Monthly Archives: April 2016

Apr30

Still

Posted on April 30, 2016 by Conglomeration of Joy

I cannot count the hours I have laid next to Allistaire with this quiet music playing. Putting her to bed for a nap, closing the curtain to her hospital room and posting the sign telling the world to stay away, Allistaire is sleeping. Laying next to her in Ron Don, going through our night-time rituals.

The music plays on but she is gone. Gone. The bed is empty.

After four and a half years of fighting her great foe, Acute Myeloid Leukemia…after two long grueling weeks since Sten and I made the brutal decision to no longer attempt to thwart her disease, an aggressive, relentless, mindless onslaught…after over three hours, as her body continued to fight, to grasp for life, lungs pulling for air, and a heart, oh her heart, far stronger than we could have ever imagined, that heart so determined, so fierce, it pumped on and on and still her mouth gulped for air when her chest no longer rose and there was not one flex of her heart muscle left…

And then stillness. Only the soft rushing sound of the oxygen still trying to sustain life.

Quiet

Utter stillness

How very strange to come to the end. To have this child between us, this longed for child that together we had conceived, this little bright vibrancy now extinguished, pale, still.

We love you little sweets, beyond words and time, you are so very dear to us.

Allistaire Kieron Anderson died early this morning at 1:33am, April 30th 2016

My deep and fervent desire has been that these most vicious versions of Allistaire’s cancer cells would be able to be studied and contribute to the understanding of AML, in honor of all that Allistaire went through and in blessing to those who will be forced to come behind her. Dr. Soheil Meshinchi, one of our spectacular, brilliant and tender-hearted Bone Marrow Transplant doctors at Fred Hutch, made a way for this final offering. Soheil is the COG (Children’s Oncology Group) AML Biology chair and oversees the largest pediatric AML tissue bank in the nation. Along with other doctors/researchers dear to our hearts (Dr. Katherine Tarlock, Dr. Marie Bleakley, Dr. Phil Greenberg, Dr. Todd Cooper), he is tireless in his pursuit of understanding AML and finding ways to thwart its stranglehold on so many sweet children.

These are the words of Dr. Soheil Meshinchi to me:

“I will do everything I can to learn all we can about Allistaire’s leukemia. Her diagnostic sample is being sequenced now and we will sequence specimens that you send us…Please feel free to call me anytime you want to talk.”

“My prayers are with Allistaire and your family. We will care for these precious cells of Allistaire. Please call me if there is anything I can do.”

And this comes from him this very morning, “Dear Jai, I wanted to give you an update on Allistaire’s cells. We received them in great condition. They were processed and a fraction was used for extracting RNA and DNA. We purified leukemic cells from another subset and banked several vials. We are waiting for the result of the foundation medicine testing with plans to sequence her recent cells as well. I’m available to talk anytime you need to. Best, Soheil.”

Allistaire’s life was strangled out by cancer and while I look in hope for her to have a new body, one incorruptible, I also strive after life here and now.

Please considering honoring Allistaire’s life and tremendous fight by supporting cancer research at Fred Hutchinson Cancer Research Center. You can join our team Baldy Tops or give financially to Obliteride HERE.

*We will be planning some means of memorial in the future, but have no plans as of yet.

**Allistaire is alive in all of these pictures (with the exception of the very last picture of her toes), though they are either days or even only several hours before she died. Some may find these very difficult to see.

Apr23

Call Me Sapphire

Posted on April 23, 2016 by Conglomeration of Joy

Standard

Each day, usually late in the afternoon, a call goes out, a harkening…”Let’s play family,” Allistaire implores. And often a personal invitation, no, more like demand, is carried by messengers to individuals, “Sten, Allistaire wants you to come play family…Jojo and Taryn, Allistaire wants you to play family.” It’s sort of weird because we’re already family so how do you play family? Down in the Rec Room we go. “Make a fort Mommy.” And so I use the armoire and the hot pink tipi and we drapes sheets and Solveig recommends using hairbands to get the sheets to stay on the top of the tipi poles, it seems she’s done this before. “No, turn the tipi around,” Allistaire says emphatically. And we turn the tipi so that it’s entrance now is within the fort, so that it is a room within rooms and within it we put the pillows and the blankets and Allistaire is brought in and curls up tight in the little dark space, just a small pretend camping lamp inside to illuminate the curvatures of her sweet face. She is always either the baby or the little sister. This time it is just us girls and we are picking names for ourselves from the realm of jewels. Solveig proclaims in loud voice over and over that she is Peridot. Lucy considers the name Ruby. Jo is Emerald and Taryn, Opal. I choose Labrardorite, an ugly name but my favorite stone. I’d heard that Allistaire had chosen Sapphire for herself, so I leaned my head into the door of the tipi to confirm. “So you’re Sapphire?” “Well,”and she considers for a long while, “I’m Sapphire Rainbow Sparkle Jewel.” So as our play proceeds I keep calling her Sapphire Rainbow Sparkle Jewel.

