Tag Archives: Dr. Soheil Meshinchi

Jul1

Seven Years, Three Years, Seasons

Posted on July 1, 2019 by Conglomeration of Joy

I know it is redundant, I’ve spoken of it before, but there are just those points about which your mind continues to circle back to, the strange attractor. In the afternoon of Friday, March 11, 2011, a 9.0 magnitude earthquake occurred, centered “about 45 miles east of Tohoku, Japan, at a depth of about 15 miles below the surface.” “The quake occurred as the Earth’s crust ruptured along an area about 250 miles long by 100 miles wide, as tectonic plates slipped more than 18 meters, said Shengzao Chen, a USGS geophysicist.” The result? The earthquake moved the main island of Japan 8 feet to the east, shifted the earth on its axis by an estimated 4 inches and sped up the rotation of the earth by 1.8 microseconds.

How could such a thing occur, such a radical shift with mind-boggling results? “The temblor (earthquake) completely released centuries of built up stress between the two tectonic plates, a recent study found”

As of yesterday, June 30th, I have lived in Montana, for the second time, for seven years. It has been just over three years since Allistaire died. For the passed six plus months or so, there has been a building tension, a weariness more and more intensified, the layers of pain and loss compressing down. My cry of lament to the Lord has been a pleading to bring this season of loss and sorrow to a close. Can we please be done with this Lord? Can you please bring me into a new season, a season not marked by loss and sorrow and deep loneliness? Many times I have sat across the room with my clients who ask me with plaintive, pleading eyes, the searing question that resonates in my own being, why should I go on with this overwhelming pain? If this is all there is, why can I not just die? The sorrow, the loss, the betrayal, the empty, the radical deep loneliness of feeling cut off, cast out and pervasive, cellular, visceral not-belonging. The small room swells heavy with the questions, honorable questions, questions with the grit and scouring of reality – questions that greet me as I yet again enter an empty house at the end of a long day, as I lay my head on the pillow and wonder what it’s all about, a weariness that lacks the energy to circle round yet again, desperate to find the propulsion that will keep me going.

The rung upon which I cling is the hope that it will not always be this way. I take in their tears, the rage in their voice, the demand for an answer, their moaning that contorts their body as they draw back toward the office wall, an unconscious bodily response of repulsion of the horror that greets them daily. I sit alongside them, my own shoulders weighed down with grief in every direction, the questions pummeling even as I am already on the ground. I hold out my small hands, feeble, cupped as a bowl, and offer to hold hope. Hope for them, hope for myself, that it will not always feel like this, be like this, protecting and nurturing that wee little flame that clings to life, the fervor small and frail that has tasted of something beyond this suffocation.

For six months I daily sat in this chair by the window, studying for my Licensed Clinical Social Worker exam, 21 years since grad school, trying to cram in thousands of new words into a brain that already felt saturated. At times I wanted to scream out that my brain had already been asked too much, had finally learned the language of medicine and cancer. Once foreign and new to me, I learned to speak fluently – febrile, nadir, kinase, cytokine storm, monoclonal antibody, gemtuzumab ozogamicin, bortizomib, mitozantrone, ejection fraction, LFTs, vancomycin-resistant enterococcus, and my all time favorites – the “vincristine push” and Entresto – no, not “Ernesto” – it’s heart drug, not a Hispanic man.

And now I was asking this same brain, who had already learned this language of oncology, cardiology, immunology, pulmonology and nephrology, because the actual life of my child was on the line if I failed to master it, to yet again sit with a gun to my head. Again it felt like a life was on the line – this time mine. Learn this language of psychology and therapy…or else. So I memorized the 12 criteria for catatonia which is easily recalled by the phrase “Stupid Cat Flexed and Grimaced at the Posterior of an Agitated Man who Steered his Mutts, Echolalia and Echopraxia, by their Necks” which is supposed to help you remember Stupor, Catalepsy, Flexing, Grimacing, Posturing, Agitation, Mannerisms, Stereotypy, Mutism, Echolalia, Echopraxia and Negativism – easy peasy lemon squeezy as Allistaire would say. Lists of typical and atypical antipsychotic drug names got smashed in there along with SSRIs, MAOs and SSNRIs. Now I can tell you all about Erik Erickson’s stages of development, Piaget’s stages of cognitive development, and Kolberg’s theoretical stages of moral development. I can tell you how many times a week over what period of time you have to binge eat to qualify for binge-eating disorder, how many days in a row you must have exhibited “expansive mood” to qualify for having bi-polar I versus bi-polar 2 and how to differentiate between schizophrenia and schizoaffective disorder. You know, your mom may just be the way she is because she’s stuck in the anal stage according to Freud. On and on it goes, all the while I feel the cold pressure of the gun’s muzzle against my cranium frantic to cram in more and deliver it in sensible manner during that four hour exam during which I am not even allowed to drink water.

The winter has been relentless, even absurdly reaching 32 degrees and snowing on June 20th. The relentlessness of the winter has paralleled this domination of sorrow and gun against my head sufficiently propelling me to not relent, to press on, desperate to be on the other side of it all. And as the exam of May 29th approached and my studying seemed to reach its culmination, I found myself in a sort of quiet lull, and eerie time between times. The hair raised on the back of my neck and I felt my throat clamped tight. What is this, I asked with voice low and cautious.

