a little blip but it could be the beginning of a frightful trend.  And so it has been, her BNP slowly rising from that beautiful low, each day a little higher and today 861.  Her BUN too slowly rising from a happy 21 to 31 today.  But the mind bending thing is, she just looks so great.  She looks great!  She’s happy, she is playful and less nauseous, rarely throwing up now.  Her average heart rate has gone up but at least some of this is due to the fact that she is far more active these days.  Ashlei, our social worker, saw her Friday after a week and a half gone, and exclaimed that she just looks so good, far more her normal self.  It’s true, her cheeks are pink and she has a delightfulness to her being.  It is a hard contrast to these numbers trending in the wrong direction.

Are we about to be dragged down again under those dark suffocating waves?  Was this just some fantastic lull, a beautiful blip?  May it not be.  Her echocardiogram is scheduled for tomorrow morning.  I know to expect her BNP to be high tomorrow as it has been each time she gets a red blood transfusion, which she got this morning.  We’ll see what her BUN and creatinine are.  I feel terror, terror.  What will I know tomorrow night?  How will the world tilt and spin in these next 24 hours?  I don’t know what to wear.  It sounds absolutely absurd, but it’s supposed to be sunny and 66 degrees but some how in some stupid way I feel distressed to wear cheery clothes that may be paired with weary tear strewn face.  I thought we might order Pagliacci’s for dinner tomorrow.  It’s always fitting, whether in sorrow or rejoicing, but which will it be tomorrow?

For so long I have been tossed this way and that, flesh shuddering against stone walls, the force bruising already bruised body again and again.  I am battered, tender and any new hit hurts deep and hurts sharp.  Like Allistaire’s chemo weary heart, so deeply wounded from relentless assault, so is my heart, my being thrown against the rocks so many times.  Am I overly dramatic?  Perhaps.  Am I asking for pity?  No.  But I find the tears so close to the surface on so many days.  It feels easier to quarantine my life to that of the hospital world rather than having to confront the extravagance of other’s ordinary life, a life for which I am ravenous.  I had allowed my mind to wander with hope for escape.  I told Allistaire there were daffodils and tulips blooming outside.  I have yearned with a keen intensity for her to be outside.  I am desperate to see her out on a playground with shoes on, not slippers.  The hoped for plan was that Allistaire would be off of Milrinone completely sometime this week.  She has weaned down .1 every three days or so and is now, as of Friday afternoon, at .1.  All she had to do was finish these last few steps, spend 24 hours in the PICU with no Milrinone and then transition upstairs to the cancer unit for a week for monitoring and getting her at the right dose on a few meds.  Then, then we would be free.  We would be released like birds too long in a small cage.  I could taste the beautiful sweet hope and see its translucent yellow ethereal light.

Like some triggered trap snapped closed, these numbers have shut out such lovely hopes.  Perhaps I should not have hoped.  Perhaps I should have kept those black blinders on my eyes, a beast of burden commanded to look only at the path immediately before you, be not distracted, keep your view small.  I have not figured out how to make this hurt less.  The only solution seems to be to be less tied to her, to loosen my grip and gain some distance, watching as if a movie, a story of some other life.  But I can not.  I can not.  I can not want less to see her live.  And even as I feel such ripping soaring hope for her to live, I fear too what sort of life she might have before her.  I want her to live that she might be ravaged all over again by transplant.  Who might she be on the other side of that?  I see the ravages other children have endured to keep their life, ravages that keep devouring more.  But wouldn’t I want a broken Allistaire rather than no Allistaire?  I would take her broken in a heart beat over having her no more.  But is this just my selfish wish, for my own good?  I look at her bright, cheerful face, her endless pleas to play hide-and-seek, her wiggly joy and I think, no, it is not just my wish.  How could I walk away from this bright spark?  How could I let up for one moment attempting to keep that flame fueled with life?

I am lulled by the cycle repeated over and over and yet shocked that it is once again Sunday afternoon and I am preparing for another week in the hospital.  Today marks her 80th inpatient day of this stay.  For seventy-two days, she has been confined to the PICU.  And here we are, on the cusp of another week and another echo.   The snow falls, flake by flake, finally amassing to something visible only when millions have fallen, though each flake so beautifully unique, intricate, designed.  The season passes and returns again.  The snow falls and is eventually blanketed by another layer, and another.  On and on it goes, year after year, individual snowflakes bound one to another and pressed down, compressing under the weight above of snowflakes past and snowfall present.  With imperceptible motion, gravity pulls at the enormity of the glacier, drawing it down, gouging sheer rock from its place of such seeming eternity.  And one day you stand in that magnificent space, that airy immensity of openness where once there was rock and now there the indescribable joy and feeling of exhilaration, of peace silently emanating from an emptiness between ridges of mountain, bright blue lake before you and green sweeps of valley rising all around, blankets of wild flowers, tender and tenacious.