“Mom, just call me Sapphire,” she says to me as though it was so obvious, I should have known. And my heart smiles at her love of color and her delight in the fanciful, and my smile droops and the edges of my eyes tilt down, everything bathed in thin warm sadness.

“Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
How precious to me are your thoughts, O God!
How vast is the sum of them! (Psalm 139:15-17)

Outside are the exotic sounds of Sandhill cranes passing over in the cool gray of this Saturday morning. In days of old, days far to rare, Saturdays in which we four were all living in this same house, we would sit at the kitchen island enjoying chocolate chip and apple pancakes. How few have been those mornings and this morning? This seems most likely Allistaire’s last Saturday morning, a reality the mind can sort of grasp, but the heart gasps and gags, and everywhere wide eyes and the question, how can this be?

It’s funny how a few days of the same thing can lull you into thinking, ah, we have this routine, this is the way things will go. For Monday and Tuesday looked largely the same, with Allistaire sleeping in late until 10:30 or 11 and then we bring her up from her room to sit on the old green couch, the $1,000 Ikea couch now eighteen years old, faded green velvet that has been the backdrop for so much of my life. Sten patiently works with Allistaire to get in all of her morning meds, with she often moving in what seems impossibly slow motion, her hand holding the pills just millimeters from her tongue for what feels like minutes. And then I would scrounge around through the few clothes we brought and the bins and bins of Solveig’s old clothes in storage, to find a shirt that will fit over her grand distended belly. And sometimes the exertion of all this resulted in her falling quickly back to sleep for a few hours there on the couch. Eventually the cousins and the sister-in-laws would be beckoned to return. Allistaire would perk up in their presence and remain awake and engaged the rest of the day, though in a far more subdued and constrained way than her old self.

Wednesday began like the previous days so we had planned to meet up at the Museum of the Rockies around noon, knowing the absolute exploding zeal my nephew, Eli, would have over the dinosaurs. We brought the stroller and tucked Allistaire in under blankets. The planetarium show was about to begin and so we funneled toward the door where I was stopped and told, “No Strollers.” My mind and words fumbled and all I could get out was, “She’s on hospice.” We were allowed to proceed and were met with some sad Adele song before the program began. There in that alien like green like of the glowing domed ceiling, I cried and cried as Allistaire slept silently and Solveig held her hand. These outings, these things meant for fun and education, possible now only because she’s dying. I never wanted to bring her home to die. Dr. Cooper always warned of “going down in flames in the ICU.” That always held a certain appeal. I had no problem with that idea. Let’s bring this to an end hard and fast, fighting to the last moment, pushing for life and rallying every force to uphold life until in one swift strike it might all be done. But this? This simultaneous rapid yet so slow deterioration of the girl that burst with life, this fading and blurring, this slow strangling?

The hospice nurse, Joyce, came up Thursday mid-morning to draw labs. When she was done I changed both caps and flushed both lines. No, I don’t need any flushes or alcohol wipes, I am amply supplied with more than you can imagine as Seattle Children’s home care has always been over eager in their provision of line-care supplies. Allistaire’s all set for the day and in early afternoon I head down to what used to be Walgreens Infusion Center but is now Option Care, to pick up hydration supplies and be trained on their infusion pump. Angie (Dr. Ostrowski) calls me in the middle of our training time to give me lab results. Almost amusingly her kidneys and liver look great, even her hematocrit has oddly risen from 30 to 35 since Monday. Her potassium, phosphorus and uric acid are actually quite low which is strange given that these electrolytes usually rise with tumor lysis (cell death) which is clearly happening given her LDH which has jumped up to 1,700 (normal high is 200).

