Tag Archives: Milrinone

Long Shot

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0809151929I slow the car heading down the hill on 65th, allowing a mom and her two children to cross the road.  Blonde curls bounced and flounced as the little girl, about two, followed her mom casting glances back at me.  Without intention my brain delivered up the thought, “maybe that’s what Allistaire would have looked like, alive, out thriving in the world, hair growing toward shoulders.” Immediately I slam the gate close and fix my attention on getting back to the hospital in time for the end of Allistaire’s nap.

It felt as if Monday was a day of dividing, a narrowing once again of the path, splitting the road down into two opposing directions.  The morning began with the news that the cardiac anesthesiologist may have to use Milrinone during the sedation which would mean recovery in the ICU and a hoped for wean back off Milrinone.  Both words “ICU” and “Milrinone” evoke heavy, deep terror.  Ugh.  Okay.  Okay.  Acclimate.  Accept.  New norm.  The bigger issue though was what the results of the Brain MRI, PET/CT and bone marrow test would reveal.  Again there was the impending sense of coming down to the end of things.  Yet in the midst of this, strange rest to accept what would come.

For three long hours Sten and I sat out on the patio outside of Starbucks, waiting for the pager to alert us that the time had come to take the next step forward on this journey.  The cardiac anesthesiologist was pleased with how the sedation had gone and had indeed used a combination of Dopamine and Milrinone to keep Allistaire’s blood pressure from spiraling down.  She was recovering in the ICU with the plan to cut the Milrinone dose by half in 6 hours and off completely in another 6.  Allistaire herself was still coming out of the effects of anesthesia and was in the angry phase, yelling bitterly “It’s not fair.  I hate it here.  I want to be in my regular room.”  She beat her fists on the bed and slammed Doggie down over and over.  Such strange words to hear from her, evidence that Allistaire is growing up, no longer a naive little child but starting to sense a yearning for justice and rightness in the world.  It hurt my heart.

As soon as it was clear Allistaire was fine, my attention was powerfully pulled to the fact that it had been hours since the end of the PET/CT and surely by now someone somewhere must know something of what was happening inside Allistaire’s flesh.  I asked the ICU nurse to page Dr. Leger, the attending oncologist, asking for results.  She’d be right down.  My heart began to pound, standing on that ledge overwhelmed by the vast sense of deep space in which I may be about to fall.  The news was good.  The news was bad.  “Her cancer looks better,” she said.  Relief but not nearly enough.  The PET measures the metabolic activity of the areas of cancer with a unit of measurement called SUV (Standard Uptake Values).  The body is deprived of sugar for about 12 hours before the scan and then an injection of glucose is allowed to circulate the body for an hour before the scan is taken.  The more metabolically active, the brighter the area of the body on the scan.  Results less than 3 and even more so less than 2 are considered to most likely be non-cancerous.  All of the chloromas (leukemic tumors) in Allistaire’s body had reduced to less than a value of 2 with the exception of one spot which was 2.3.  The mass in Allistaire’s sinus had reduced to about 6 which is till quite “avid” as they say.  So while it is great that Allistaire had a good response to the chemo/antibody, would it be enough to move forward?  What would forward mean?

The bad news was that there was also a patch of pneumonia on her lower right lobe of her lung.  An active infection.  While Allistaire has had absolutely no respiratory symptoms nor fevers, we all assumed an active infection was yet another slammed door to proceeding with the T-cells.  In the past week it had come to light that Allistaire’s cardiac function was also too poor to qualify for the WT1 trial.  Apparently deep in the details of the protocol was the requirement of an ejection fraction over 40, a currently impossible bar and one that could take months and months to achieve if ever it could.  The problems just kept piling up, seeming to bar the way forward with the T-cells:  poor cardiac function, active infection, Grade 3 toxicity due to ileus in addition to a lack of count (Neutrophil and platelet) recovery we had always known would be an issue.  With the door to T-cells closed the only option would be more chemo but there’s no way to give her more chemo right now with an active infection brewing.  Giving more chemo would just suppress her white blood cells all over again and allow the pneumonia to take over.  She would need time for her body’s recovering immune system to fight the infection which also meant time for the cancer to grow back and spread. Everywhere my mind turned felt like slammed doors.  Sten and I pressed our bodies together in long silent hugs, my legs weak underneath me, threatening to give way.

I went to sleep crying.  I woke twice to dreams of being chased, hunted down.  I woke for long hours in the early morning, hot tears and the slow realization that we might just really be done.  We might need to take her home soon.  Oh sure, it wouldn’t be right away.  They wouldn’t kick us out while she has an ileus and an infection.  They won’t just let her starve to death or intentionally let an infection overtake her.  No, I knew they would continue to treat these issues.  Home would only be an option once these were past.  And for the first time, “quality of life,” was a term I was willing to hold in the forefront of my mind.  Maybe “going down in flames,” wasn’t the only option.  Maybe it would be better to let it happen slowly.

“Oh Lord, oh God, have mercy!  Look down on these woes and make a way through, please Father.”  I called out to the Lord intent on yielding to His Godhood – His ways being beyond my comprehension, but still calling out for mercy.  The Israelites came to mind, pinned between the onslaught of the Egyptians and that vast body of the Red Sea.  There was nowhere to turn, no seeming avenue of escape.  And then the Lord did the incomprehensible.  He parted the waters of the sea and they walked through on dry land.  “Father, part the waters, make a way through,” I cried out.

JoMarie, Solveig and Jo drove away Tuesday morning.  When it became clear that nothing big would be discussed that day or in the next few, Sten and I packed up the Suburban and I watched him drive away.  Always the question hangs of what life will look like the next time we are together.

I returned to the hospital and found a very upset Allistaire in her room.  She was so sad to have Daddy leave and her tummy was really hurting and the pain medicine didn’t seem to help.  Nevertheless we would get up and make our loops around the Unit.  Dr. Leger came toward us and slipped a paper in my hand – the Flow Cytometry results.  No detectable cancer in her marrow.  So great but still my heart slumped knowing the victory over cancer might still be defeated by these wretched side-effects of the very treatment that was actually succeeding at doing away with her cancer cells.  Wouldn’t it be amazing if we found treatments for cancer that only killed the cancer cells?  Wouldn’t it be phenomenal if we didn’t have to poison the kidneys and liver, kill muscle cells in the heart, destroy brain cells, crush hopes of future children by annihilating ovaries?  What is just so blasted frustrating is that there really are treatments that might be able to cure Allistaire from cancer but the very treatment has been so ravaging that she is barred from the final blow to her cancer.  The thought that there is a possible amazing treatment within hand’s reach but may never be attainable because chemo tore her heart, shocked the nerves of her gut to stop working, wiped out the white blood cells that could have defended her against pneumonia and battered her marrow so relentlessly that her life-giving blood cells can hardly rise back up – well it’s simply intolerable, maddening, staggeringly sad.