It was as though in all my rush and fury, blurring of tears and frantic ceaseless action, I had unknowingly come to the edge, to the end of the horizon. Suddenly I realized I had no idea what lay on the other side. Just as I had focused all my energy and courage to get through my first pregnancy and just have my child safely delivered, I found the looming question, “now what?” For eight years I have lived with and become accustomed to the terror of life-or-death. The black form of the reaper has ever stood in the corner of the room, it’s heavy dark presence sucking in any light that dares come into its orbit, always in my periphery. So intimately familiar with impending storm that ravages and destroys, with the metallic taste of blood and salt while thrashing out in the dark waves, I found myself bending forward, eyes squinting, what now? The bottom has dropped out time and time again. The potential for loss remains. Turns out there is no quota for suffering, there may be and likely is more to come. My Papa Murphy will be 96 years old this September. “Forty-plus possible more years of this?” my heart cried. Oh God, oh God. Must I go on if this is all there is? Let me be done God.

With only seconds remaining, I pushed the button on the computer to say I had completed the exam. My hands shook, my stomach cramped and heat stung the back of my neck. Passed. And just like that, the efforts of the past two and a half years since my husband walked out of our life, leaving me reeling, grasping for some path toward financial stability, it was done. On June 6th I received word from the Montana Board of Behavioral Health that I had earned my Clinical Social Work License, a credential that means little or nothing to most who hear it, but is the pivot point for me financially and professionally, opening doors before me.

You see, I never wanted to be a therapist, it had never even occurred to me. What I knew from the time I was an adolescent, is that employment is a trade, an exchange of money for your life. Literally, I carve out these hours here and these hours there, like scrapes of my skin, flints of my bone, ounces of blood and I hand them over. In return? I get money. It’s all a bit sickening really, gross but necessary. So I determined that such an exchange was not enough for me. No, there must be more. So I set out to look for work that would yield more than money. Passing through medicine I landed on social work. I have memorized the six core social work values, honestly having forgotten their specifics from schooling so long ago. They are Service, Social Justice, Dignity and Worth of the Individual, the Importance of Human Relationships, Competency and Integrity. They are summed up in love and laying down your life for all – every single one of us humans, bearing the resplendent, other-worldly, image of the living God. And more, there is a fierceness in that love that stands in shield of those whose very lives and well-being threaten to be crushed by all the brokenness of this world. It seems that God, incarnate in Christ Jesus, was the very first social worker, who declared worth and value and treasuring of those often disregarded, dismissed, passed-by, reviled – the poor, the orphan, the widow, the barren, the sick, the imprisoned, the foreigner, the not-belonging.

I have felt the sting of these. For me there is not even a word. I am a mother whose child is dead. I am on the outside of my own native tongue which does not even offer me a place, a standing. I offered to carpool to a work meeting the other day, when my co-worker gawked at my Suburban, asking me why I drive such a thing. The question of why one individual would drive a vehicle clearly made for more, inherent. I stuttered and stumbled, trying to explain that it once made sense though little now does. I remember learning long division in elementary school. How satisfying it was when the little number fit so perfectly into the big one and how agitating a “remainder,” as though no one knew what to do with this extraneous left over bit, the little hunk of dough left after cutting out biscuits, fit only to be thrown away. I feel the sting of being a remainder, a family of one-point-five. I don’t fit anywhere and no one really knows what to do with me, other than to remember me on major holidays and invite me to their gatherings, never apparently being worth including of my own accord in an ordinary week.

My sorrows do not make it possible for me to know what it is to have as your first memory being taken from your mother in a police car with stuffed animals in the back seat, daily gasping at the blunt force trauma ever fresh that somehow you were not wanted, not deemed worth keeping and can only guess that you must have been too ugly a baby. I cannot taste on my tongue the cigarette smell of your father’s mouth pressed on your little girl lips and his hand putting your hand on his crotch. I cannot imagine that Disney’s Lion King is synonymous with remembering the panties you wore as you were raped in that bed, perpetrator on one side, your little sister on the other. How can I begin to imagine the impossible decision before you to keep that baby or not, to consider a second abortion when you daily struggle just to survive in your own skin, unfathomable that you have the capacity to care for this new innocent so frail life when you have asked in agony again and again how you are to live out each day.

My own path does not allow me to know what it is to have walked that of another, but it has led me to sit in community with those who also ask weighty questions in the darkness, hearing our voices consumed by the black with no seeming answer in replay, no clear way to bind up the oozing, festering of lacerations, that even mere air passing over causes a wincing recoil.

As I moved the cursor and it hovered over the word “complete,” I shook from head to toe. And with the appearing of the word, “passed,” the tears came hot and unrelenting for twenty minutes or more, I incapable of stopping them, trying to force a smile so the test proctor would not be too concerned as he approached me with forehead knotted. “I’m fine, I passed,” I weakly uttered. To the back bathroom stall out of the testing center I fled, and sat there on the toilet, face in hands, crying and shaking. All I could say over and over was, “thank you God, thank you God, thank you.” How many times have I walked and stumbled, my hand shooting out to regain balance, tears blurring my sight, muscles weary and mechanical, a mantra simply to walk through the next open door? How many times have I stood on the other side of the door, mouth gaping, shaking my head in awe – He did it again, my God went before me. Every single time feels like a miracle, because it is.