What smacks me in the face are blasts. Thirteen percent of her peripheral blood are leukemic blasts, making the ABC (Absolute Blast Count) 700. This is the first time I’ve seen blasts in her blood since November of 2014 and the onslaught is not subtle, they are coming hard and fast. And I cannot tell you how savagely I detest blasts. They are the dark hordes of an army on the horizon, advancing and destruction goes with them. When I finally got home I was shaking from hunger and I did not want comfort. My instinct was to take that pyrex bowl of pulled pork and hurl it with all might might, eager to see it smash and shatter with terrible violence. We’ve been in this place before, nay, we’ve been in worse spots, but never, never have I had to simply stand back and allow this beast to take her. Everything about this cuts hard agains the grain, my hands flex in fists and my jaw is set hard. I want to bellow some primal scream, a wail, a fury. Look! Look! The girl’s body fights on. The kidneys, they hold. The liver it holds. The heart beats on. The lungs fill, pulling in air and the blood sends the oxygen hurtling throughout all the furthest reaches of her flesh. Her flesh fights on! Are we to simply stand by? Are we to be accessories to crime?

And my pleading question repeats, “Is there really nothing? Nothing left for her?” Have you queried all your contacts? Have you circled the earth? Have you scoured and sought?

Nothing. There is nothing left for her.

And I know, I know. Ten million dollars. Four and a half years. Twenty-two long hard rounds of chemo. One genetically modified T-cell therapy. Two bone marrow transplants. Three separate attempts at focal radiation. There very best minds, tenacious wills and kind compassionate hearts. And it’s not enough. Still the cells march on and this time, this time there is nothing to stop them.

When I consider all that her little body has had to endure, what has been asked of it…numerous infections of RSV, C-Diff, Streptococcus viridans and typhlitus, on top of all the vast array of toxins gathered from the likes of the May Apple plant (Etoposide), the purple sea sponge (Cytarabine), soil bacteria, laboratory concoctions – sophisticated molecules with microscopic weaponry capable of disrupting mitotic spindles, slicing DNA and robbing the cell of its nutrients…I am in awe. Her heart, lungs, kidneys, liver, immune system – they’ve all been called upon over and over to respond to the most aggressive of assaults. They’ve rallied. Her body has fought so hard for so long. And it presses on, not knowing that this time there will be no special forces bring aid, there are no barricades. There are now no means of escape.

I have heard Allistaire repeatedly described as incredibly strong and brave. She is strong. She was knit together with a fierce fortitude. But she has never tried to be brave. She has never attempted to rally her courage. Rather she has yelled at times repeatedly, “I’m terrified, I’m terrified, I’m terrified!” Fearful things have come and she has called them what they are and she has walked into the fray and over and over shown herself to be resilient. Perhaps this is not an entirely fair description. She has in fact learned to calm herself, to close her eyes and breath slow, to repeat to herself, “You got this. You got this.” And yet, it seems that she just just is brave and perhaps this is because she knows no other way. When she was a mere 21 months old, she was called upon to endure, to press forward, to persist through pain, to do the hard thing over and over and over. While she has experienced so much brokenness, I longed to see what all this fortitude and perseverance would yield in her adulthood. What sort of woman would she become?

The world will never know Allistaire Kieron Anderson as a name on a resume or on a wedding invitation. Her life has been cut ever so short. But are these the right words? Does this phrase really aptly describe? What is true is that we all desperately wanted more. My heart keeps whispering with sad insistence, it wasn’t enough. I did not get enough of that girl. There are not enough pictures of two sisters together. My eyes will never get enough of taking in the sapphire sparkle of her eyes, the glee of her voice, the tenderness of her words, the curve of her chin and perfect dimples. Is there anything more wondrous as a parent than getting to bear witness to the miraculous unfurling of a child’s body and spirit? Do we not all stand in awe that are children’s legs, those legs which once curled up tight in our bodies, look, they are now so absurdly long. How has this come to be? How has cell added to cell to cell to cell to at last make this leg that can no longer fit on our laps but spills out all haphazardly and is quick to flit away? How is this child recounting to me that the hammer head shark has two sets of eyelids?

But the question that keeps slipping in is this, What is the measure of a life? By what standard do we proclaim with satisfaction, that a person lived a good life? Whether we ever say it out loud or think to intentionally articulate it or not, we have engrained in our 21st Century American hearts and minds that we are due 80 good years. Years that are marked by a happy childhood, great education, independence and self-sufficiency, a meaningful career and opportunities to explore the earth and delight in activities and accomplishments, to have a full family and at long last, to retire and spend our latter years in good health and leisure, and to eventually die surrounded by those we love and who have loved us and without pain or struggle. That all sounds entirely wonderful and who could not or would not desire such a life? We were created to long for life and life abundant with our whole beings, every fiber and cell intent on such vibrant life. And in our time in history and in our western world we have been able to achieve what most of humanity throughout time and place have never known and thus our expectation is solidified and our shock and angst at not getting what we want, what we expect, intensifies and we yell out – it’s all wrong! Six year old little girls should not die!