Dr. Leger told me she would be by shortly to talk with me.  She told me that she’d finally had the chance to sit down with the radiologist and carefully go over all the images.  The mass in her sinus, while still metabolically active as cancer, was actually substantially reduced in size!  So wonderful.  And then, I could not believe my ears, shook my head in wondrous disbelief.  “If nothing gets worse, Dr. Egan plans to go to the IRB on Monday and ask for exceptions to be made for Allistaire.  He’s hoping for a 48 hour turn around and plans to infuse the T-cells on Thursday.”  WHAT????  Apparently Dr. Egan is optimistic that the IRB (Internal Review Board) will approve the exceptions he is asking for on Allistaire’s behalf and expects to have approval in time to give her the T-cells on Thursday.  Wide eyes and jaw dropped in shock and smile.  Apparently the protocol does not count an active infection as an exclusion so her pneumonia will not exclude her.  Even so, she has no symptoms, is being treated with both powerful antibiotics and antifungal drugs and has a rising neutrophil count to rid her of the infection.  But he will be asking for exclusions for her poor cardiac function, lack of sufficient count recovery and the Grade 3 Toxicity resulting from the ileus and thus need for TPN.  I just can hardly take it in.  Monday evening I was practically begging for those T-cells, those cells made just for Allistaire, those cells that may be her last hope, perhaps insufficient to cure, but maybe just to buy her some time for at least more life and maybe for the next step in treatment.

It’s a long shot.  But then again, I look back not just over months but years and I see God’s hand toppling walls, making a way through when there seemed none, holding cancer at bay when it seemed unstoppable, orchestrating so very many circumstances to care for my child.  So many seeming closed doors have been opened.  Man, I have no clue what the future holds.  This crazy life has shown me over and over that you don’t even know how life can change in a flash from morning to night.  I am humbled by God’s gracious hand and I am humbled by the relentless hearts of these doctors who do not stop working to try to figure out how they can help Allistaire.  They rewrote the protocol for this trial last fall to reduce the weight requirement in order to allow young children like Allistaire to have access to these cells.  Dr. Egan went through an extensive process to make it possible for children to actually be given the infusion of cells at Seattle Children’s as before it was only set up for adults to get them at the University of Washington.  Dr. Cooper and Dr. Egan have sent so many emails and had so many conversations trying to strategize on how to open the way for Allistaire.  Even on his vacation, Dr. Cooper has continued to ponder how to care for my sweet girl.  Dr. Leger, the attending doctor, is working in collaboration with Dr. Law and the rest of the heart failure team trying to get Allistaire’s heart in the best possible place.  She connects with the GI team to consider how we might bring about an end of this ileus and converses with the Infectious Disease folks on what to do about her pneumonia.  And then there is our sweet Dr. Tarlock, the very first oncologist we ever encountered, she’s always there in the backdrop, coordinating the details, asking questions, probing for answers.  There are the scores and scores of nurses who draw labs, carefully entering Allistaire’s line many times every day, every time an opportunity for infection.  They put up her meds on the pumps and listen to her little heart, listen for bowel tones, feels for pulses and warmth of extremities.  The CNAs change linens, bring the scale to get her daily weight, weigh diapers and measure throw up all so we can track her fluid intake and output.  They come every four hours to check her blood pressure, temperature and oxygen saturation.  Mohammed and Bonnie are just two of the folks who clean our room and tediously clean the floors, all to rid the Unit of dangers like viruses and bacteria.  Residents like Whitney comb the details of the plan of care, putting in orders, looking for and interpreting test results.  Pharmacists problem solve medication interactions, proper dosing and work with the nutritionists to get just the right combination of electrolytes in her TPN.  Amazing radiologists read scans and radiology techs like our dear Jamie make getting a CT fun and produce a good image.  Dr. Geiduscheck, the cardiac anesthesiologist, carefully reviews Allistaire’s previous sedations and considers a plan and a backup plan to get her through these long scans and bone marrow test.  The pathologist look down at her marrow through the microscope, arrange the Flow Cytometry test and her chromosomes to use FISH probes to look for her MLL mutation.  Sweet Melissa arrives with a wheelchair to transport us from place to place on days with procedures and scans.  There’s also Rosalie the Art Therpaist, Betsie the Music Therapist, Karen and Jeremey on the PAC (Pediatric Advanced Care) Team, Fred and Megan our social workers, and Carrie our Financial Counselor.  This is a crazy long list and I know I am leaving out so many folks whose efforts God has used to sustain Allistaire’s life.  I am gloriously indebted to so many wonderful people, people who don’t just do their job well, but whose hearts and voices cheer us on, wanting and hoping for the best, for a way through.

Today Allistaire was bright, full of joy, dancing in her bed.  She had a little smear of poop in her diaper last night.  I told her we would have a Poop Party when she finally started pooping again.  She told me with the most gleeful voice, “Mommy, I had gas!”  Yay!  What wonderful things!  Callie, the child life specialist came yesterday and played Model Magic with Allistaire much to Allistaire’s great joy.  Today Sierra, the creative writing lady, came to listen to Allistaire tell stories and record them on paper.  Somedays I just feel so overwhelmed with how good our life really is, because it really is just SO full!  It is so radically different from my vision of what I would choose but the truth is it is simply bursting with wonderful people.

It’s a crazy long shot, these T-cells.  Who knows?  They may utterly fail and the end may soon come. But I choose to link fear to wonder, terror to hope, threat of death to a God who overcame death.  There was an Obliteride team with cool blue jerseys, Adaptive Biotechnologies.  I had to look them up. Turns out they do really cool stuff (I’ll include a video below) and started around a cafeteria table at Fred Hutch.  In my search through their website I came upon a video which is the most helpful tool I have found yet to understanding these T-cells that are Allistaire’s hope.  Watch the video.  Don’t skip it.  It is worth every second of your time.  Let your mind be blown, your smile be broad, as you ponder the magnificent intricacies of your flesh, of actions being taken on your behalf a hundred thousand times a day without you even having to ask. My face could not contain the bursting smile of my heart as I witnessed just one wee bit of God’s gorgeous creation.  The T-cells declare the wonder of my God, His wild beauty, His grace toward us.  I choose to link my terror of Allistaire’s death with this God who makes the T-cell.  I choose to yield to Him.  I choose to worship the God of my immune system as the God who gets to choose the path of my life, who chooses Allistaire’s path.  Not only do the sweep of stars above proclaim His glory, but so too here, deep within us, mysteries, wonders, lifetimes worth of exploration and they will continue to elude and excite with their complexity.

(Quick update: as of last night Allistaire had numerous toots and seven poopy diapers!  She ate an entire bag of popcorn yesterday and has had no pain in her tummy for a day, no pain meds for almost 24 hours and hasn’t thrown up since Wednesday morning.  It looks like this ileus may be over and just the need for a slow acclimation back to food and wean off TPN before us!!!!!)

Amazing video on How T-cells Work

Cool video on the Adaptive Immune System and technological advances to understand and harness it!IMG_0757 IMG_0746 IMG_0743 IMG_0742 IMG_0737

Jail Break

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IMG_3589I used to think I was safe, that wild animals, the beasts, the possibility of having my flesh torn off of bones, lay up there, out there, far off in dark mountainous woods.  I thought it would be easy to simply steer clear of such terrors.  As though somehow my own willing of my footsteps could keep me from entering their realm, that by hope, optimism, some silly assumption of impenetrability, it would not be so hard to keep those ravages at bay.  I walked in a sunlit land, blithely believing, perhaps not even believing but never even thinking that they might tear down the hillside at terrifying speeds, absolutely bent on destruction.  They do not see a heart full of hopes, of dreams, of ideas, of lists of yearnings, eyes bright.  Their horrible feet carry them, saliva flinging back behind as their daggers flash, crazed eyes.

Flood waters tearing homes in half, separating husband and wife with children.  Father of Solveig’s classmate, life cut short from heart attack.  Jens on a mountainside.  Nine year old girls sold into slavery by Isis.  Kassidae home from yet another T-cell trial that utterly failed to stop her cancer.

What is it like to have no more options?  How can I fathom a journey where suddenly the road simply ends.  No destination reached, just a faint trail blending into nothing, melding into the landscape.  And then what?  And then what?  Where does one go from there?

