Monthly Archives: May 2015

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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