And the God of the Universe pounds His mighty fist in agreement and calls death the ultimate evil and promises a life to come wherein there will be no more death and there will be no more sickness or crying or pain. Every tear will be wiped away! Can you imagine? And we turn to Him and rage and rage, “Then why don’t you stop this?! Why withhold your arm that is supposedly so mighty to save? Where is your salvation now? Why do your turn your face away from this child? Do you not hear the agonizing cries of those that have loved her and cherished her? How could you possibly love this little girl if you are willing to strip away her life? How can you call Yourself good? And our hearts seethe and the acid of fury fills our veins and we declare with all our finite might – if you are any god ant all then you are no god I want, and we throw up our hands and storm away.

And like a parent with a child, our Father calls to us, He beseeches that we return to Him, that we take His hand and walk with Him. That we trust. That we cast our gaze out upon that incomprehensible sweep of space, of billions and billions of galaxies, of stars more numerous than the grains of sand on the seashore, that we consider the grass and flower that spring up for a day and then wither, that we observe the birds clothed in brilliant luminescent blue, that we watch the storm cloud racing across the valley and rising up the canyon with great flurries of snow, that we consider the glacier capable of gouging out the sides of mountains yet made of mere individual snow flakes too light to be weighed on a scale. And He implores that we look within, into our own hearts, to the marrow of our lives, what dwells there? Is there not a longing for eternity? Is there not a deep grief for our brokenness, for our sin? The God of the Universe, the Ancient of Days, the first and the last, He is not deaf to our fury, our desperate sadness. He asks us to consider that perhaps like a child who cannot understand their parent’s reasoning, we sink deep into His love for us and rest, trust, to know that there are reasons beyond our understanding and that one day this pervading sorrow that fills the entirety of our view, will somehow be a distant memory, a minor pain as it sits alongside all the wonders of His fulfilled promises.

And it sounds audacious and we gawk at the thought that we should believe that. And I do. I do rest in the words of my Father because they have been far more than words. Words that once were mere black symbols on the page, mere groupings of sounds, I have tasted of the Lord. I have seen Him with my eyes. I have heard His voice. I have seen His hand in my life over and over and over. And I will keep lifting my eyes to Him and I will keep lifting my hands to Him and I will keep lifting my voice to Him and I will keep laying down my life before Him and I will call Him Holy! And one day I will see fully what is the measure of a life. I will get to see the magnitude and the grandeur and bounty of what God can bring about in the small span of six years.

So my mind and eyes are set there and set here on this little girl who is slipping away from us. Yesterday we went into the Cancer Center here in Bozeman (which is part of the Seattle Cancer Care Alliance by the way which means all you Bozemanites – guess what? Your cancer care is directly tied to the research at Fred Hutchinson Cancer Research), so that she could get platelets. Labs were drawn again and only one day later her blasts had risen to 21% in her blood with a total of 1,700 blasts. When we finally arrived home she slept and slept. In early evening the cousins arrived and dinner was nearly ready but I felt no desire for food, so I slipped out of the house to the quiet of the driveway where I could walk around the bend out of sight and just sit on the gravely surface, watch the grasses bend in the breeze, the birds flitting and twittering in the air and the hazy Spanish peaks in the distance. I fiddled with rocks stuck in the road and remembered back to how Allistaire loved to pick out the tiny bits of colored recycled glass stuck amongst the stones. I would find dozens of little jagged pieces of amber and green and white glass, and occasionally the treasured bit of aqua. Then I heard my name, my mother calling, and I kept saying, “What?” and she wouldn’t answer and finally, “Allistaire’s having a hard time breathing. Sten is looking for you.”

She was asking for oxygen and Sten said she was struggling to put together her words. My eyes downcast, I flew to the phone to call Angie. We had already planned to arrange oxygen to be brought up to the house; Allistaire’s oxygen saturation was down to 83%

I have no time to finish this post. Allistaire is having seizures or strokes. Her right side is limp and she can no longer talk. She still hears us and understands – we have her raise her right hand for yes when we ask her questions. Lord Come Quickly!