I see a small child standing alone in an open space.  Nothing in their hands.  No clothes.  No defense.  Utterly vulnerable.  I stand and watch, unable to move, unable to raise my hand to stop what I know will come, what is coming.

The child shivers, confusion in their eyes.  And then you sense it, before even sound reaches your ears.  Some sort of terrible rushing, some silent invisible foe rushing through the forest.  At last it breaks through the trees, snarling, feet hardly touching the ground as it bolts for your child, savage mouth wide.  And do you turn away?  Can you stand to watch the beast tear into your child’s flesh?  Dare you know the moment their life is extinguished?  How much will be ripped and torn before their eyes go limp and lifeless?

I heard these words in a beautiful song, a song meant to comfort, a lullaby.

“Quiet your heart
It’s just a dream
Go back to sleep

I’ll be right here
I’ll stay awake as long as you need me
To slay all the dragons
And keep out the monsters
I’m watching over you

My love is a light
Driving away all of your fear
So don’t be afraid
Remember I made a promise to keep you safe

You’ll have your own battles to fight
When you are older
You’ll find yourself frozen inside
But always remember

If you feel alone
Facing the giants
And you don’t know
What to do

My love is a light
Driving away all of your fear
So don’t be afraid
Remember I made a promise to keep you safe”

My heart was breaking as I listened to these words.  Hot silent tears slid down as I drove, facing forward, intent on the task of getting there.  “You’ll have your own battles to fight when you’re older.”  But no, no, Allistaire did not get to be older before she had her own battles to fight.  She was just 21 months old when her battle against this ravaging beast first came, intent on taking her life.

“Mommy, I like that part, ‘you feel alone, facing the giants, and you don’t know what to do.”  Her soft sweet voice came to me from the back seat.  Of all the words in all the songs, these are the one’s she speaks out loud, repeats back to me, the words that most resonated with her little girl heart.

You think, unconsciously believe, that as a parent you can protect your child, that somehow, by force of will you can magically keep them from harm.  Surely there is nothing more core to being a parent, to being a mother, than protecting the life of your child.

But my love, oh my love, so fierce, stuffed full with all my might and zeal, my hope…it is powerless to protect against some enemies.  I never made that promise to keep her safe, I just assumed it would be true.  Of course she will be safe.  Of course I can wrap her up in a hug and overcome any giant.

No.  There may come a time where there are no options left and I will hear the rushing of wind through branches as that beast comes tearing through the forest, breaks out into the opening and sinks its wretched brutal teeth into the one I love, this time sparing nothing.  I may be left with my heart bleeding out in the open space, tattered, wounded, ravaged child in my lap, never again to see her bright eyes, never again to hear the most beloved sound on the whole earth, her laugh, her voice full of wonder.

But I know this.  She will not stand alone.  If such a time comes, I will stand with her, hand gripped in mine and I will face that beast with her.  I will not turn away and I will not leave her, and that may be all that I can do.  My eyes will weep until my own flesh is laid to rest.

To Shannon, to Kate, to Susan, to Becca, to Rachel, to Julie, to Beth, to Devon, to you many more mothers who have walked this road, who stood with your hand gripping your child’s as that beast came to devour, my heart weeps with yours and oh how I desperately long for a better day.

For those of you who know that Allistaire was discharged from the hospital almost two weeks ago, these words must come as a surprise.  What you see on the surface is so far from the full story. People constantly comment, “She looks great!”  They ask, “How is she doing?”  How do I answer that question?  On Monday at the playground, after having climbed up the slide twice in a row, Allistaire suddenly said she didn’t feel well, she was panicked and in pain but couldn’t explain what was really happening.  There was terror in her eyes.  I cradled her and hoped she would calm down. Maybe she just overexerted herself a little.  She cried out in anguish, “Mommy,” over and over, yet I could not understand the source of her pain or her fear.  I asked my five-year old daughter, “Do I need to take you to the hospital?” as though she could answer this question.  Was she overreacting?  What was she feeling?  She threw up in the bathroom.  Well, she was on day 6 of chemo and this was the first time she threw up, so really not concerning in itself.  Of course nausea can be a sign of heart failure too. I scan through all I know in my head, assessing her energy, her sleep patterns, her appetite, food consumption.  Could it be her heart?  She continued to freak out after throwing up and we left the bathroom.  “Mommy, can I feel the sand?”  I took off her sandals and gently sat her feet down in the sand at Golden Gardens.  Immediately she calmed.  Immediately she was fine.  What was real?  What is true?  How much of that was based on something of significance?  How much is her just working herself up?  I dreaded having to relay this incident to the cardiologists.  It’s a lovely day at the park, but just below the surface are constant swirling realities that threaten to steal it all away.

In the first days of being out of the hospital, Allistaire and I gorged on our sudden freedom, on sunlight and bird song and starlight and bright moon, on playgrounds and sleeping without interruption, on hours of daytime without nurses and doctors and hospital food trays.  Solveig and JoMarie arrived last Wednesday evening and my heart swelled with the joy of their laughter and heads clustered together in play.  Everyday playgrounds, picnics and beaches, throwing rocks into water and sun glinting off lapping waves.  Caterpillars on fingers and squealing.  My faced beamed with delight, with wonder at simple ordinary life.  How much more wondrous it is than people realize!

You think that leaving the hospital is some signal of victory, of progress, of normalcy.  And so it may be, often is, though not always.  We left on May 18th, not having accomplished what we came to do.  In some ways the girl who left the hospital was worse off then the girl who came to Seattle back in October.  The great victory was that she successfully weaned off Milrinone.  A huge accomplishment which has made way for a few options, far more than none.  But her heart is far too weak to endure a standard transplant for AML which includes TBI (Total Body Irradiation).  So we left the confines of this hospital after 130 straight days, her only moments outside were the 30 seconds here and there strapped onto an ambulance stretcher as she was transported to and from The University of Washington for radiation.  We went straight to the playground.

For 11 of the past 12 days since she was discharged, Allistaire has been to the hospital for a variety of appointments.  On Tuesday the 19th she finished focal radiation to her left leg where one new chloroma (solid leukemia) showed up on her last PET/CT scan.  On Wednesday she saw Dr. Todd Cooper, her new primary oncologist.  Dr. Gardner is pregnant with twin girls and so we are making the transition to having Dr. Cooper, who is the newly hired head of the leukemia department and an AML expert.  He is the doctor that Dr. Pollard had hoped would come to Seattle Children’s.  He has been tasked with developing a High-Risk Leukemia program for Seattle Children’s.  So when Dr. Gardner asked who I’d like to have as Allistaire’s new primary oncologist, it was a no-brainer to ask for Dr. Cooper, a kind man from Atlanta who is a super smarty pants AML doc.  In our first outpatient visit with him, he relayed that Dr. Pollard had called him about Allistaire to make sure he was up to speed with all the details of her medical history.  I cannot tell you how amazingly cared for I feel here at Seattle Children’s.  We are blessed beyond words by the team that journey’s with us.  After seeing Dr. Cooper, Allistaire began seven days of Azacitadine, the same chemo she got last time.