What is the Lord up to?  I cannot tell you.  I stand in the storm, snow falling all around, each individual flake unique and perfectly designed and joining the masses to become indistinguishable.  I may never see with these earthly eyes, that breathtaking mountain valley, blue lake reflecting blue sky.  The Lord’s ways are not my ways.  His story, His creation spans eternity and I and this story of Allistaire are but a breath, but a passing vapor, not insignificant but designed, intricate, unique.  I don’t know what to pray, my heart too weary to muster words, but I fall at His feet.  I am so very weak Lord, so bruised and tender, tired, so tired.  Why so downcast Oh my soul?  Why so downcast?  Put your hope in God, put your hope in God.  He is my only hope.  He is my anchor in this storm, this thrashing back and forth, this constant buffeting of wind, I am tied to Him, in Him.IMG_3016 IMG_3019 IMG_3021 IMG_3022 IMG_3024 IMG_3025 IMG_3034 IMG_3036 IMG_3037 IMG_3041 IMG_3049 IMG_3055 IMG_3056 IMG_3058 IMG_3067

 

Mar16

Buoyant

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FullSizeRenderIt’s amazing how your whole world seems to shift when you suddenly see that crack in the door that seemed so thick and dark and impenetrable, but there it is, this crazy brilliant blaze of light, flooding, arching, enlivening the air around you!  Your foot steps out with greater stride.  You yearn for a jaw and muscles of cheek that would enable a bigger smile, a fuller beam from your face.  You want to stop people and tell them, you want to lift your throat to the blue, blue sky and declare, “My kid might make it!”  I’ve been stopping to smell the flowers, the ones that smell like jasmine and fragrant the air going up the stairs to the parking garage.  The sound of birds in the morning, birds in the evening, they now sing a song you feel yourself singing – a song of declaration that life cannot be held down by death.  I careen my neck backward and stare up at the blue of sky broken with criss-cross of pale pink blooms, thousands of petals on cherry trees.  You rejoice that one can buy daffodils and tulips, even if you cannot because you inhabit a world where no plants are allowed – but they are there, exulting that spring has come, wild, exuberant, lush spring has come again to the world!

My rejoicing at the coming spring came at the very first signs of its presence, at the crocuses pushing through the soil, at the tender buds on seeming dead trees, at the sound of that first robin.  Spring makes my hear soar, soar.  In the midst of my darkest days over the past few months, spring has quickened my step, reminded my heart to hope, to be on the lookout for life, for rejuvenation, for overcoming the cold grip of seeming death.

But today I was amazed as I walked up to the front of Metropolitan Market – the absolute extravagance of life just exploded with glorious color around me.  I wanted to tell the people to stop and stare and gape and be in awe of how rich and overflowing this life is!  Look at this life!  It is a wondrous, wondrous, mind-blowing sensation to realize your child, the one seemingly doomed to death, might just make it, might just have a way through.  I tell myself to restrain, to not hope too much.  The end is yet veiled.  But I DON’T CARE!  I am full of swirling, bubbling joy at the hope, the possibility made more tantalizingly real, that Allistaire Kieron might just do what was said probably couldn’t, wouldn’t.

My dad, who spent the weekend with Allistaire, texted me as he left the hospital yesterday, that Allistaire would have an echo today.  Sudden heat of fear swamped over me.  I thought it was going to be a chill Monday.  I thought I wouldn’t have to worry about another echo until next Monday.  I scanned and scanned, running over all the details I knew about Allistaire, looking for a glimpse into today’s echo results.  What I knew is that Allistaire’s appetite had continued to improve and her energy level was nearly off the charts.  The girl was so full of wiggling, giggling life!  Signs of the wean off Milrinone failing would be fatigue, lack of energy, nausea, lack of appetite, increased BNP, increased heart rate, decreased profusion, weaker pulses, slower capillary refill, worsening kidney function numbers – none of this – there was not one indicator that the drop from .75 last Thursday to .6 had any negative effect.  If anything the girl just seemed like she should explode out of the ICU out onto a playground.

This morning I awoke with a prayer that is prayed nearly everyday as my alarm goes of at 5:37am.  “Lord, hold me up, come what may.  Lord, oh God, well you already know what I so desperately want – you know I want Allistaire’s heart to regain its strength so she can go onto have her transplant and onto life without cancer.  Help me to yield to you.  Oh Lord, hold me up, hold me up, come what may.”  The labs showed an ANC of 808, a BNP of 669 and great kidney function numbers.  Did I dare hope that today’s echo could be, well, could it be, maybe, a wee bit better?  Such a frightful thing to hope, to stick your neck out rather than roll into that protective ball like a potato bug.

The echo was wrapped up by 9:19am and I was comforted by a giant font of a heart rate on the monitor that came in about 115 beats per minute with a respiration of about 20.  So, so much better than two months ago when her heart rate was in the high 180s and her respirations in the 60 plus breathes a minute.  Then the hours wore on and on.  Allistaire’s been popping up each morning about 8am and has been in rounds with myself and the doctors nearly every morning.  She loves it.  They love it.  I love it.  I don’t think a patient in the ICU has ever participated in rounds before.  But the 8am wake-up makes the day seem two hours longer than in times past.  I had lots of time to work on writing a pile of thank you cards that had been harassing me for weeks.  I asked the nurse nearly every hour to check the computer to see if the echo results had been posted yet.  By 1:30 I asked the nurse to page the cardiologist to let her know Allistaire naps at 3pm and I’d really like to hear from her by then.  At about 10 to 3 she said she’d be there in 15 minutes.