Apr19

Good to Be Home

Posted on April 19, 2016 by Conglomeration of Joy

Standard

It is strange to sit in my cushy arm-chair, to wake each morning while three others sleep and watch light overtake the earth, sun rising over curvature and bathing the evergreens in bright liquid green, the underbellies of clouds turning pink, the grasslands of the valley warming in yellows. The aspens here are still leafless, but the snow now stands only in shady patches on the hills, amongst the trees. Yesterday morning spring snow flurries filled the landscape with the swirl of bright white flakes against greening fields, the day warmed and the sky turned blue.

It feels so good, so utterly right to be home. I feel a fool that we never even thought to include Allistaire in our decision-making about hospice, where she would end her days. Then again, while I had considered on many occasions where I would want her to die, the truth is, the word “hospice,” absolutely knocked the wind out of me when it was first voiced last Thursday. Hospice has always been linked with horror, the most inconceivable sorrow, the worst possible outcome. It is a word to turn from and flee from, willing your legs to run at speeds you didn’t think was possible. All you want to do is to get away from it. And as I have over the years been witness, sometimes from afar, sometimes closer in, to the end for many children, some going home, some dying in the hospital, I have asked myself, what would we do were it Allistaire?

Everything about the last four and half years has been held up against the question of, “what is best for Allistaire?” All choices have been formed in accordance with the goal of providing her with the best possible care. As I had considered those who went home and those who remained in the hospital until the end, I thought, oh, but I want so badly for those that care for my sweet girl’s body in her last days to know her as more than a body, to know the spunk and giggle of the girl whose body is betraying her. I want to scream at the thought of her being viewed as only a heart rate, number of respirations, kidney function numbers, a pain plan. No. NO! This is Allistaire Kieron Anderson, the child of my flesh, a girl hilarious and witty and beautiful and so very tender and kind of heart, a girl who will always entice you to play, who loves dress-up and colors rainbows endlessly. It is this bright being, this girl who I so desperately longed to know as a woman, a girl who has fought so much harder than you can ever imagine, who has endured so much – she is to be handled with the greatest of care, with reverence, with delight and love. And so I thought, I would keep her here, in this land where no only can she receive the absolute best of medical care with expertise in children, but with those who have cherished her, who have laughed with her, who have watched her grow up. These are the people who in whom I will entrust her last days.

But somehow, it just never occurred to me that such a question might really matter to Allistaire herself and that there could be things even more precious than having those who care for her, know her. So when we told her that she would die and asked if there was anything she really wanted, and her words came quick and clear, “I want to go home,” there was to be no denying her that wish. And we scrambled to make that happen, and the honest truth is that I called out pediatrician in Bozeman to let her know we were coming home for a visit, primarily because if Allistaire died at home I needed Dr. Ostrowski’s help to know what to do. Before I knew it, and without intending to, we had a “travel contract,” set up with Hospice of Bozeman. And as we stood in the airport Saturday night with the sun going down over the Olympic Mountains, the land of my childhood, the thought of going home began to swell in my heart. I knew that the setting of that day might be Allistaire’s last in the land of her birth, and yet home was calling in the deeps of me.

In the dark of night, the plane flew east, moonlight making the snow glow blue over endless mountains, the depth of the Cascades shocking in contrast with our perception of them from Seattle as simply a line across the eastern horizon. On and on we flew, the mountains never seeming to let up. The further east, the more my longing grew and in crept the thought, “I don’t want to go back.” The urgency, the clarity of that desire turned more and more to resolve, the ambiguity of it transforming into solid matter. I want to be home. And why? Why would we take her away from home again? My rational brain spoke up telling me again how we didn’t know how well she could be cared for in Bozeman and Seattle was a land of plenty when it comes to medical care. And while I conceded to that voice, still my heart claimed home. And as I allowed my heart room to speak, again it became clear, how, how could we force her again to leave her home, a little girl who has hardly known home, who has been deprived of it, always being forced to buck-up and do the hard thing because the hard thing has been required to give her the best chance of survival. But now? Now? Was Seattle really the only place that could provide her what she needed to keep her comfortable or could we perhaps find a way at home.

There are literally countless people who have been incredible gifts to us in this long, trying journey. And really, I think I’m tired of hearing people say “Cancer Sucks.” With all my heart I wish Allistaire could have had the chance at a thriving life, but cancer, this wild, rogue cell of unfathomable complexity, in truth, I am in awe of it, it is a fearsome wonder that causes the humbling of the most mighty, the most intelligent, the most tenacious. And cancer ushered us into a world we could have never chosen, a brutal road with hardships that have stripped us of so much, has gutted us and left us ragged and bleeding. But along this very path I have at last been given eyes to see things I was previously blind to, and my wounded heart has been given entry into fellowship with those who also suffer and its longings have shifted. This path we are told to fear, we are told to avoid at all costs and which really has stolen so much, has also had treasures scattered that can only be found here. And it has been along this road that we have had the delight of having our lives being entwined with phenomenal people.