Prior to leaving the hospital, I met with Dr. Gardner and Dr. Marie Bleakley, the transplant doctor we’ve worked with at several significant points.  It was really great to have them both present for the conversation.  Dr. Gardner began with explaining her reasoning for waiting so long for Allistaire to begin chemo again.  I had grown frightened with the incredible amount of time since her last round of chemo, knowing the immense need to keep her in remission and being aware that she was a month beyond the traditional time of starting a new round.  Dr. Gardner stressed that because Allistaire’s marrow has been so incredibly slow to recover, her greatest immediate risk is that of an infection that one: she wouldn’t have the white blood cell defenses to fight and two: that could overwhelm her heart.  So finally, nine weeks after the beginning of the previous round of Azacitidine, Allistaire would begin another round.  She also stated again that given Allistaire’s heart, TBI, known to have long-term consequences to the heart, was not in her best interest at this time.  Dr. Bleakley went on to describe a “midi-transplant” which has much lower levels of radiation (4 centigray as opposed to 12 in TBI) and heavy-duty myeloablative chemotherapy, and a “mini-transplant” with even lower levels of radiation (2 centigray) and non-myeloablative chemotherapy but high-dose steroids.  I’ll forego going into the details of how each of these work and the pros and cons, but suffice it to say, the mini-transplant is not a good option as it is intended to extend life in the old who cannot endure hard-core conditioning.  It is unlikely to provide a cure and has a lot of potential for GVHD (Graft Versus Host Disease).  So while the “midi-transplant” is an option for Allistaire, with a gleam in her eye, Dr. Bleakley had a different proposal.

I left the room with hope.  With fear yes, always there is fear, we walk ever into black, into unknown.  But with hope, with a bit of upturned grin.  Dr. Bleakley has proposed that Allistaire’s best option is to participate in the WT1 trial.  This is a trial through Fred Hutchinson Cancer Research and uses genetically modified T-cells which have a specially designed receptor to bind to the WT1 protein found on 90% of leukemia patients cancer cells.  Normally a bone marrow test would be done to confirm expression of the WT1 protein in the cancer cells, because if it is not present, the receptor is useless.  However, because Allistaire has not had any detectable disease in her marrow since she relapsed in October, they decided to proceed without this info for now.  At the end of this round of chemo, she will have another bone marrow test performed and if there is disease, they can then test for the WT1 protein.

So far 17 people have participated in this trial.  Of the people who were in remission going into a bone marrow transplant and remained in remission leading up to getting the modified T-cells, 100% have remained in remission for over a year that they have been followed so far, this in light of a normally high relapse rate post-transplant.  There are two people who relapsed after transplant and then got back into remission and then received the modified T-cells.  This is the arm of the protocol that Allistaire would fall into.  I believe I was told these people are also remaining in remission. The remaining group relapsed after transplant and did not get back into remission and despite having the T-cells are not doing well or have already died.  It seems the T-cells work best when there is little to no detectable disease.  We will know the state of Allistaire’s disease after we get results from her next set of tests around June 16th.  How I pray she remains in remission, but she has been receiving very mild chemo and has gone great lengths of time with little to no defense.

What makes Allistaire unique in this trial, is that, should she be able to get these TCR T-cells, she will be the very first child to do so.  I will have to ask again if this is being done anywhere else, but she is certainly the first child ever to have this sort of therapy here (Seattle Children’s/Fred Hutch).  There are many kids with ALL (Acute Lymphoblastic Leukemia) who have by now received modified T-cell therapy.  But the targets are quite different.  In Lymphoblastic leukemia, the cancer is in the B-cell line and CAR (Chimeric Antigen Receptor) therapy is used to destroy the cancer and in doing so, it forever destroys the patients’ B-cell line, requiring life-long transfusions of Immunoglobulin.  The first child ever to receive this therapy was a little girl named Emma in April 2012 at CHOP (Children’s Hospital of Philadelphia).  She has remained in complete remission since then.  Seattle Children’s Research along with the Ben Towne Foundation has provided this therapy to a growing number of children with great success.  People are coming from around the world for this treatment.  A month ago I met a woman named Solveig from Germany who was here with her son, Nicolas, who was getting CAR-19 T-cell therapy.  Allistaire’s cancer (Acute Myeloid Leukemia) is found on the myeloid line – cells that you cannot forever destroy and rely on transfusions for, cells like red blood cells, platelets and granulocytes.  Thus the scientists have needed to find another way to attack these cells.

The folks at Fred Hutch have been incredible.  I am amazed, honored and humbled by their passionate desire to make a way for Allistaire to participate in this trial.  Through conversations with Dr. Bleakley, Dr. Dan Egan (the principal investigator on the trial) and Dr. Phil Greenberg (the head of the lab who has designed this therapy), it is so abundantly evident that they see Allistaire as an individual and they see her as the child that represents the children who are also in desperate need of this therapy, children who have run out of options, children “destined to die of their disease.”  They have re-written the protocol to accommodate her, to make way for future children.  The original weight requirement was 30kg because of the numerous blood draws required for testing.  They worked it out to reduce the limit to 15kg, Allistaire was 17kg at the time they made this change.  Additionally, because this weight change equals treating much younger patients, they went through a lengthy, involved process to set up approval to give this therapy at Seattle Children’s.  Up to this point, the youngest patients have been in their teens and were treated at The University of Washington where adults are treated.  They have worked hard to make a way through for my girl.

On Sunday evening, May 17th, I was delightfully honored to be invited by Julie Guillot to the Premier Chef’s Dinner, a fundraiser for Fred Hutch.  As I have mentioned before, Julie and her husband, Jeff, lost their son Zach to a complication of his third transplant for AML.  At that time they were helping fund the research that would create T-cells that would give Zach another measure of defense against AML.  When Zach died in February 2014, Julie’s zeal and wild fiery passion to bring an end to AML and better treatment options, only intensified.  When Allistaire relapsed in October 2014, she invited Allistaire and I to a little party for Dr. Greenberg’s lab to celebrate the $1.7 million dollars Julie and Jeff had helped raise for his research thus far.  It was at that time I first met Dr. Greenberg in person and introduced he and his lab staff to Allistaire.  Jeff and Julie were the challenge fundraisers for the fundraiser on May 17, 2015, having pledged to match up to $400,000 of money raised that evening.  In making this commitment, they were given the privilege to direct where the funds would go.  Their whole motivation was to see the immunotherapy through Dr. Greenberg’s lab flourish and accelerate.  By the end of the amazing evening, $1,280,000 was raised to accelerate targeted cellular immunotherapy research at Fred Hutch.   I had the joy of standing up and representing the hopeful first child to benefit from his research.  Dr. Greenberg spoke to me on two different occasions during the evening, each time with multiple hugs initiated by him.  You could see the eager joy and hope in his eyes.  It was a wondrous thing to stand alongside a man who has dedicated several decades of his life to this research, generous donors, a fellow cancer mom who lost her son – for whom this therapy is coming too late, and I, the mom of a child who is desperate now and who needs this treatment immediately.  The full circle was there – scientist, patients, donors.

Doors are opening but still the tension remains high-pitched.  There is the illusion of normalcy, there is light-hearted laughter on the surface, but there is a mighty undercurrent, ever threatening to pull Allistaire down, deep into the suffocating dark.  First financial approval for the trial was required which was confirmed by Blue Cross Blue Shield of Montana this Wednesday.  This allowed the Unrelated Donor Search Committee to initiate their part which is to request Allistaire’s original donor to be contacted and for a request for consent to use remaining donated cells for this trial.  At this point, unlike the CAR t-cell trials, the WT1 trial must use bone marrow transplant donor cells.  While Allistaire is not in a position to get a transplant at this time, she thankfully does have cells stored at Fred Hutch from her original donor from her transplant in June 2013.  Extra cells are stored for two years at no charge and then you have the option to pay to have them stored.  This June 18th, will mark two years.  I pray this woman can be found quickly, quickly and that her heart will be moved again to give, this time solely of her consent.  It feels sort of terrifying to know that Allistaire’s one shot is dependent on a woman on the other side of the world, but then again, she gave once in a much greater way, we so hope she will help make a way through for Allistaire again.  If we can gain her consent, processing of the cells will begin and takes approximately a month and a half.  Speed is of essence.  The T-cell therapy much be coordinated with Allistaire’s chemo schedule.  It is my great hope that there may be a way for Allistaire to get these cells prior to needing to begin another round of chemo.