That most recent door of becoming an LCSW, is one more way to live out the absurd privilege that God has granted me. Who am I to have been born an American in the 21st Century in a white girl body to English speaking parents who loved me and raised me in a stability that has yielded 50 years of their marriage to one another and financial means to send me to college and grad school and a brain that works decently well and a personality that has helped shape this path? Do I get to take credit? Nope, I sure don’t. But I am compelled to live out the belief that this privilege calls me to wield it in a way that cares for the lives of others, many of whom have had much more difficult, often brutal, starting points. Hence I am a social work and mighty proud of it, and God has seen fit through heart, personality, education, experience, the guidance and mentoring of those wiser and further down the road than myself, and little pieces of paper with letters like LCSW, to hone my craft of care bit by bit to more effectively love.

Having the fantastic relief and joy of passing my exam and earning my license, gushing in came the repeated refrain of “now what” tied tight to the longing to be done with this season. There seemed to arise a pulse of my flesh which pressed out the words, “I am ready to set down this grief.” I don’t know that one can “will” the Lord into doing what you ask, but through flex of arm and movement of leg, and scanning of eyes, I have set about in this past month to purge my home of all that belonged to a life that once was and is no more. At long last I have determined to live in the present. Turns out to be a radically difficult feat for me, but into the trash I tossed the little purple piggy bank I painted with Allistaire’s name. The great green monstrosity of my wedding album, the dog brush whose matted hair has sat for five or six years unmoving, the pack-n-play and board books, the little shovel and rake all went sailing into the trash. One of my clients works at the receiving door of Goodwill and just shakes his head as Sunday after Sunday I pull up with a car load full to the brim. I’ve sorted bags and bags of cards received after Allistaire’s death, countless drawings by kids who said they loved Allistaire and prayed for her every night with crayola drawings and spelling challenging to decipher. I sat for a whole half a day on the carpet with a ring of papers surrounding me – echocardiograms, bone marrow biopsies, flow cytometry and chimerisms, labs and bills. There were pages scrawled with notes in my own hand trying to make sense of it all, trying desperately to comprehend the words the doctors were telling me – to somehow use my rational, analytical pre-frontal cortex to make a way through while my limbic system was screaming in agony, a frenzied blur of misfired direction to survive – fight? flee? stuck like a frozen version of myself having no clue which way to turn. I whittled it all down to a few inches thick of paper that now sits neatly in a little plastic bin with a green handle.

I have two full outside garage cans worth of papers to recycle. Over half of my books have been swept off the shelves, many of which came from a time in my life in which I was steeped in a world that sought to debate nuances of theology for which I now have little to no energy. It seems King Solomon’s words in Ecclesiastes still ring true, “I saw all that God has done. No one can comprehend what goes on under the sun. Despite all their efforts to search it out, no one can discover the meaning. Even if the wise claim they know, they cannot clearly comprehend it.” Even as I write this I laugh, knowing there are those who will feel compelled to debate me on this bit of scripture. God’s word absolutely matters, and these days I am easing back into His grace knowing there’s a lot I won’t get “right” but setting my intention to live out a reflection of his love. Do I join my client in going to her abortion? Do I leave her alone in the dark of her misery and agony so as to ensure that my “stand for truth” will not be muddied? Can I love and value the life of the unborn and the life of my patient too – at the same time? I’m sure gonna try and I trust God’s grace can handle it. A tangent I know…

I sorted through all the photo albums, having to throw out the evidence of an entire life which cannot go forward into the next. Her closet is finally empty, having at last folded up the Disney night gown in which she loved to twirl. At long last, I went to the funeral home and had them divide Allistaire’s ashes into the two blue urns, one for me and one for her dad. I asked with cracking voice if I could make a strange request, realizing as the words came out of my mouth that the funeral director had probably heard it all. “Can you set aside a few bits of her bone?” I could see them white in the bag of grey ashes, a bag weighing only 2.25 pounds. “The remains” – language the funeral director kept using in reference to my baby girl who weighed 8 pounds 3 ounces when she was born. How could I explain that somehow I needed to have those bits of bone, the only remains of molecule connected to molecule to create the flesh that had begun in my womb. How could I explain that these bones were the birth place of her death, a marrow that spewed out rot and broken when it should only have been the means of life. What would I do with these bits of bone, I did not and do not know, only that while somehow I can imagine spreading her ashes in the wind or water, I must hold onto some fragment of her flesh.

And as the spaces empty and I contrive how to get rid of more, there is a lightening, there is getting out from under a pressing weight. Just over a week ago, I sat once again on a Saturday morning, drinking my coffee, staring out the window watching the aspen leaves shudder and quake and glitter in the morning sun. I sat with a little book with purple binding on my lap, and honestly a grumpy assumption I was about to dive into another cheesy Christian women’s devotional that would make me want to puke and dump it too into the trash. But Tara had heard this woman speak and mailed me this book, thinking of me. I ought to at least take a look at it.