Dr. Angie Ostrowski has been one of many such folk and it is in large part because of her willingness to go above and beyond the requirements of her role as our pediatrician, that we can have the confidence and peace of having Allistaire remain at home. Dr. Ostrowski came up to our home on Sunday afternoon and looked over Allistaire, a girl she has cared for the past four years, through two relapses and post bone marrow transplant. She talked with Sten and I about our desires for Allistaire and how she along with hospice here in Bozeman and with Seattle ever available for consult, might be able to meet these needs and desires. And while I suppose I already knew this to be true, I was reminded that even here at home, we have been blessed with excellent medical care, and more, a doctor who has known and loved my girl.

Sten and I both want what is best for Allistaire and ultimately long to care for her little self, the girl even more than the body in which she dwells. For Sten there has been some concern about the potential difficulty of having Allistaire die in our home, and the impact of that memory for all of us going forward, however, in a commitment making a way for fulfilling as many of Allistaire’s desires as possible, we agreed to ask Allistaire whether she wanted to stay at home or go back to Seattle. Originally our plan had been to draw labs on Monday and depending on how rapidly she seemed to be declining, we would decide whether or not to go back to Seattle. But now, as we crouched before her sitting on the couch, and Sten asked if she wanted to stay or go back, again her words came without hesitation, as natural as breathing, “I want to stay home.” And with that, it was decided that will not be going back to Seattle, and the absurdity of every asking her to leave home again was validated. Why? Why thrust this girl yet again from home?

And home, home, is not the very word calming, settling, restful? Some think that we ought to cut our own days short when we see the likelihood of suffering coming for us. I can only ask, what treasures, what sacred gifts might we be denying ourselves if we forego these last days? Solveig and Allistaire sat snuggled up on the couch yesterday morning, holding hands and Solver’s arm around Allistaire, she nose sometimes nuzzling Allistaire’s bulgy cheek, Allistaire’s blue eyes looking out at valley and mountain and field. Solveig reading story books to Allistaire while later she slept. The two of them up in Solveig’s loft working on a craft. Allistaire sitting with Uncle Peder, him teasing her, and her wry sense of humor jousting back. Solveig, cousin Per and I clustered around the Candy Land board and later sitting out on the deck encircled around the little fire, roasting our marshmallows with Aunt Jo, perfecting s’mores and the challenge of just the right degree of toasting to pull of the crusty outer layer, the “scab,” and place it again over the glowing coals, the sound of wind chimes and deer in the field. Solveig and Haaken and Per running down the driveway, flying the dragon kite with Allistaire tucked under blankets sitting enthroned in the cozy chair we set out in the grass. Friends coming by with boxes of Kleenex and tasty food and love and a commitment to continue on as friends, never turning away when there are no words that can ease the pain. Family flying and family driving from Washington all to gather round this amazing girl we have loved so passionately. Home. Where else could we possible want to be. It feels so utterly right to be here, some satiation settling into the weary cracks of my bones.

Sometimes she sleeps when everyone is gathered round and talking and her body simply needs to rest all cozy on the couch. And her tenacity remains as she insists on walking when it seems it could only hurt. And somehow, the “Buddha Baby” look of being fluid over loaded, presumably from kidneys waning, has dissipated some so that her eyelids no longer seemed strained though her belly is still rotund and pulling her shirts tight, disappointing her that she could not comfortably fit into her mermaid costume. And oddly her labs looked better overall yesterday, her creatinine down from .8 on Saturday to .52. Her liver function numbers the same, her potassium and uric acid actually down and her GFR (rate of kidney filtration) improved. Her platelet count and hematocrit still far enough above her transfusion thresholds that she should be fine for at least a few more days before another possible transfusion. Her ANC is down a bit for sure and her LDH (and indication of cell turn over) rose substantially. Thankfully her pain is under control. While we have to handle her very gently given the pain movement causes her, at this time she is only on the extended release morphine tablets and hasn’t required anything additional. She is sleeping peacefully at night and during her day-time naps.