This therapy could be Allistaire’s cure.  That would be BEYOND AMAZING!!!!  And if not a cure, we pray the T-cells will buy her more time, time for her heart to heal, time for her heart to gain strength to enter the next battle of a second transplant.  What’s so wild to me is that Allistaire would be inpatient for ONE day for this therapy.  ONE DAY!!!!  And this T-cell therapy does not result in the intense cytokine storm response as it does in the CAR T-cell therapy which puts most kids in the ICU for some period of time.  No one in the WT1 trial has had to go to the ICU.  In fact, Dr. Gardner told me that Allistaire would not be able be eligible for the CAR t-cell therapy because of the extreme dangers it can pose.  For the WT1 trial, they would ask her to stick around for a few weeks for some blood draws and observation and then remaining blood tests could be done at home and simply mailed over to Fred Hutch.  It all seems too good to be true.  What a wondrous world it will be when this is the way cancer treatment is conducted.  Can you even imagine?!  I must highly, highly recommend the documentary, “The Emperor of All Maladies,” by Ken Burns!  It is based on the book of the same name which is also extremely fascinating and worth reading.  It is simply thrilling to see how far cancer research and treatment has come and the heightened hope that immunotherapy will change the course of how cancer impacts our lives – for one in every two men and one in every three women who will get cancer at least once in their lives.

I am weary, so utterly weary.  But what choice do we have but to walk on?  And we do.  We walk forward, giving thanks for so much blessing.  Sometimes it feels like there being a way through for her is an utter impossibility, but then I am reminded of how many “impossibilities” have come to pass, how the insurmountable has been overcome.  My yearning for her life is like a burning fever that never lets up.  Every moment is on high-alert, racing through the myriad of questions to try to determine how she is doing, to assess what is going on for her.  There are now so many interwoven layers of medical complexity and reality.  There is cancer, there is heart failure, there are medications (13 different ones every day – 26 doses), there is being deconditioned by months lived in the cramped confines of the hospital.  I see her on the play ground and I watch kids younger than her charge a hill or climb with confidence.  She tires quickly, she is fearful.  Her legs hurt.  Is it cancer on the move?  Is it lack of blood getting to muscles?  Is it simple fatigue brought on my muscles that have not been asked to do much in so, so long?  Is she nauseous?  Is it from chemo?  Is it from the magnesium she must take because her Lasix makes her waste it, magnesium that causes tumultuous abdominal cramping?  All her pain signals are mixed up so that she just finds herself in a frenzy of discomfort, in a frightful maze desperate to get out but with no clear direction.

Leaving the hospital balloons the craving for normal, it makes you think you should be normal, all the standards shift and you see your child not as one among the many other sick kids but among the normal.  At the same moment that I am delighting in the warm day and Allistaire playing in the sand, going back to the lake shore to fill her bucket again, I am aware of the dangers in that sand, in that water.  I’ve put parafilm on the end of her tubies and tucked them tight into her swim suit.  She wears her sun hat and is lathered in sunscreen.  Her medications make her more sensitive to the sun, more likely to burn.  I’d like to avoid skin cancer.  She doesn’t know what to do when the other little girl approaches silently to play with her and share her toys.  She is fearful and defensive.  My heart sighs knowing how little interaction she’s had with other children, how to navigate such situations.  In her cardiology appointment the great nurse, Jason, calls her precocious.  Yes, yes, she seems to be quite articulate for a five-year old.  There are ways that her deficits are glaring and there are odd ways that she has walked so much further in life than the vast majority of five-year olds.  What I know is that I love her dearly, I long to keep her safe, to see her have long life.

I pray to God, I seek to be reminded, imbedded in the truth of His infiniteness.  I ask Him to remember that I am finite.  I ask Christ to pray for me as He prayed for Peter, that my faith would not fail (Luke 22:31-32).  I ask Him to help me to lift my eyes, to take in the long view, to help me in this brutal moment, these series of endless days, in this tedious fight against cancer, in this relentless tumult to see His face throughout all these circumstances.  We go to the playground.  We look for the first stars at night, our necks craning back.  Alllistaire points eagerly at the moon, not framed in the hospital window, but in the vast expanse of the evening sky.  We listen for birds and bend our noses to flowers.  Our feet follow little paths through marsh land and cat tails, spider webs bright in the afternoon sun.  We live, we delight.  We go to the hospital again and again into little rooms with blood pressure cuffs and vials of blood that tell of the world within which eyes cannot see.  We walk forward through this intertwined life, messy, unclear, wondrous, of such enormous precious value.  We give thanks to the Lord and ask for more.IMG_3470 IMG_3483 IMG_3588 IMG_3591 IMG_3597 FullSizeRender-6
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Help The Hutch 2015-355-(ZF-8131-68186-1-002) Help The Hutch 2015-486-(ZF-8131-68186-1-001)

Lyrics above are from J.J. Heller’s song, “Keep You Safe.”

Roar

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IMG_3369Often music fills my ears, pushing back, pushing out the distraction of sounds around me, pulling my thoughts inward, attempts at gathering all the scatter into some sort of coalescing.  Today the gray-green waves of the Pacific roar relentlessly.  A sound of static unceasing, pleasing perhaps because of the immensity of its raw power, the deep core knowledge that this is water, this is the essence of the earth expressing itself, that monotony that is staggeringly beautiful, from which you can hardly turn away.  A line of dozens of surfers bob like black buoys waiting for some moment indiscernible to me, waiting to launch into those few seconds of thrill before the white ferocity takes them down.  Eight pelicans, one behind the other, skim the surface, effortlessly, lazily.

The still quiet of my home in Montana knows nothing of this clamor, just shocking liquid quiet punctuated here and there by bird song.  Perhaps in storm the land sings with ocean, clouds fill the valley making their way up the canyon with surprising swiftness, the wind proceeds them, the trees bending from the power and the constant rush of air through millions upon millions of evergreen branches, aspen leaves shuddering, flashing.  There is that thrill, that giddiness to witness such power, wondrous terror that nothing can stop what’s coming.  And so the waves reach for the shore, again and again, a longing never satiated.

I have wondered, would I like to live near the sea?  No, sea sounds too pretty, too small and timid and kind.  This is ocean.  This is a vastness and an infinitude to give the word some beginning of meaning.  This is force unyielding.  There is absolutely no letting up.  Would that sound haggard me?  Would its backdrop to every day and every action invigorate and calm or fatigue, cause restlessness, unsettledness?

This is our life, a pounding raw power that never lets up, is always, ever-present.  Cancer, and now heart failure too, have been the backdrop to every day and every action for nearly three and a half years.  The relentless static ever demanding to be heard threatens to swamp every view.  We dared to plan a trip to San Diego, a chance to finally get away and take a break.  Canceled plans, thwarted hopes, desires cut short – these have marked us.  But there he is, Sten on the beach below the hotel room, black wetsuit and blue board receiving instruction and soon to paddle out into that fierce green fray, lit now like liquid precious stone by sunlight breaking through clouds.  The contrast of breaking waves, white, so strangely satisfying.