Jenn, the Child Life Specialist, was in doing some medical play with Allistaire where Allistaire gets to do to a doll all the sorts of procedures done on her and she and Jenn talk nonchalantly about it while Jenn gathers intel about what Allistaire prefers when she gets a shot or has to have her lines flushed.  Allistaire is joyfully oblivious and just likes putting bandaids on the doll, now named Jewel.  I know the time is coming, it’s coming, at any moment Dr. Kemna is going to walk through that door.  I suddenly realize it could be worse, oh what if it is worse?  How utterly disappointing.  I pray.  I remind myself that God is in control of every detail of Allistaire’s flesh.  No matter the results, they come from God’s hand.  He will be the one handing me the results of this echo.  Will I look beyond this moment, beyond this detail of what I so desperately want.  Will I lift my eyes and look out, up, wide, high, deep, not just temporal, but eternal? Hold me up Lord.  Hold me up.

When Allistaire spies Dr. Kemna, she immediately dives underneath her blanket, a quiver of barely constrained glee.  She has clued me into the game we must play.  Jenn and I begin to fear the soaring of dragons looking for some tasty girl to munch on.  Oh dear!  Where can Allistaire be?  Oh it looks as though the dragons already got her, she is nowhere to be found.  The blanket is a roiling flowered sea of five-year old delight with periodic poking out of legs and little fingertips gripping the edges.  Dr. Kemna joins in and only amps up Allistaire’s joy.  Finally she emerges and Dr. Kemna listens to her heart and I restrain myself a few more seconds from demanding the only number I care about today.  Finally, finally she turns.

Dr. Kemna tells me she doesn’t think Allistaire’s heart has improved as much as the number indicates.  She has an ejection fraction of 35 (up from 21 last week) and a shortening fraction of 15 (up from 11).  My heart leaps and squeals with unfettered joy!  In further conversation, Dr. Kemna tells me that Allistaire’s heart does look a little better, but she’s not so sure it looks as good as an EF of 35, maybe more of an EF of 29.  Huge smiles!  Massive elation!  29?!  That’s awesome too!  I mean, good grief, 35 is spectacular but even if 29 is the conservative number – that is so totally glorious!  She says there is a clear improvement from the echo three weeks ago when her EF was 11 and the most clear improvement is that the mitral valve looks better.  Apparently, once the mitral valve begins to go, as was so clear on that awful echo three weeks ago, the heart just begins to lose steam and try as it might, it just gets worse and worse.  Once the heart is so dilated that the mitral valve begins to fail, the blood regurgitates back into the chamber and efficiency is lost.  This makes the heart have to work harder which dilates the heart still further, only worsening the whole situation.  But Allistaire’s mitral valve is on the mend and this, Dr. Kemna said, is the most encouraging sign for her heart.  The other great thing is that Allistaire is still not even on the maximum number of meds that may be able to help her heart recover.  As her dose of Milrinone goes down, the cardiologists are hoping to add Isosorbid dinitrate & Hydralazine.  Once she is stably off Milrinone, they would add on Carvedilol as well.  I’m all for as many option to help sweet girl’s heart as we have available!

As Dr. Kemna gazed at Allistaire, now frolicking to an even greater degree with Jenn and Ashlei, our social worker, she asked what is keeping Allistaire in the hospital.  “Milrinone,” I said, “only Milrinone.”  She’s off TPN and lipids and is successfully getting in enough fluids and calories each day, her neutrophil count is far over the needed threshold of a minimum of 200 and she is taking all meds by mouth with the exception of one dose of Lasix each day which can easily be converted to by mouth.  Even her chemo, Azacitadine, which is set to start sometime this week, can be given out-patient.  Dr. Kemna agreed that Allistaire is definitely ready to take the next step down in her wean off Milrinone and ordered the dose to drop to .5.  When the heart failure team met last week, they all agreed that Dr. Hong’s proposed .1/week wean was far too slow.  A typical wean is in drops of .25 every couple of days, “So,” Dr. Kemna told me, “a .1 drop every one to two days is still very cautious.”  From what she explained, often you can go a bit quicker in the wean in the middle of the doses and then just slow down more when you get toward the very end.  At this point, she will be checking in on Allistaire each day and will reassess whether or not she can drop to .4 either this Wednesday or Thursday.  “If she continues to look this good, she’ll have no problem with the next drop,” Dr. Kemna told me.

Bright, crazy beautiful beam of intoxicatingly beautiful light!  Oh, and Allistaire is no longer a baldy top.  She’s more of a fuzz top now.  So soft and so seriously adorable.  Thank you God.  Thank you!

And here’s a little gem for you to enjoy – Allistaire as a star in a short bit on PBS about music therapy 🙂  Click HERE

Mar11

Glimmer

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IMG_2964Delayed Gratification.  Joy Set Before Me.

You can endure a lot…if, if you see a glimmer of light.  If you can grasp onto that shred of hope.  But if it’s all for not, if nothing will come of all your straining, all your loss and sacrifice, it’s ever so much harder to press forward.

But…you catch that glimpse…you sense before you that the light is coming and it invigorates you to lean into the endeavors before you.

I don’t know if Allistaire will make it out of this alive or not.  There is so much good I can easily imagine if she lives.  There is also good I can imagine if she dies.  If she dies, I pass over that line.  I enter a territory I have never yet had to tread.  If she dies, I will dwell there, with them, with Beth, Merle, Rachel, Julie, Devon, Ryan, Darliss, Janett, Shannon, Susan, April…I will share in their company and that would be good and I would have an understanding that at this point is only imaginings.  I cannot let go of my sweets but it hurts my heart to not be able to draw yet closer to them in their places of pain and hope.