It’s crazy how I still hold out hope, how I still think somehow this can turn around. I guess the reality is she’s been in such desperate spots before, dark places with no seeming exit and against all odds, on quite a number of occasions she has made it out, overcome what seemed impossible. The peaces comes quick when I am reminded that either God miraculously cures her or she dies. Seems funny that this should bring peace but it does, because I have yielded this girl, handed her over to my Father and there is peace in no more wrestling, no more wondering. Either way we are at home to stay. We are never going back to Seattle to battle cancer.

We are thankful for the days given us, the hours, the nights that turn to morning. It is perhaps the strangest of all to feel and know that we are eternal beings that making our dwelling for now in temporal homes, in vapors, as grasses and flowers that are here for but a moment and then wither and die and yet yearn for what we were meant for, a life that goes on.

Thank you to so many who have poured out your love and compassion on our family, for your passionate prayers, for your words when you feel your words fall flat and are insufficient, for your sweet faces and texts and cards. Thank you to so many of you who have donated money to accelerate cancer research at Fred Hutchinson Cancer Research Center. While I have respect for our devious foe, cancer, don’t get me wrong, I still intend to pursue that beast until it is slain and I greatly appreciate your support in this endeavor! So below is a link to donate to Obliteride, and also a link for Bozeman folk who’ve expressed a desire to help us out with meals.

I should also note, we are not planning to have any sort of memorial service right away. I do not want my time divided right now, I want to cherish these days. There will be time later to plan how we want to mourn together and rejoice in her sweet life together. However, knowing that such a time will come, it would be such a gift to us if you would send us a wee note of what you have loved about Allistaire, how her life and story may have had an impact in yours. I will never forget the clarity of God’s words to me that gray December morning in 2011 and the peace that they wove in my heart – “Do not focus on all that you fear you will lose, but be expectant, be on the look out for what I will do, for the bounty I will bring out of this.” While my hope for that bounty lies largely in heaven, it would bring such humbled joy to get a glimpse of God’s goodness here and now, in this world in this life. So if you’d be willing to take the time, mail your notes to our address below:

14176 Kelly Canyon Rd, Bozeman, MT, 59715

Click HERE to help put an end to cancer and support me in OBLITERIDE!

Click HERE to sign up to bring a meal

Apr15

Come to the End

Posted on April 15, 2016 by Conglomeration of Joy

Standard

The cursor blinks. Waiting. Waiting for the words to come, to extract from the blur, to distill the thunder and wailing silence.

We are those people. We have become strangers from even those who have known this road with us most intimately. She is not yet gone but the memories, they flash in and burn. Every step igniting shards of pain. Beauty and joy, that with the awareness of their loss, pierces rather than delights. Thoughts, uninvited barrage, come sailing past, slicing, blunt force. I was teaching her the names of plants and she would yell out their names as we drove about – forsythia, I see forsythia, she exclaims. Red-tip Photinia gets blurted out over and over. And there it is, a brutal mingling of what once brought joy and proclaimed life and growth is transferred into the category of no more and then the gaping expanse of emptiness where more names of plants were supposed to dwell. But I wanted to teach her to crouch low and delight in the delicacies of moss, of tender fern, of trickling stream, to watch the light stream through trees, to stop and listen, to soak in life, to learn the secret of the bounty observation brings…

We have had rough times before, really really rough times. There have distinct situations in which her life could have easily veered toward death, it was right there, standing at the threshold but never had it entered in. To look at her is disorienting, to consider the severity of the situation keeps getting rejected and spit out over and over. Dr. Cooper called in early evening. I told him of the second guessing our decision that had already come, of the disbelief that she really is being over taken by her cancer, that there really is nothing to stop it this time. I ask him again, are you sure, totally sure there is nothing for her, nothing? Nothing. There is nothing left.

This morning I thought, maybe there is something out there in the world, some new and wild way to tackle her beast, some new angle that can catch it unawares and strangle it at long last, extinguishing its mindless assault. But no. There are only the same grooved paths. Therapy, primarily chemo, all to get to a transplant and she just had a transplant. She just had THE transplant, the no holds-bar transplant, a full-conditioning volley of weaponry – if that didn’t work, there is at present nothing more under the sun that can cure. And so the question rises, can we give her something to hold her, to simply keep her going? But to what end? And it’s not like this doesn’t come at its own cost. The one possible goal was a CD123 CAR T-cell trial that is still in the works at CHOP (Children’s Hospital of Philadelphia), but it is months and months out. And with Allistaire’s current heart function she wouldn’t qualify anyway. And perhaps more than anything, the startling speed of this cancer’s progression makes nearly any novel therapy too late. Her kidneys are suffering with a steadily rising creatinine level. Her potassium and uric acid or rising due to tumor lysis. And this rise in potassium, the unbalancing of electrolytes, could at any moment cause cardiac arrest.