Allistaire’s life, ever tenuous, overlays all thoughts, undergirds all visions of future.  All seems well.  You sleep in comfy bed, you eat tasty fish tacos and then there it is, because it has always been there but something causes you to tune into that roar, that relentless pounding of cancer like the wolf threatening to blow your house down.  The barbs of cancer puncture and sorrow seeps into those lacerated places, saturating the tissues.  Now there is another layer, another strata of sorrow, ever-present, silent but pounding, roaring its reality into unnoticed places.  Jens is dead.  We repeat it to ourselves in disbelief.  I saw his body laying there on the table, clothed in plaid flannel and dirty Carhartts, a most common image.  “They didn’t do his hair right,” Jo exclaims through tears, lovingly running her hand through his hair, “he never did it that way.”  A sad smile because Jens really never did do his hair, that’s why it doesn’t look right.  I held his hand and felt the shocking cold of his arm under the shirt.  I told myself, this is Jens, he is dead, he is dead but I could not fathom it, I cannot fathom it, I don’t know how to take it in!  We sit, we walk and there suddenly we are confronted with something that brings Jens rushing to our minds.  We stare at the amazing stretcher from the ambulance, awed by its engineering design and there is Jens.  We walk down the sidewalk and see the “corn hole game” and there is Jens.  We hear Dave Matthews in the restaurant and there is Jens.  Someone mispronounces Sten’s name, I correct and go through the list of the four brothers with the norwegian names and there is Jens.  I send out a group text to give an update on Allistaire and there is Jens.  My husband’s green jewel eyes fill again and again like pools, and there is Jens, Jens.  His sweet brother is gone, gone.  His name pounds through our hearts, punctuating our days endlessly.

I don’t know if I can live with this unceasing roar.  I feel desperate sometimes, wild with the desire to use my wee force to make this all stop, turn around, never come this way again.  We have no choice.  It is unyielding, it is a reaching, a groping that will never be satisfied, not in this life.  We will never again hear Jens’ voice in this life, nor see the green of His eyes, the eager excitement in his story telling, the silly contortions of his face to make us laugh, the gentle tug of pulling Jo into his protective warm chest, the wrestling with how to live out his days – his desire for satisfying work and play.  Oh dear Jensie, I cannot comprehend that you are really never again going to walk through the door.  Surely you are just away, or more likely, I am simply in Seattle with Allistaire and you will visit or I will see you when I get to come home again, you will walk through the door for one of our big family get togethers, arms loaded with tasty food.  You will join the circle of your brothers, beer in hand and I will stand back and take in with swelling satisfaction the joy of our family together, the hope of more little kids.  But I saved all the baby stuff.  I saved it for YOU!  For you and Jo.  I wanted to see those sweet little clothes that encircled the bulgie flesh of my two little girls, on your children.  I couldn’t wait to see what they’d be like.  I have imagined you Jens over and over, holding that new warm bundle of life in your arms in awed amazement, in wonder at what you and Jo had made, Jo next to you looking on, equally rejoicing in a new little life and seeing you as a dad.  For you Jens, were to be such a sweet, sweet dad, full of joy and play.  And it is not to be and what is Jo to do with those bags of clothes, of baby gear I thrust on her?

There now, just to the side, in parallel to the bright thread is now the dark.  Every remembrance is dual, joy and pain.  Jens is dead.  There is now no hoping, no imagining his future.  There is only sadness of what might have been.  Allistaire’s future remains ultimately unknown, though there is already cost, already deep gouges in her flesh that cannot be undone.  On a Wednesday we sat huddled together on the couch at Sten’s parent’s house, Jo and all her family, the Wilsons, and all of Jens’ family, we the Andersons.  We gathered to draw together tales of Jens, bright threads of his life intertwined with ours, sorrow and joy all tumbled together.  I sat on the edge with the phone shoved up against my thigh, ever aware of its presence, that its ring might suddenly clatter into this sacred space, slicing, and telling us what is to come.  Hours passed with no word from the doctors, despite knowing that surely by now her PET/CT was complete, results would be back and final results from her bone marrow biopsy should also return soon.

When our time of remembrance wrapped up, I shut myself in Lowell’s study and sat on the carpet as close to the heater as I could get, right up against the window, staring out, watching the slow consistent fall of snow.  The day before had begun with sun and sixty degrees and then the evening turned windy and fat flakes began to fall.  All through Wednesday the snow fell.  I sat with apprehension, knowing that at any moment the next twist in this journey with Allistaire would be revealed.  I sought to prepare my heart for what might come, to see the news as from the hand of Christ.  For I believe in God who determines all of our days before one of them has come to be, God who holds all of our life in His hands.

But it gets messy see?  I seek to follow my finite mind, a trail, a nubby fiber of reasoning and it all gets mucked up.  Did God cast Jens off that mountain?  Does God command the swirling rotation of electrons around the atom’s nucleus?  Is He Lord over atom binding to atom to form molecule, joining countless others to form the cell?  Does He declare, “here your proud waves halt?”  Does he pour forth the snow from its storehouses?  Does He count the number of hairs on my head?  Is He alert to my every rising up and laying down?  And what of another head sliced off by Isis, another body rotting away from Ebola?  Where is God in these moments?  Is He God?  What sort of God? Is it His prerogative to decide if and when cancer finally gnaws away Allistaire’s life?  Is He good?

The snow falls and I wonder.  What if it’s all just a bunch of crazy talk?  I’ve read the Bible, I know.  There are wild tales there.  Mysteries.  Paradoxes.  Seeming contradictions.  Countless questions left unanswered.  Answers that make me twist and arch in discomfort.  What if there’s no point at all, simply an incredible accumulation of mutations over eons resulting in a staggering fancy arrangement of atoms?  Who cares then?  What is Allistaire’s life?  Its loss is only sadness.  And what is sadness?  An illusion?  Another blind accomplishment of evolution, a component of survival of the fittest to get me to fight for the life of my offspring so my species can go on?  Is my love mere firing of neurons?  And what of Jens?  Was he just dust laying there on the table, soon to go back to join the rest of the earth to one day become a blade of grass, energy produced as the bonds of atoms burst in that furnace burning up his flesh, to go up and join the energy of clouds and wind and light?  Is Jens simply a molecule in the scale of the fish I will eat?  But where was Jens when that body lay on the table?  For he was not there.

The snow falls and I wonder and I feel sick to my stomach.  What is the point of all this, all this agony, if all she is is a bunch of atoms?  Let her go, let her go.  Walk away.  It doesn’t matter anyway.  It’s all illusion, all dream, all for what?  But I cannot go there, the very fibers of my being rail against that view.  I have seen beauty.  I have learned of kinase inhibitors, of heart muscles beating in unison, of atoms seeking electrons to at long last be at rest.  I have looked into Allistaire’s blue eyes flashing with delight.  Jens was no longer there, just beautiful, beloved dust.  I choose one unprovable over another.  I have seen the Lord.  I have heard His voice.  I stand with Job, having tasted a bit of loss, and I yield to the Lord and allow Him to instruct me.  The waves pound the shore.  The ocean speaks of the depths of God’s love.  The sky, as far as the east is from the west, speaks of His forgiveness.  Mountains fall into the sea at His voice, declaring His power.  The stars in all their vast infinitude, well, He calls them out one by one.  I smile.  My heart yields and I stand in awe and I know that when the day comes that I see Jens again, I will have first fallen on my face in adoration, in delighted submission to the God of the Universe who orders my days.