For now, we are here, here in the dark but with a glimmer.  For me the glimmer began with remembering the statement that, “I would be flabbergasted if your insurance approved this transplant.”  This was voiced by a woman who has been integral to coordinating all the details of transplants for years.  And you know what, Blue Cross Blue Shield of Montana has approved Allistaire’s transplant.  Flabbergasted has happened and it was a sweet, tangible reminder that the “unlikely,” has happened so many times for Allistaire – good and bad.  What shouldn’t have been, has.  So if the doctors say she probably won’t recover the needed heart function, well, they could be right, but they might not.  Flabbergasted can happen.  It is a reminder that God will do what HE will.  There is SO much to tell, so much in fact that I’m sure I will fail to get it all down.

When did the shift begin?  On February 15th Allistaire finally showed evidence of her bone marrow recovering after 38 days at zero.  Then there was a solid week of serious pain as her white blood cells flooded her gut and got to work on healing.  Sometime in the few days preceding our especially difficult care conference, as her ANC continued upward, her pain began to subside to the point that she now needs only one dose of pain meds every several days, if at all.  On the day of the care conference something wondrous happened.  Her BNP (Brain Natriuretic Peptide), dropped below the terrifying lab value of greater than 5000.  This has been its approximate path:  Over 5000, 3800, 3200, 4000, 2600, 1400, 972, 1040, 1320, 1090, 2350, 552, 1100, 749, 1070.  The big blip back up to 2350 was most likely due to getting blood the day before on her birthday.  A transfusion of blood resulted in a big increase in fluids and blood is a very heavy fluid so while the heart loves blood, the big extra dose caused a bit of distress in that narrow window.  I cannot convey to you how glorious it is to have that wretched number dropping!  I have no idea if it’ll keep going or if it will settle at some point.

Another development is Allistaire’s overall activity and joy level.  The girl is coming back to herself!  I remember trying to get Allistaire out of her bed after a week in the PICU to have her walk to the door of her room – it was such a great and painful effort.  In reflecting back to the days after Allistaire’s transplant and being in bed so much, I knew the sooner we could get her walking again the better.  The scope of my abilities to directly help Allistaire through all of this are so limited, but I knew I could help her get moving.  So what began as one walk a day from the bed to the door turned into a lap from bed to couch to door and back to bed, three times a day.  We kept increasing the distance and the frequency.  Thankfully, the Infectious Disease doctors approved the same activity plan she had up on the Cancer Unit which meant we could finally leave the room as it was getting absurd to try to make progress within the confines of her small room.  We are now up to a lap around the PICU and Cardiac ICU five times a day.  That is equivalent to a half mile a day.  She giggles now.  She jokes with the doctors and nurses.  She plays around in her bed and kicks and seems to have no limitation on her movement.

Last week Dr. Yuk Law, head of the Heart Failure team, was our attending cardiologist.  One of my greatest joys has been seeing him watch Allistaire with a look of disbelief on his face.  My impression of him, which has been supported by that of others, is that he is a very even keel man.  As he watched Allistaire frolic in her bed, he pointed out that she was moving a lot.  “Well, yeah,” I thought,”that’s Allistaire you’re looking at.”  I then went on to tell him about her progress in walking around the Unit.  With a look of surprise, he asked me to clarify that she was, what, out of her room, walking around?  Yes, yes, around the unit five times a day, I reiterated.  You see, she is literally the only person in the whole ICU who is walking around.  He wanted to know if she got out of breath.  “Not even a hint of out of breath.”  He said he was astonished.  He watched to see her as she finished a lap to verify my report.  With a dropping BNP and such incredible physical activity, he discussed the possibility of trying to wean her Milrinone, but he wanted to wait for Monday’s echocardiogram.

Flabbergasted.  Astonished.

On Thursday, March 5th, two weeks after her last discouraging CT, Allistaire had another.  This CT would look for fungus in the sinuses and chest with the hopes that if it were not there, we could stop the Micafungin, which is a very broad spectrum IV anti-fungal, and return the prophylactic, Fluconazole.  They would also look at her gut to see the state of Typhlitus.  If she was all healed up, they could finally end over 50 days of broad spectrum antibiotics.  The CT showed that the sinuses were completely normal and clear.  Moving down to her chest, it says the “lungs are clear.  Previously noted predominantly sub pleural groundglass opacity and consolidation has resolved.  The proximal airways are patent.  No pneumothorax or pleural effusion.”  Previously noted small right pleural effusion from 2/20/15 has resolved.”  Did you get that?  Things look normal.  Issues have resolved!

It goes on: No enlarged lymph nodes (a common place for her cancer).  The liver, spleen, gallbladder, biliary tree, pancreas, adrenals, kidneys and bladder are normal.  No pathologic mass identified.  Previously noted multifocal bowel wall thickening involving the colon and rectum has resolved.  The bowel is now normal.  The appendix is normal.  What sweet relief!  Her whole gut has totally healed, there is no fungus and you know what, even previous evidences of heart failure in her lungs and liver were not mentioned because they are not there!  I was so elated!  This also meant two more IV meds are done.  Over the preceding week, we had begun to transfer IV meds to be given by mouth as she could handle it.  As of today the only IV meds Allistaire is on is Milrinone and Lasix.  Of course, she takes a total of 20 doses of meds by mouth each day, but a number of these are just preventative.