I haven’t the time at present nor energy to begin to describe what happened next. I can only say that just as after years of building tension, such a cataclysmic shift occurred on the earth that the island of Japan moved and the earth tilted on its axis, so in a twinkling of an eye did the Lord shift my heart. Years of build up proceeded this moment, but it manifested in the time it took to read three pages. The Lord gave me a taste for what may lay down the road, off in the distance there is the shimmer on the horizon of a place worth journeying to, a path worth treading, a way out of the darkness that demands an answer for the point of my existence. The refrain that rose spoke, “perhaps endeavoring to alleviate some of the pain of others is reason sufficient to endure my own agony.” Funny, sounds like my all time favorite verse – in Hebrews it tells of a man who though he huddled in agony in a garden, asking repeatedly for the Lord to let this cup pass, He concluded that “for the joy set before Him, He, Jesus Christ, would endure.”

To be honest, I’m tired and hungry and have the lawn to mow and the bathrooms to clean in anticipation of my parents visit. This is one rare day off from work I’ve taken and I didn’t want to spend hours of it writing here, and certainly had not planned to do so. Yet in my sorting I came across a series of pictures, pictures I took to show in a way no words ever can, what cancer IS – the bulging pressure of insane dividing cells that will not stop but press out the eye of your child so you can hardly bare to look at the ghastly white of eye that you should never see, nor the black blood that drains out of her nose because the cancer cells are filling her sinuses and purple of bruise along her cheek or the call for more pain meds because your little sweets is suffering and now matter your heart, you can’t make it stop.

I have no energy to go back through this post and correct the inevitable spelling and grammatical errors. The truth is that in just over one month, I will for the seventh time, swing my leg over the saddle of my orange bike and pedal my way through miles of Seattle asphalt in a feeble human attempt to slow, and dare we hope – stop, the onslaught of cancer. I am again asking you to consider helping support cancer research at Fred Hutchinson Cancer Research Center. The series of pictures show not the progression ,but rather, the retreat of Allistaire’s cancer in the face of this beautiful monoclonal anti-body drug conjugate, Mylotarg, sometimes known as Gemtuzumab ozogamicin. Dr. Irv Bernstein’s lab at Fred Hutch developed this drug years before my little girl would be in desperate need of its weaponry. Allistaire is dead and her cancer overtook her in the span of two weeks with a white cell count of over 256,000 – 14,000 being about normal. Her blood was sludge from being packed with acute myeloid cancer cells. I watched my child’s grey mouth move like a dying fish on the shore and I will have to live with that image and the sounds that accompanied it. I will have to live with the letter from the boy who writes to tell me their horse just had a baby they named after Allistaire – Sapphire Rainbow Sparkle Jewel, instead of seeing that bright spark of a girl continue to burst forth extravagantly in this life.

Allistaire’s cancer cells are stored at Fred Hutch in Dr. Soheil Meschinchi’s lab which holds the largest repository of pediatric AML cells in the world. I will not forget the tears of this brilliant man over the loss of this seemingly insignificant six year old girl whose life cost $10 million to try and save. I have said it before and I will say it again, until cancer is cured, Obliteride is no more or I am dead, I will continue to exert my small human efforts to try to alleviate some of this human suffering. What more is the worth of my life than this? What better task to put my hand to, to give my money to, to exchange the minutes and hours of my life for than to call out to the Lord for life again and again and again.

Every where I turn there is brokenness and loss and rot in staggering array. Ever where I turn I can see if I am looking, that life presses on, that the light overcomes the darkness, that the winter ends, that out of the dark grime of dirt comes resurrection. I cup my hands in this feeble bowl and I hold hope. I am looking for redemption and I stand boldly in the throne room of grace asking the Lord to show His goodness in the land of the living, because He has invited me to do so, on the basis of my magnificent Jesus who sits on the throne.

To exchange a bit of your life for the well-being of others by financially supporting cancer research at Fred Hutch, support me in Obliteride by giving HERE

To read more about the crazy amazing doctors and research at Fred Hutch that directly relates to my girl who was a whole lot more than med rec number 1184859, check THIS out 🙂

For any arriving late to this story, or for those who wanted to make it to Allistaire’s service but couldn’t, here’s a link to that service three years ago in which I attempt to articulate what transpired. Plus, I guess I should have provided this link long ago – oops.

Feb26

Stirrings

Posted on February 26, 2016 by Conglomeration of Joy

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I grew up in a land of unfoldings. A land where one must bend low, look now, another unfurling. A land of delicate magic, intricate. Stepping over branches slick, footsteps quiet on the soft underfloor of forest. Ferns unwinding, their beings all folded up tight in complex arrangement, arching their backs, rising toward the light filtering down to them from high in the silhouettes of tree tops. Little ferns with leaves paper-thin, bright green in direct light, countless shapes repeating. Fuzzy juicy stalks and delicate sleek black ones. Mosses creeping, covering like downy shawl a glorious, vigorous green. Everywhere lush. I recall making a fern fort once. Ripping up scores of Lady Ferns, weaving them into walls and overhanging. I lay down upon the mossy floor and looked up through that scattered light, the greens bright like stained glass. Ferns and moss, resplendent greens of life unrelenting, delicate yet most resilient. Two gifts of this earth instantly inciting glee in my heart. Like Thoreau, I repeat, “I think my own soul must be a bright invisible green.”