I walked down the hall into the kitchen where folks were about to head out to another family gathering in this week of sorrows, of mourning.  In that moment I was struck with the shocking suddenness and swiftness of Jens’ death, those sixty startling seconds.  I was struck by the contrast of that quick death with the nearly three and half years that Allistaire’s life has hung as by a mere thread, numerous times dangling over seeming insatiable jaws of death.  There is no leukemia in her marrow, I tell them.  No detectable cancer in her marrow and all of the six previous spots of solid leukemia as seen on PET/CT – gone.  There is only one small new spot of likely cancer.  A 1 cm brightness on the scan shows up on the outside of her left leg in the soft tissue.  The doctors are shocked.  With her ANC plummeting to zero, they assumed they would find a marrow packed with cancer.  But no.  Again her life is sustained against all probability.

After I return to Seattle, a biopsy confirms the spot in Allistaire’s leg is cancer.  Last Thursday, with giddy excitement, Allistaire was transported by a critical care ambulance to the University of Washington for a radiation simulation and consult with Dr. Ralph Ermoian.  Her leg may be deformed in terms of its long-term growth.  It may end up being shorter than the other but radiation should be effective at eradicating the cancer in this location.  Of course any part of the body exposed to radiation is also more likely to become cancerous down the line.  The barbs snag against our flesh, but we are well acquainted with such stings and give the warnings no attention.  Allistaire is set up in the CT machine to line up her leg and create a foam form around her leg and foot to keep it precisely in place during radiation.  Lines are drawn along her shin and upper thigh to align the lasers and two tiny jail-house style tattoos are etched into her knee, needle dipped in ink and scraped into tiny dots.  She screams and trembles in fear.  How many times have I had to tell her, “I know it hurts, I know it tastes yucky, I know it is scary, but we must do it, we must, or child, you will die.”

Radiation will begin on Wednesday when Sten and I return.  The hope is that Allistaire can make it through all of the ten days with no sedation.  She will be alone and must stay totally still for approximately five minutes “in the vault” each day, with several 30 seconds blasts of radiation.  It will be wonderful if she can do this without sedation.  While the three episodes of cardiac anesthesia (for her bone marrow biopsy, PET/CT and biopsy of leg) went great, sedation does pose its problems for the heart, specifically in reading the signs of how well the heart is functioning.  Each sedation brought lower blood pressures and an increased BNP.  Sedation requires no eating for long periods of time, impacts energy and can increase nausea.  The cardiologists feel that Allistaire is very ready to wean off of her Milrinone and have been eager to give it a try.  But sedation would confuse all the indicators of how well her heart and body would tolerate the wean.  They decided to turn down her Milrinone from .3 to .2 on Saturday and will keep it at this dose until after radiation on Wednesday.  If she does well without needing sedation to stay still during radiation and the wean of Milrinone appears to be going well, they will then turn her down to .1.  Today’s echo showed an ejection fraction of 31, down from the last one of 34 which was done from the prior at 38.  Each three of these echos the cardiologists say look essentially same, but boy what I wouldn’t give for better numbers.  Exciting times and nerve-wracking times.  Times of ever waiting.

If you walk in the Allistaire’s room, you will encounter a sweet-eyed five-year old girl bursting with joy and life and an insistent plea that you play with her.  What you see is the vibrant life of a girl we are so passionate to save, but there are happenings below the surface that constantly reveal another story.  She tested positive for C-Diff (Clostridium difficult), a bacteria in the gut, which has meant she’s been not only in ordinary contact isolation, but now contact enteric which means she hasn’t been able to leave her from for the last two weeks.  Her course of antibiotics wrapped up yesterday and if she remains symptom free, she will likely be allowed to roam the halls in a few days.    We hope she can fully get over this as sometimes C-Diff can be pesky and keep coming back.  Her other challenge is that her marrow has been incredibly slow to recover.  It finally did recover from her heavy-duty round of chemo that began in January but with this most recent round of chemo about six weeks ago, her ANC plummeted from nearly 1,700 down to 8.  The chemo she received, Azacitadine, is not supposed to be very count (marrow) suppressive but clearly her marrow has just been beaten down so relentlessly.  The major problems with this is that it means her blood counts aren’t recovering well enough on their own, resulting in continued red blood and platelet transfusions which tend to be hard on the heart (they are a big fluid increase and the fluid is heavy/dense).  Also, with such low white blood counts, she is far more vulnerable to infection of all kinds and it takes far longer to get over infections.  On top of it all, Allistaire still has cancer that needs to be warred against.  It has been six weeks since her last round of chemo began which means she’s two weeks past when she would normally begin another round of chemo.  The door to cancer cells has been left wide open.  She needs chemo.  She needs her marrow to recover.  It is all such a delicate balance and requires decisions to be made with no guarantee of outcome, just hope, hope.

The most recent bomb dropped on us unintentionally came when Dr. Ermoian talked to us about radiation.  He referenced the conversation he had with Dr. Gardner about the pros and cons of this focal radiation.  He mentioned that she said Allistaire would not be able to get TBI (Total Body Irradiation).  My mouth dropped.  My heart dropped.  Heat clamped down on the back of my neck.  Allistaire was not able to get TBI in her last transplant.  It is a core part of her hope to finally be cured of AML.  It can have long term serious consequences for the heart.  Oh God.  Here we are again – your most powerful weapons to kill the cancer are the very weapons that will in turn take your child’s life.  There are no letters to sound-out the agonizing wrathful rage and sorrow I feel at this plight.  I want my child to LIVE!!!!!  Then Dr. Ermoian says that it is not even clear how effective TBI is in the long run.  Dr. Gardner’s words from months ago come flooding my mind, “We like TBI so much we give it to babies.”  Her point was that they so believe in the worth of TBI that they even give it to infants – to infants!!!!  Do you know what TBI is?  I will quote again what the Fred Hutch website says, “it is like being near the epicenter of a nuclear blast.”  Your baby, my little girl, intentionally placed near the epicenter of a nuclear blast?!  Would you ever do that?  You would, you would if it was your only hope that your child might live.  But what wretched, agonizing choices, not really choices at all.  You may be weary of me asking you to give money to cancer research.  But I’m going to ask you again, if you haven’t already, would you consider giving to Obiliteride? Obiliteride is a fundraiser where 100% of donations go directly to cancer research at Fred Hutchinson Cancer Research.  Donate HERE.

I have been so thankful for Jo’s heart in the face of losing Jens.  My heart and faith have been encouraged as she has sought the Lord, His directing, His holding her up, His provision.  She has determined to be on the look out for what He will do, what He is up to.  Her fight has only just begun.  These days I have felt so weary, circling endlessly in this eddy, little to no seeming progress forward, no end in sight.  Mine has been a choosing to lift my eyes to Christ for three and half years.  Jo’s soaring spirit admonishes mine to look back over the bounty of God’s provision, of His faithfulness, of His words etched into my heart over these years.  And really, Jo’s fight to have eyes to see the Lord did not begin on April 11th with Jens’ body hurled over cliffs, nor did mine begin with Allistaire’s diagnosis.  No, long before these days, in long years past, a seed was planted and the root has gone down.  Our thirst for our Father, a scanning the horizon of our days for His face, came long before.  Do not wait for tragedy to seek His face.  Determine to seek Him now.  Thirst.  Hunger.  Yearn.  I believe lie when I live in wait for my circumstances to line up with my desires for how my life should look, waiting to truly live, to know rest and satisfaction.  The Lord IS my life!  The Lord IS my dwelling place, my home.  My Father is my sabbath rest now, now!

With Jo’s permission, I have copied below her words from Jens’ memorial service and a link to the video of the service HERE

“Jens.
 A single. Mighty. Syllable. Four letters that align so solidly beside one another, providing a foundation on which to build a life, develop character, cultivate relationship, grow ever more in integrity.