The other big development is that Allistaire has begun to eat.  I joyously charged into Pagliacci Pizza last Monday evening to declare that my girl, who had not eaten in nearly 60 days, wanted cheese pizza and lemon San Pelligrino.  She ate with a zeal of old.  Then she threw it all up.  Too much too fast.  Over the last week she’s struggled with nausea but continued to have an appetite, even requesting a hotdog the other morning before 8am.  Tonight’s request is chicken quesadilla, rice and chips from Chipoltle.  The nutritionist was able to reduce the calories in her TPN (IV nutrition) and get rid of her lipids all together. Over the weekend, Dr. Law decided to have the team completely cut the TPN given that oral fluids have less of an effect on the heart than do IV fluids.  I won’t deny that I was surprised and frustrated by this rapid adjustment.  Getting Allistaire to eat is a time-consuming and often very challenging, stressful process, especially when it all ends up in being thrown up.  Nothing is more defeating.  A typical meal requires 2-3 hours of tedious intermittent bites and prompts to drink.  By last Friday she was probably taking about 500 calories in a day with a total daily goal of 1,200 calories.  So much of it is hoping Allistaire won’t be over nauseous (she is on anti-nausea meds she gets every 6 hours) and strategy – what will give her the most calories that she can also keep down.  (By the way, this is not a request for input on this matter.  Believe me, I’ve had countless conversations, and innumerable attempts at a variety of options.  We are three plus years into this food battle and I admit, advice at this point is not welcomed.)  Yesterday the girl got 1,300 calories in.  I was amazed!

Today we’ve had to make a few food adjustments due to an “acute kidney injury.”  As a result of all the Lasix, which pull off fluids and are thus quite hard on the kidneys long-term, and an electrolyte imbalance, her BUN (Blood Urea Nitrogen), Creatinine and potassium levels have crept up and were quite a bit too high today.  Because they monitor all of these levels daily, the doctors are able to catch issues early and make adjustments.  A number of meds were held this morning that impact potassium levels and fluid load.  Also, I am not giving her milk or orange juice today, both of which are high in potassium.  They retested labs this afternoon and thankfully her numbers have trended down now nicely.  Most likely she can resume her regular meds tomorrow.

The issue with her kidney’s also prompted a hold on the planned wean of Milrinone, originally set to begin today.  Allistaire had her echocardiogram on Monday.  It was a bit deflating.  Dr. Hong, the attending cardiologist this week, said that while the EF (Ejection Fraction) is up to 21% from 11%, she says her heart looks about the same.  We had a lengthy conversation which included looking on the computer at her echo from back in December when her EF was 65%.  Of course there was a marked difference.  Dr. Hong seemed cautious to not be too optimistic and over-promise.  This was where we had a bit of tension.  I’m not looking for grand results in two weeks time.  I’m looking for a shred of hope that shows she is going in the right direction.  I’m looking to take stock of every victory no matter how small.  I know it is no guarantee of what will come, but I have to live out these days and I need that fuel of hope to keep me going.  Dr. Hong did say that her right ventricle, which had looked fine until the last echo two weeks ago, had improved, as had the function of the mitral valve.  They haven’t recovered fully but they are better than they were before.  Hopefully this recovery will in turn aid the recovery of the left ventricle.  The cardiologists will meet today to discuss med changes including the possible addition of another med and the likely wean of Milrinone, set to begin tomorrow.

I have never felt so weary, so utterly tired.  The planned wean of Milrinone will be incredibly slow this time.  Last time they weaned from .5 to zero in a week.  This time they plan to wean .1 per week, starting at .75 which means a seven and a half week wean to zero, five times slower than before. This is wise because we all want her body to have the very best shot at successfully coming off.  Yet, as I calculate out the very, very best scenario it would be three more months until transplant, which assumes the ability to keep her cancer in remission, a successful wean and sufficiently improved cardiac function.  This is a lot to assume.  Nevertheless, if you add these three months to the 100 days post transplant one is required to stay in Seattle for, we’re looking at a minimum of six more months.  I’m packing up my wool sweaters to send home with my mother-in-law, JoMarie.  But I’m wondering if the seasons will turn again and again with us still here and I may need to wear them again in this place.  Daunting.  So very daunting.

Friday was Allistaire’s 5th birthday.  It was a crazy, whirlwind of a day, fun and emotional.  The point of celebrating a birthday is to remember back to that day your beloved came into this world and to express thanks for each year since.  I could never have imagined when Allistaire was born that this fight against cancer would exist, much less so consume her days.  Four out of five birthdays have either been in the hospital or under the shadow of treatment.  We did nothing for her second birthday but be glad to be home after leaving the hospital the night before at 11:30pm when her last dose of chemo for that round had been given.  Her third birthday was spent in the hospital soon after her first relapse, just the two of us. Her fourth birthday was a grand event at home, only two days after she had her Hickman line removed at Seattle Children’s marking the end of treatment but with the looming fear and wonder of what the coming year would hold.  For me Friday was a day to be in both wonder and in sorrow.  It is wondrous to me that her life has been extended over and over and she is here with us for another birthday.  And my heart is heavy with grief that her little girl years have been so constrained.  I think of the lives of other little girls and the contrast is so stark – like a sudden punch in the stomach.  I am so keenly aware of the fact that this could be her last birthday, that her life ever hangs in the balance.  Tears threatened throughout the day.