And birds. Oh the birds. Fat breasted robins calling in the early morning when light has only begun to seep. Chatterings, bushes alive with tiny throbbing birds. Evening calls as day calms toward night. The days are lengthening. Crocuses and daffodils thrust up from the dirt. Cherry blossoms pink, forsythia and azalea. Tiny white clusters like thick stars on the limbs of apple trees. This is something Washington has that our home in Montana never will. Spring. Winter turns almost suddenly to summer in Montana and doesn’t come until June. But here, in this land, the drear of February, a time when the weariness of winter starts to become intolerable, it catches you off guard…there, did you see it? Stirrings. Hints that winter will not forever stake its claim. In the cold of ground and the rigidness of trees and branches, life still courses. Somehow what looked vacant, dead, unmovable, is everything to the contrary. Nay, there is an overcoming, some inner working unseen to my eyes, yet with such vigor as to burst through rock and soil and press out of wood and limb. A draw from distant lands, a call for the birds to return.

Spring is as sure as anything in this life. We know it deep in our flesh, our own veins course with anticipation. An inclining. An unconscious arching toward light, a yearning to feel warmth of light and freshness of breeze. Some mineral tang on the tongue that declares life never ceases, though all appears to disagree. That’s what we’re banking on, that is what moves us through our days. A hope. Hope. Such an overused word. But no, no. It is not merely some ancient knowledge that the earth will continue spinning on its axis, marking countless days and nights and a relentless orbit that will always swing back toward sun. No. Hope is unique to our humanity. Hope looks about and not only says, but proclaims, what I see now is not all that there is, there may indeed be more and different. Hope looks forward. Hope is the very essence of endurance.

There are stirrings in the woods, stirrings of song and light and delicate unfurlings that press against the dark and the cold. It makes me giddy. Giddy that death will never ultimately overcome. Giddy that the world is arcing in its orbit toward the sun. Giddy that one day the land will be bursting with life and the sun will rule the day and their will be an unstoppable flourishing. Abundance will mark life. No longer scarcity. No longer mere grasps at survival. No longer decay and death. The greens are unfurling. The birds have begun to call out to the morning. Spring is that tangible bright expression of the hope that courses through me.

And I have much to be giddy about. Hope abounds.

The land is wakening and it lightens the step and everywhere there is more to smile about. And Allistaire is doing just so surprisingly well. Dr. Sohel Meshinchi, our current BMT (Bone Marrow Transplant) clinic attending doctor, has ended our last several clinic visits with the statement, “I have no concerns.” This is like balm to the feverish forehead of a cancer parent. Her labs continue to look great and even improve. Her red blood and platelets are recovering, with platelet transfusions being spread out to one or two a week, whereas they had been every day to every-other day. Robin, our clinic nurse the other day said with glee, “Look Jai, look here at her ANC (Absolute Neutrophil Count), it’s normal.” She looked at me with shining eyes. Normal. 2,612 What an amazing number. What a wonder?! Normal. Imagine that!!!! Her liver function numbers have improved substantially and are only slightly high, her kidneys continue to do well and her BNP (measure of heart distress) was down to 119 the other day, a gorgeously low lab value. She continues to be CMV negative (Cytomegalovirus which can reactivate). Her weight is good as her appetite improves and taste buds return to normal. She has begun to eat salad, and even declares its tasty with the exception of the one half of one grape tomato I force upon her which causes her to dramatically grimace and gag every single time. She skips and paints and rides her bike and sings really loud with her headphones on.

Today marks Day+43 post transplant. We are still very early in this very long process. My brother asked me a while back, when we would know if the transplant was successful. Success is multi-pronged in this situation. The first mark of success is that she has survived the actual transplant process itself. Her body and specifically, her heart was not overwhelmed by the cytokine storm of the infusion of the donor cells, nor the hyper-hydration necessary with the chemo. The cyclophosphamide did not cause the slim but terrifyingly possible acute heart damage. Her lungs did not bleed nor did she have the brain damage possible with MMF. Her liver remained healthy despite the increased risk of VOD brought on by several rounds of Mylotarg. Her graft did not fail, rather Sten’s cells have latched on forcefully resulting in 100% chimerisms. Her marrow is clear of detectable cancer both by Flow Cytometry and cytogenetics. Thus far, her transplant has been a success. It is a beautiful surprise. Allistaire’s golden birthday is coming up soon and honestly, as I look back, this is the fifth birthday that I never knew would come and had much reason to think it never would. It is the fifth time we have had cause to celebrate life that might not have been, life that has been relentlessly hounded by cancer. But hope has continued to mark our days, and now years.