Jens.
 A name woven deep into the tapestry of my soul, your fibers reinforcing my own at their weakest places and adding depth and beauty to my places of strength.

Jens. Jens. Jens.
 I hear your name with each beat of your heart and with it I am transported, whisked away to cold, foggy early mornings in the Lamar Valley of Yellowstone, peering with anticipation through darkness as we wait for the first signs of dawn to show itself. Another heartbeat and I sit in the passenger seat of the 4-Runner as we bounce along dirt roads of Montana, nowhere to be but right where we are. My heart beats again and I find us snuggled in the tent perched high in the mountains, your face lit up as clear as day with each bolt of lightning that cracks above us, your eyes gleaming, awed by the display of power and beauty of our God. Another thump of my heart and I look over my shoulder to see you flex your strength against the waters, navigating the raft down the river or the canoe through the lake, you tirelessly paddle and steer as you smile back at me. My heart beats and we wake up and our eyes meet – we both smirk and shake our heads in wonder of the ball of black and white fur that so masterfully weaseled his way between us in the night – Peyto Dog was ever faithful in keeping tabs on his pack, even as he slumbered. Another beat and you’re making popcorn, pouring copious amounts of butter over the top. The next beat sends me to the garage where I serve as your third and fourth hands as you skillfully craft another beautiful wooden piece with those rough, weathered, hard-working Yensie hands. Another beat and we’re gathered around the table at your parent’s house, everyone talks and eats and talks some more. I find you on the couch or in the hammock reading, another Ivan Doig book down, another rich classic finished. I find myself on skis, skinning up a glistening, iridescent blanket of snow off the Teton Pass, following you and Peyto Dog up, up, up… and surfing the deeps back down again. I see you crawling around endlessly on your hands and knees, a thick furry blanket over your back as you delight Allistaire with your bear grunts and tickles. I walk around beside you around the park at night in the cold, your big red hat covering your head, every now and then a wisp of smoke rises as you puff your pipe. I find you lying on your back, head in a cupboard, fixing a leaking pipe, repairing the garbage disposal, troubleshooting the dishwasher that’s on the fritz. You come to bed late the night before a backcountry venture, waxing skis, ensuring you’ve packed appropriately, pouring over weather forecasts, condition reports, and the next day’s terrain on google earth just one more time before you rest. Another heartbeat and you‘re in your fleece trout pajamas being the goofy guy I so love, making up silly dance moves and striking poses, all to see my face light up and hear laughter pour out. Another beat and we’re sitting around the fire, watching for hours as the embers dance their way to the inky, star-studded sky. I blink and the night sky is still there, but the dancing embers have been replaced by the mesmerizing green + gold + white dance of the Northern Lights in Norway…

These heartbeats and moments in time continue on and on and on, filling me with memory of you. Other heartbeats are shocking, excruciatingly painful, visions of what could have been, working through the complexities and beauties of this life as we would have grown older together… these beats are unavoidable and meaningful, our unfulfilled dreams that will hang in the balance.

I press my ear to your chest, hoping to hear and feel our heartbeats align. Yours is a mighty, sure rhythm, the metronome stomping out a rhythm for your life. Oh how I marveled at it… this steady beat was at the center of all other creative rhythms you so incredibly pounded out – whether on pots and pans as a young boy, the steering wheel on road trips, the drum set in the northeast corner of the house, or as you poured out yourself on Sundays. Days you played at church I would intentionally show up after the music had already begun as I so loved pulling into that parking lot and stepping out of the car and hearing the only audible noise from inside filling air: Yens stomping out a rhythm on the bass drum, an extension of your wildly loving heart, pumping life through your body, through our family, through this community and beyond as you gave yourself with abandon to worship the Giver of all Life.

My heart has been privy to gentle whispers over the last decade of life… the first, before I knew you well, was God’s soft nudge and raising of my eyes to see you as he said, “That’s HIM”, something I never told you until 4 years later and we were husband and wife. My heart also endured a recurring dream over the last couple of years… I was always spared details about what took your life, but found myself widowed due to a ski accident, a burden that always fell to Peder to relay to me. I had this dream, this preview of life to be lived out without you by my side, and though it pained me so, it brought no anxiety. We would talk about it and you always refocused my vision, for you firmly believed that your task was to live fully vested in each day, deeply committed to taking responsibility for your actions to best preserve your life + the lives of others. The rest was up to the Giver of Life, who numbered your days before he fashioned your large cranium, wavy blonde locks, green eyes, and heart of gold in your momma’s womb… when this day came, it would matter not what you were doing, you would be ushered swiftly from this earthly realm to the feet of our Christ, our King. When the avalanche report came out detailing your accident and producing the exceptionally rare statement that there is, essentially, not a single explanation for what occurred on April 11th, my heart somehow found rest in that this was the day I had been prepared for over the last couple of years.

Your above and beyond efforts to be safe in the backcountry – from obtaining your Wilderness First Responder and Avy 1 certifications and rereading through your course materials a couple times every season to the so-called “over packing” of extra first aid and survival items – has preserved the lives of your brothers and friends over the years, and for that I am exceedingly grateful.

As my heart beats on, flashing through fifty-some treasured memories and painful dreams a minute, I have yet to hear it muster “Why God?? Why now? Why my Yens??” …Instead, all I hear is the persistent inquiry, with a tone of expectation, “What are you up to, my King?” For God, you still sit enthroned in my heart and in the heavens and beckon me to love you more deeply… and you even sweetened the deal, at Yens’ request, I’m sure, by gifting me with seasonal favorites of mine, heaps of spring snow followed by blue skies and radiant spring sun, both of which bring such promise of renewed LIFE. I’m on to you, Lord, I see you moving and shaking, and extending such Love, that same wild love that brought such vigor to the heart of my grizzly bear.

So… I implore you who listen in today, on behalf of my best friend, my love, my sweet honey: slow your selves long enough to picture the four chambered organ just beneath your sternum, a perfect + harmonious balance of electricity, chemistry, pressure, and tone, a gift with at, without any conscious effort on your behalf, send the gift of life throughout your body to sustain you. WONDER. MARVEL.

Jens’ big, giving, powerful heart beckons me and you to march onward in his wake, embracing the grace and freedom he wrapped his life around, to continue to stomp out that rhythm that we’ll hear the most loudly when the thunder clouds roll in and Yens takes to his drum set in the sky and makes a mighty ruckus with THE KING.

You are dearly loved, deeply revered, immensely missed by a greater group of people than you would have ever fathomed… I cannot wait to look you in the eyes again, see you smile, and fall on my face beside you in worship at the Throne of Grace.”  (Written by Jonell Anderson for her husband, Jens’, memorial on 4/18/15)IMG_3254IMG_3102 IMG_3109 IMG_3119 IMG_3163 IMG_3193 IMG_3200 IMG_3201 IMG_3202 IMG_3211 IMG_3227 IMG_3232 IMG_3234IMG_3237 IMG_3257 0419151428 SubstandardFullSizeRender SubstandardFullSizeRender-2 IMG_3292 IMG_3299 IMG_3320 IMG_3325 IMG_3322 IMG_3323 IMG_3331IMG_3335 IMG_3336 IMG_3337
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Tragedy

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

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

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

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

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

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

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

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

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

Hebrews 11:1-3 & 13-16

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

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

Post started last week:

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

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

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

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

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

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

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

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

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

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

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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

 

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

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

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

 

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.

 

Wait and See

Standard

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