I also nearly cried as we walked into her room that afternoon.  A sweet woman, Libby, from Soul Illuminations, had volunteered to come and take photos of us so we had headed down the hall to the Quiet Room where the visuals are better.  When we came back to the room, the bed had been shoved to the far wall and the room was full of joyful faces eager to celebrate Allistaire and see her delight.  Sarah from PT (Physical Therapy) came with her parachute and a group was bouncing a beach ball a top the parachute.  There was music and clowns and cakes and too many presents and just a whole lot of love.  Again I had to hold back the tears – that she would be so loved, so celebrated, that so much planning by the hospital staff would go into making this day special for her, well, it was overwhelming in such a beautiful way.  And it was a special joy to have Solveig and JoMarie surprise her for her birthday.  Ah, two sisters giggling.  There is nothing better, nothing.

When Allistaire was two weeks old I took her to see Caroline, her great-grandmother who was in a nursing home.  We arrived to find Caroline in her group time with fellow Alzheimer’s patients.  Two of the women asked how old Allistaire was.  I told them, “Two weeks.”  “Wow, just two weeks,” they exclaimed with ooos and sweet faces of cherishing delight.  A minute later they would ask the same question, which yielded the exact same level of surprise and delight.  This went on and on.  Same question.  Same answer.  Same response.  It was comical in one sense, but I realized that this question yielded a wonderful answer. What about when these same women asked about their husbands who had likely passed away.  They had to meet the news of their beloveds’ death over and over, with the same shock and sorrow.  It’s not quite the same for me but there is a fair amount of similarity.  There is no clear course.  I look at a little girl so full of life and joy and exuberance and some neon sign next to her head flashes, “probably not going to make it, probably going to die, don’t get your hopes up.”  I look at this test result and hope.  I look at that test result and fear the worst.  One doctor emphasizes, “kid’s are resilient, they surprise you all the time,” and another keeps a straight face and offers no hint of optimism.  I feel flung to and fro, bashing up against this likelihood of death over and over as I swing back around.  It is not just a day-to-day existence here but a reality that from morning rise to evening’s setting sun the whole nature of things can change.

No matter how normal this has all become, no matter how cheerily I decorate her room, I constantly meet with shock the dark presence in the room.  But I’m looking for joy, joy in the day and joy to come.  I am fixing my eyes on the God who counts the number of hairs on my head and who determines each day, hour, minute, molecule, ion.  It is His to choose where these days lead.  It is His tale to tell.  And what is my life anyway?  Is it so very essential that I check the boxes I’m told relentlessly make up a good life?  My life doesn’t fit into those wee constrained boxes and neither does my God.  His ways are not our ways and there is thrill, there is invigoration, there is anticipation, there is leaning into these days.  I am on the look out for what He will do.  I am on the look out for my God who gave me this small, loving, beautiful, hilarious, strong, feisty, wondrous girl.  Thank you Father for the abundance you have given.  Thank you for better days and for a glimmer of light.IMG_2848 IMG_2860 IMG_2867 IMG_2870 IMG_2873 IMG_2876 IMG_2883 IMG_2889 IMG_2890 IMG_2891 IMG_2892 IMG_2893 IMG_2895 IMG_2896 IMG_2897 IMG_2904 IMG_2909 IMG_2911 IMG_2929 IMG_2933 IMG_2935 IMG_2937 IMG_2939 IMG_2941 IMG_2949 IMG_2951 IMG_2952 IMG_2954 IMG_2956 IMG_2957 IMG_2958 IMG_2962 IMG_2963 IMG_2968 IMG_2971 IMG_2977 IMG_2981 IMG_2984

Feb27

Bewilder

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IMG_2817Bewilder.  Is that the right word?  I startle to find myself out in these woods, not sure where I am, sometime between night and coming day, or is the day done and night approaching?  I am out here, cast in the land between lands, this already and not yet, ever tension.  But she is so alive?!  “So to summarize,” I say when there is nothing left to say, “You don’t believe she will make it?”  All heads nod.

I didn’t want to cry.  I didn’t want to have my heart tearing out of me be seen as with audience by these eight.  I fought the tears knowing the all consuming fatigue they bring, all the cells of my flesh flattened under crushing weight, silent and unrelenting.  I studied the tree tops beyond those panes of glass, never seeing them.  “Her heart could suddenly stop.  She could have an arrhythmia.”  Gutteral cry, “Oh God.”  It was not hard for the images of doctors swarming her to come vivid.  Throughout the day and night the speaker in the hallway, the speaker in the room declares, “Rapid Response Team, Code Blue,” always joined with the location.  “Code Blue Ocean 8 in front of the lab.”  “Code Blue River 5 room 307.”  I have seen the flood of doctors and nurses responding like blood gushing a wound.  Instantly I can hear the words, “Code Blue Forest 6 room 321,” and this time it would be my sweet girl.  I know if it came to this it would be the end.  While they might be able to bring her temporarily back, there would ultimately be no return, no recovery.  But yes, yes, yes try to bring her back because I want to gather those who have so cherished her.  I want that time to surround her with faces who hold her dear.  I want that chance to say good-bye one last time.  I want to blow her kisses.  I looked into the cornflower blue of her eyes and mourned that the one beautiful thing I clearly gave her might be lost.