This next phase of transplant continues to be about making sure the cancer is kept away and about being on guard for GVHD (Graft Versus Host Disease). Every two weeks she gets a LP (Lumbar Puncture) in which Intrathecal Chemo is given and a sample is withdrawn to check for disease. This means chemo is placed directly into her spinal fluid as it can be a “sanctuary for leukemia,” given the blood/brain barrier that does not otherwise allow chemotherapy to pass through. While CNS (Central Nervous System) relapse is less common in AML (Acute Myeloid Leukemia) than in ALL (Acute Lymphoblastic Leukemia), the more common form of childhood leukemia, it is still a danger. She will get 5 LPs in all post-transplant. So far, her LPs have not detected any cancer in the spinal fluid. She will also be getting a BMA (Bone Marrow Aspirate), and PET/CT on March 15th. Typically BMAs are done post transplant only on Day+28 and Day+80. But for high risk patients they include another intermediate BMA. March 15th will be her first PET/CT since November and before her last round of chemo pre-transplant. At that time, her body was clear of chloromas with the exception of those in her sinuses, which had reduced in bulk from the previous round of chemo but were still present along with one new small chloroma. While her sinuses received 5 fractions of focal radiation and her body was barraged with TBI (Total Body Irradiation) and systemic chemo (fludarabine and cyclophosphamide), I am still nervous about this upcoming scan. Her cancer has defied countless assaults, its tenacity awe-inspiring and terror invoking.

At this point, there is no evidence of her disease. I rejoice at this and simultaneously remain on high alert, knowing “no evidence of disease,” in no way means we can confidently say there is no disease. The other significant issue the doctors and I are ever watchful of is GVHD (Graft Versus Host Disease). GVHD is when the donor cells attack the host (Allistaire), most commonly in the skin, gut and liver. GVHD is always a concern in bone marrow transplants but especially so in Allistaire’s case because of the much greater mismatch to Sten. Common symptoms of GVHD include skin rashes, tummy pain which can cause the patient to stop eating, diarrhea, and elevated LFTs (Liver Function Tests). There is a strange love-hate dance with GVHD. GVHD can severely impact quality of life and even cause death. What starts out small can suddenly turn into “rip-roaring GVHD,” so caution and response is necessary. But the treatment for GVHD has its own consequences. Immune suppressants such as prednisone and cyclosporine are given to tamp down the aggravated response of the T-cells. However, not only can these drugs have devastating effects on bones and joints (it’s not uncommon for teenagers to get hip and knee replacements), but the rest of the patient’s immune system is suppressed along with the T-cells causing the GVHD. This means the body’s ability to fight infection is radically diminished, again sometimes resulting in death from infection. In addition to the complications to be avoided from responding with medication to GVHD, the doctors actually want some GVHD. The thing is, when the donor cells are ramped up and attacking the host/patient, there is also the potential for the GVL effect (Graft Versus Leukemia) or GVT (Graft Versus Tumor in non-leukemic transplant patients). This is the secret weapon of stem cell transplants, an army roving the body to wipe out anything foreign which includes any lingering cancer cells. The hope of a transplant as a cure for cancer does not rely solely on the intensity of the conditioning, but rather, the more sophisticated element of the transplant is its micro soldiers that infiltrate the whole body and have the lasting ability to eradicate cancer. This is the “immunotherapy” element of a transplant. This is where I swoon. Don’t you just love it? And it has taken decades of research to begin to tap these mysteries.

A virus has taken up residence in Allistaire. Interestingly, it is a virus which even the most sensitive viral tests at SCCA cannot identify, never the less, she has had copious amounts of snot and some coughing. It is her first cold in over a year at least. With this virus we have seen what may be a small flare of GVHD, evidenced by a red spotted rash on her cheeks, spreading out from near her nose. Additionally, there seems to be a bit of a bumpy, slightly patchy pink rash on parts of her arms, back and chest. I was instructed to watch carefully for its advance both in terms of spread and speed. When Allistaire received the infusion of Sten’s stem cells (say that 5 times fast), she was given some mature blood cells from his peripheral blood but primarily his stem cells. Because the mature blood cells she received from her have mostly died out at this point, the immune fighting cells in Allistaire’s body are immature and have never been exposed to pathogens and are presently “uncoordinated” in their assault on this viral invader. Hence, both the virus and places like her skin are under attack. Apparently this pairing of having a virus and a flare of GVHD is very common. In fact, when there is evidence of GVHD, the doctors then go looking for an infection.

The other possible cause of this potential GVHD flare is the removal of one of her immunsuppressants and the tapering of the other. According to the protocol for her transplant, her MMF was to be stopped at Day+35. Typically at SCCA they would rather taper the MMF rather than stop it abruptly. However, Allistaire has clearly and repeatedly demonstrated that she has very aggressive disease putting her at extremely high risk for relapse even now. Removing the immune suppressants releases the hold on the T-cells which we hope will identify and wipe out any remaining cancer cells. For this reason, the doctors are very motivated to remove all immune suppression as rapidly as is safe to do so. So about a week ago her MMF was stopped all together. Then this Monday, 2/22, we began to taper her tacrolimus on Day+41, whereas the protocol calls for the taper to begin on Day+180. During this tapering process, she will be “watched like a hawk,” as the BMT staff seems to like to say, looking for any signs of GVHD and potentially backing off or slowing down on her taper if necessary. I am told that in these Haplo transplants, it is more common to see GVHD later than in unrelated-matched donor transplants (probably because of the post-transplant cyclophosphamide). More typically, acute GVHD is seen around Day+60 and later.