Dr. Kemna, the cardiologist does not think there is a very good chance she will be able to recover the degree of heart function necessary to qualify for transplant, that far off ejection fraction of forty-five, if she can recover at all.  At some point in the future, they will try to wean her off the Milrinone.  Her ability to successfully wean off Milrinone or not will be an indicator of the likelihood that her heart can recover some function.  So while Milrinone does nothing to help the heart recover, whether or not it is needed to function well in terms of things like breathing and profusion to the rest of her body, will signal how severely her heart has been wounded or the possibility of resilience.  If she is unable to go off Milrinone, it may be possible to move her up to the cancer unit, or even possibly to Ronald McDonald House, but these moves would solely be to maximize quality time with her.  It would foretell the end.  If she can successfully wean off Milrinone she would continue on oral heart meds and consistent monitoring to see if there is any improvement in her heart function.

All efforts to improve her heart function is dependent on the resource of time.  It will take time.  The question is whether or not her cancer will allow such time.  As noted before, we are working off the assumption that she is in remission given that she started this round in remission in her marrow.  The extremely poor condition of her heart continues to make sedation unnecessarily risky.  The PET/CT scan can physically be given without sedation, it is just a matter of whether or not Allistaire can stay still enough for the 45 ish minutes it would take to do the scan and get a good image.  She can certainly lay still for the very brief 30 seconds a CT requires and so we may start with that.  Dr. Gardner said the down side of CT is that it can show lesions that are actually healing rather than solely active leukemia, with no ability to tell the difference on the image.  The advantage of the PET scan is that it shows the active metabolic cancer.  Thankfully, a PET scan carries no risk as it is not a form of radiation and so the worst that could happen is that we try it and it doesn’t yield a clear image because Allistaire doesn’t stay still enough.  For now a bone marrow biopsy is not an option, but they will be drawing peripheral blood upon which the pathologist will conduct Flow Cytometry.  While it will not be conclusive, it will be comforting if there is no leukemia present which would in turn more affirm the view that she is in remission.

Without any further treatment, Dr. Gardner says Allistaire only has about a 10% chance of staying in remission.  I can’t imagine doing nothing further.  So once her ANC reaches 1,000 she will begin getting Azacitidine.  Today her ANC is 348.  Neither Clofarabine or Decitabine are options because they suppress blood counts too much.  At this point, any further bacterial or viral infection for Allistaire could easily and immediately tip her heart over the edge.  She has no reserve.  The hope is that Azacitidine will be enough and have the same success it did in the seven rounds she had after her bone marrow transplant.  Another upside is that it can be given outpatient.  If she still has chloromas, the solid leukemia seen on PET/CT, there is the possibility of doing focal radiation which would likely be very effective.  However, radiation is given under sedation for someone as young as Allistaire.  You must lay completely still in the exact position they place you in.  Radiation is incredibly precisely targeted.  A styrofoam form was created to lay Allistaire in the last time she had radiation and three permanent little dots were tattooed on her body in order to line everything up with the rigorous calculations done in preparation.  Allistaire would be left totally alone in that room with the foot thick lead door.  I really don’t know if she could do it.  If Allistaire is not in remission, every single thing changes.  If she is not in remission, she is done, done.  There is nothing left to offer her because anything that has the potential to get her back in remission would be far too harsh for her body to endure.

One other possible option, which like transplant, requires substantial improvement of heart function is the WT1 trial with the modified TCRs being conducted by Fred Hutchinson Cancer Research Center. (Click HERE for details on this trial)  This trial requires that Allistaire’s ejection fraction be 35 or higher.  Typically the cell manipulation is done with donor cells left from a stem cell transplant, however, in Allistaire’s case they could ask the donor to donate cells directly for this trial.  The scientists would engineer the donor’s T-cells to specifically target the WT1 protein expressed on the surface of her leukemia cells and in turn destroy the cancer cell.  Check out more about TCRs (T-Cell Receptors) at Juno Therapeutics some of whose scientific founders include Dr. Phil Greenberg at Fred Hutch and Dr. Mike Jenson at the Seattle Children’s Ben Town Research Center.

The other topic that was discussed was the potential use of VADs.  The other day when I logged onto the Seattle Children’s Hospital Family Network, their website popped up and the main page was featuring the expertise at Seattle Children’s and extensive availability of a variety of VADs – Ventricular Assist Devices.  My face lit up with possibility and terror at such a possibility, such an extreme measure.  It said that VADs can be used for patients with heart failure to allow their hearts to rest and recover.  I immediately tracked down the cardiologists and said I wanted to discuss a VAD as a possible option for Allistaire.  Apparently Dr. Gardner had the same idea and discussed it with the cardiologists before our care conference which occurred yesterday afternoon.  The short of it is that a VAD is not an option for Allistaire.  You cannot go through a bone marrow transplant with a VAD.  The context in which they are successfully used in the short-term is for patients whose heart has an acute hit, from a virus for example, but was previously healthy.  The VAD can indeed give their heart the rest it needs to recover and the relative health of their heart can also recover from the actual damage done by implanting the VAD.  In Allistaire’s case her heart is exhibiting the cumulative effect of all the harsh chemo she has endured.  It has been compensating a very long time and likely cannot bounce back.  A VAD in her case would only be possible as a bridge to heart transplant, which as one with cancer, she is not eligible for.  The thought of a heart transplant is insane to me, insane.  But I won’t deny that if she were in this plight on the other side of her bone marrow transplant, I would not let up, we would walk forward to the transplantation of her most core organ.  The cardiologist noted that in cases of chemotherapy induced cardiomyopathy, it doesn’t usually show up for another 10-20 years.  That sounds like a long time.  But really, Allistaire would still only be 15 to 25 years old with a heart that has failed.

It is uniquely woeful that the very treatment that has extended Allistaire’s life these past three plus years is what has so damaged her heart.  Yesterday the cardiologists wanted an X-ray of her lungs to look for edema.  They put the little lead heart on her groin again and it was like a knife twisting in me.  In the care conference I found myself internally crying out, “You’ve already taken so much from her, so much…now this too, this?!”  I’ve already yielded her ovaries.  I’ve already acquiesced to the reality that TBI (total body irradiation) would impact her cognitive abilities.  I know her growth and bones have already been harmed.  She has already lost so many days as a child, and now her heart too will be gouged out?  It is like cutting off someone’s leg and saying, be happy, you still have one leg.  And then, oh wait, we must cut off that other leg and an arm.  Limbless, you are thankful to be alive.  But you have been harmed you see?  You have been ravaged.  The exchange for your life has cost so very much.  But it turns out you cannot live without your heart.

I asked Dr. Brogan, our main ICU doctor, if he had any wisdom he could offer, having witnessed so many families over the years walk this road.  “I don’t know how to do this,” my voice bleak.  “No one knows how to do this,” he told me.  It is not natural that a child should die before their parent.  While it happens often enough, it is not the natural order.  He was very gracious toward us.  I am so very glad to have him on our team, and like Dr. Gardner, I have invited him and asked him to speak to us honestly if and when he believes we have exhausted our options.  Dr. Gardner told Sten and I yesterday at the end of the care conference when it was just the three of us, that she thinks of Allistaire every single day.  That is all I could possibly ask for.  I just need to know that she is being fought for, that she is not being given up.  And if they believe the time has come, let them speak and at last we can yield, at last we will rest from our relentless pursuit of her life.

For now, we press on.  It is not yet time to lay down and rest.  We press on, we endure.  We put our face to the wind and cry out in anguish and fierce determination.  There may be a way through, there may.  There are so many mysteries of how our God works, of his sovereignty and the intertwining of our prayers.  I am humbled, brought low, so low with gratitude for thousands who cry out to the Lord on Allistaire’s behalf, on ours.  Thank you.  Thank you my brothers and thank you my sisters, bound eternally by the blood of our sweet savior Jesus Christ.  Thank you for sharing our burden.  Thank you for standing out in the wild night under that sweep of stars, that dense shimmer and gauze of Milky Way and crying out for the Living God of the Universe to hear your one small voice!  For we are calling out to you Oh GOD!  We do not understand your ways.  What you are doing is here is so unclear, it seems so dreadfully wrong.  How will you ever, ever redeem this loss?

I find myself again standing with the blaze of roaring furnace behind me declaring that I know my God is able to save, but even if He does not, I will not bow to any other god.  I will stand in worship, though the fire consume me.  Am I fool?  Many will nod, yes.  But you see, I have seen the Lord.  I have heard His voice.  I choose to turn my face to Him.  I will again fix my eyes on Him.  I will yield again to His call to trust though the mountains fall into the sea, for the joy set before me.  For the joy that will come, but the joy too that is, that is in this present time.  I seek to be fully present to these minutes, these gritty seconds that accumulate to the sum of minutes, hours and days.  I instruct Allistaire to consider her tone with the nurses when she is irritated with their presence.  It is not about manners, it is about love, love.  I seek to love.  I seek to love Allistaire.  I seek to love Sten and Solveig.  I seek to love each nurse, doctor and person that I encounter.  For this is my life, to love the Lord my God and to love His creation that bears His image.

Thank you to so many that have given generously to further cancer research.  Thank you for your heartbreak over Allistaire’s broken heart and a yearning that there could be a better way.  If you would like to stand with us in funding cancer research so cures for cancer can be obtained without costing so much life, please consider supporting me in Obliteride which gives directly to cancer research at Fred Hutchinson Cancer Research Center.

Also, my dear friend and fellow cancer-fighting mom, Pam, has organized a time to call out together to God on behalf of Allistaire.  The details can be found HERE on Facebook.  The time is set for next Friday morning, March 6th, Allistaire’s 5th birthday.  Please do not send any birthday gifts.  The truth is, she has enough in the way of toys and such.  If you wish to honor her life and the hope for more life, again I ask you to consider taking that desire and investing it in cancer research, and certainly, please pray for my girl.  Prayer is not some magic equation where enough prayers by enough people yields the desired result.  Philippians 4:6-7 says much to instruct us:

“Do not be anxious about anything, but in everything by prayer and supplication, with thanksgiving, let your request be known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”IMG_2804 IMG_2809 IMG_2824 IMG_2822 IMG_2813 IMG_2802

 

Feb24

Severely Diminished

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Pediatric Echocardiogram Report:   Name: Allistaire Kieron Anderson

Summary:

1.  Severely diminished left ventricular systolic function

2.  The left ventricle is moderate to severely dilated

3.  Ejection fraction (apical biplane) = 11%

4.  The left ventricular fractional shorting is 8%

5.  Mild to moderate mitral valve insufficiency

6.  Markedly abnormal left ventricular diastolic function

7.  Dampened systolic amplitude due to poor cardiac output

8.  Moderately dilated right ventricle

9.  Severely diminished right ventricular systolic function

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

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

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

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

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

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

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

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

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

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

 

Feb22

Wait and See

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

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

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

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

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

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

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

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

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

Feb18

Weeping

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

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

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

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

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

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

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

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

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

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

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

Feb12

Stagger, Tremble

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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