There is in the transplant world a magic number. One-hundred. One-hundred days is a song, like some mantra, some enchantment, a mystical goal out there in the fog. The standard is that, baring any serious complications, a patient’s Hickman line is pulled on Day+100 and is allowed at long last, to return home. I haven’t calculated the date exactly, but I know in Allistaire’s case, Day+100 is somewhere around mid-April. It’s out there. The date I avoid, I skirt around. I only allow it to linger in my periphery. I will not look it straight on. I am too well acquainted with disappointment. I keep my head down and we trudge on, willing ourselves not to be tired, not to be discouraged.

In August 2013, I was told in the most direct way, that Allistaire’s only chance for survival was a second bone marrow transplant. At that time, she was only Day+50 post her first transplant. You must wait an absolute minimum of six months between transplants to even have a chance of survival. For us that meant December. December was impossibly far off and the idea of going through it all over again was the most overwhelming moment of my life. People say the day of diagnosis is the worst. I most heartily disagree. When you are diagnosed, most of the time you have a plan, a means of response, hope that you can make it through. But what about when you’ve done the thing you came to do? You tried the big gun. And it just didn’t work. It wasn’t enough. And now your foe is even stronger than when you first began because it has mutated and become resistant at the very same moment that you are at your weakest, your most worn-down. But then Allistaire went back into remission with one round of chemo and there continued to be no more evidence of her disease as she completed a total of seven rounds of chemo post transplant. So when the day came for her one-year post-transplant follow-up and all looked well, I kept quiet. I was so very tired you see. I never asked about that second transplant. I just smiled and let myself finally feel a bit at ease.

Looking back, I understand the depth of that woman’s fatigue, but part of me screams, “You fool!” What if we had done that second transplant then? Her body was in great shape. No heart failure. No evidence of disease. A perfect time really for a second transplant. But I didn’t ask. I was tired. I just wanted to run as fast as could out of that cancer world and have a shot at normal life. Well, really I can’t remember if I asked or not. But even if I did, I must have accepted that answer. I’m not going to let that happen this time, no matter how weary I may be. I keep pressing the question. What are we doing to help prevent relapse? Okay, okay, we’ll do that, but what else can we do? What about this? What about that? As with so much in the world of cancer treatment, we are dealing in the world of utter unknowns. Dr. Meshinchi told me today that Allistaire’s specific MLL (Multi-Lineage Leukemia) translocation where chromosome 11 just broke off and attached to another chromosome, is unique among the 3,000 pediatric AML samples he has in his database. There is no data to say what someone is Allistaire’s very unique situation most benefits from. And every form of treatment has the potential for side-effects and the question is always, are those potential risks worth the unknown, untried benefit?

For now the plan is this: we will rapidly taper off all immune suppressants as fast as possible while trying to avoid GVHD in any severity. The hope is to allow the T-cells to have the brakes taken off of them and allow them free reign to roam wide and vigorously to eliminate any remaining cancer cells. Ironically, if there is no evidence of GVHD, we are planning on a bold move, rarely attempted, to elicit a GVHD response. The goal is to be off of all immune suppressants by Day+100 and if at that time there has been no evidence of GVHD, Allistaire will be given DLI (Donor Lymphocyte Infusion). DLI is an infusion of just lymphocytes from Sten. There are probably enough stored cells from his stem cell donation to get the necessary number of lymphocytes. If not, he can do a simple blood donation which would not require GCSF shots because it would not include stem cells. These donor lymphocytes would be infused into Allistaire in hopes that the white-blood cell hunters will recognize Allistaire as foreign and go on the war-path. Soheil does not recall them ever trying this “prophylactic” DLI approach. DLI has been given in the context of minimal residual disease in hopes to wipe out tiny bits of cancer, but never or very rarely when there is no actual evidence of disease. If she were to get DLI and it was well tolerated, she would be given a larger second dose about a month later. This also means that we have a good chance of having to be out in Seattle longer. It is all a matter of waiting and seeing.

A few weeks ago I found myself feeling extremely down, baffled and frustrated with my deep sense of sadness. We had just been discharged from the hospital and moved into our apartment at Ronald McDonald House. Allistaire was doing amazingly well, yet I could not shake saturating sadness. It was an act of will to hold back the tide of tears threatening to swamp my little boat. Perhaps like a runner in an ultra-marathon, having finally made it through transplant, I found all my reserves of energy come crashing down. I felt tired to my very core. When I tried to force myself to look up, all I could see were the sad, tired faces of my friends who have lost their children. I kept thinking of Stevie and Lilly reduced to ashes. How many? Sara, Ruby, Mario, Benton, Jaxon, Tristin, Christian, Pantpreet, Nolan, Jordan, Marleigh, Howie, Cyrus, Zach, Karlee, Bella, Lilly, Stevie. These are the children who have died in the time Allistaire has been in treatment – children and/or their parents that I have known – not even close to the total number that have died. These are the faces I have known. Though I have much to rejoice in with Allistaire’s progress, it has sometimes felt like her death is inevitable, just a matter of time. Sometimes my whole vision is consumed with the bright faces of children gone still. Home and a life freed from the grips of cancer sometimes seems like an impossible dream.

But there are stirrings see? Whisperings. Eyes a blaze with zeal. Minds whirling with ideas. Happenings. Little discoveries and victories that are starting to turn the tide. As the earth has reached the furthest reaches of its orbit, it has begun its journey back toward the sun, the earth warming and throbbing with life, unfurling. There are stirrings too in the world of cancer research. Great wonders have begun to be revealed. While it has literally taken decades and decades of research to get here, there is now starting to be a new world of promising cancer treatments which look in and down to the genetic level, down to the world of molecules. Immunotherapy, in which the intricacies of a patient’s own immune system is harnessed to track down and obliterate cancer while sparing healthy cells, is making incredible advances. Like a wild-fire that starts with a mere spark, so it seems is the world of immunotherapy. There is hope that the world of cancer treatment is on the verge of a tremendous revolution. There is hope that we are on the cusp of seeing a future for cancer patients that will look radically different from that dominated by the standard weaponry of chemotherapy and radiation.

Right at the center of this immunotherapy revolution in cancer treatment is our much beloved Fred Hutchinson Cancer Research Center. Check out this article from The Huffington Post that tells about the successes of Dr. Stanley Riddell of Fred Hutch which has yielded amazing results: putting cancer patients who have failed all other forms of treatment into remission at staggering rates using T-cells. Everywhere I turn at Fred Hutch there are new amazing trials and areas of research underway. Allistaire’s clinic attending, Dr. Soheil Meshinchi, and our dear Dr. Marie Bleakley are working on designing TCR T-cells that target highly specific proteins found only on leukemic cells. I sit and ask Soheil question after question and listen with mouth gaping, on the edge of my seat, eager to hear where the world is headed.

But there have also been moments as I’ve sat in wonder that I also find myself grieving. All of these advances are far too late for the eighteen children whose names I listed above. Much is even too late for Allistaire. Just four years have passed since she was first diagnosed and already the treatment of AML has changed. There are new tests done at the point of diagnosis to better determine what course of treatment works best with the individual’s unique disease. There are new treatment options that simply did not previously exist. It was only in April 2012 that the very first child was treated with genetically modified T-cells. I wonder what it would be like if Allistaire were diagnosed today, rather than four years ago. How much better would her chance of survival be? I also hear Soheil mention over and over again, “it’s a matter or resources…if we had the resources…” Resources!!!!! Sometimes I want to scream. So you mean, if you had the resources you could do this and this and this and give my child the treatment she so desperately needs? But you see, resources are scarce and government funding has been in short supply. These very brilliant, intelligent brains that should be devoting their time and energy to research, to what their good at, have been having to run around trying to scrape up money to keep their labs going, to find a way to pay to design that test, that piece of equipment, get the research from the lab to treatment in the clinic.

You know what I want to see? I want to see cancer research accelerated so that fewer kids and moms and brothers and friends have to have their lives cut short. I want to see treatments that actually cure! I want to see treatments that cure without poisoning hearts and kidneys and brains! I want to watch in wonder as scientists learn to use our very own beautiful, wild, amazing immune systems to obliterate cancer. And science is science – all these advances in understanding the genetic base for not only cancer, but for so many diseases, and how to make genetic modifications and therapies promises to benefit lives touching each one of us!

I’m going to get on my bike again this summer of 2016 and ride to accelerate research, to save lives faster, to obliterate cancer. I’m on Team Baldy Tops again this year in Obliteride and I’d love to have you join us! Come on out the weekend of August 13-14th and ride with us. There are routes for every skill level, from 10 miles to 150 miles. If you’re not up for riding, you can still join our team as a virtual rider and raise funds for cancer research. And easiest of all, you can donate! One-hundred percent of all funds raised in Obliteride go to cancer research at Fred Hutch!

Hope is being able to imagine a world that looks different than it does now. The cold and dark of winter is turning toward the bright zeal of spring. One day kids diagnosed with cancer won’t have to die, but can be cured and go on to flourish in this life. One day your mom, your wife, your sister, your daughter won’t have to fear breast and ovarian cancer and having to make the brutal choice of whether or not to cut out chunks of her womanhood. One day you won’t have to watch your dad whither away or lose your best friend. While my ultimate hope for life overcoming death rests in Jesus Christ and His promises of redemption, resurrection and a new heaven and a new earth, it is joy to see His grace in this lifetime as this vicious disease has begun to meet its match.

I will ride in Obliteride again this year because I will forever be indebted to Fred Hutchinson Cancer Research Center. Allistaire would not be alive today were it not for the research, the clinical trials and the treatment she has received through Fred Hutch. I ride in gratitude for my child’s life. I ride in sorrow for the children I’ve known who have died. I ride in hope for cures for cancer!

Check out this great video of Allistaire promoting Obliteride, now showing in movie theaters in the Seattle area.