Before we knew it, without intending to and without being able to yet utter the words out loud, we began to discuss what it will look like for her to die. Does kidney failure hurt? No, it would be peaceful. As would her heart simply stopping, peaceful. What a strange thing to hope for your child. I do not want chloromas to overtake her body – they cause incredible pain and deformity. No, it seems most compassionate to make way for some other finality. I do not want her to bleed out. We must keep giving her platelets. But red blood? It may come to the point that we simply don’t give her any more red blood and she will grow more and more tired and sleep and never wake up.

I cannot believe I am having to have this discussion. I cannot believe the words entering my ears or coming from my tongue. It sounds like logistics, some planning committee. Hospice will meet you on Monday at noon. PAC Team (Pediatric Advanced Care Team) will do this, Dr. Cooper will check on this…but there is this little girl, the nucleus of all these efforts, these considerations. And while it all might sound callous and aloof, distant, I am confident of the sincere care for Allistaire in that room, especially that of Dr. Cooper and Dr. Bleakley, two doctors who have intimately walked this road with us, who have thought long and hard over Allistaire. They are dear to me and I trust them. I trust them because the are incredible brilliant people who have walked this road with families for many years, who understand the disease far, far more than most and who have known Allistaire as a real girl, not a med rec number, not a PET scan result or Flow Cytometry percentage. And so with what very little time we have left with our girl, I will not go running after obscure options. We have chosen to rest in the expertise of our doctors who are connected nationally and internationally with fellow physicians also working on AML. They are a gift of great worth to us. They honor us and honor Allistaire in their enduring work to care for children with cancer.

I am already incredibly tired. I don’t want to leave her side. I feel the tiny bones in her hands and the light passing across the tiny little peach-fuzz hairs on her cheeks, the long dark lashes and puffy eyelids. I listen to her breathing and rub the warmth of her back, the delicate blades of bone. And it all just hurts so bad. Tonight is Friday night. It’s always been Friday night pizza night and a movie. Sten and Solveig honor that tradition in Montana and we here in Seattle. But tonight? What is tonight? Is it my last Friday night with Allistaire? I gag at the thought. I long to throw up, to some how clamp my hands over my ears, to press my eyes closed tight and somehow make it all go away. Can I just go back to a week ago? Can I just undo this awful week? Can we please not take this path? I want to scream and scream and scream until my voice is gone.

When we sat with Allistaire on her bed and told her that we had met with the doctors and there was no medicine left, that she would die, we asked if there was anything she wanted to do. “I want to go home,” she said. And while we feel our resources for this situation are best here, we are taking her home for two days. Two last days at home in Montana. Time for the four of us to dwell in that home one last time altogether. Time for our family to gather. I don’t know how our hearts will bear up under it. But we must live out each moment, each minute that amasses to become an hour, and hours days. Yet we may really be down to days and I can’t stand the thought of it. My body just shakes, rejecting that the child I gave life to I have to at last lay down and walk away from.

I must go to sleep. In the morning I will pack for this brief visit home and she will get a transfusion of platelets and red blood to tide her over.

Thank you for your many messages of sorrow and love. Thank you for your prayers. Many of you have expressed a desire to help. First please understand that our time with Allistaire is so short, we will really be keeping to ourselves and our immediate family, a few close friends. At this point in time we ask that you don’t ask to come visit unless we have already communicated with you. Please know this is no reflection on you, rather a need to be realistic with our finite time and emotional resource.

Another way to demonstrate your angst toward cancer, your sorrow over the loss of Allistaire’s fiesty bright sweet spirit in this world, your support of our family, is to give to OBLITERIDE. I cannot tell you how brutal it was this morning to hear of amazing research underway in the lab that is no where near being ready for Allistaire. While I rejoice at the advance of cancer research, it is too wickedly slow! What heartbreak to know that while cures are underway, Allistaire’s body will have already ceased. Please consider honoring Allistaire’s life by supporting me in funding cancer research at Fred Hutchinson Cancer Research Center through Obliteride.

Click HERE to donate.

“Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.

Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen.” (1 Peter 5:8-11)

Apr15

Blind Sided

Posted on April 15, 2016 by Conglomeration of Joy

Standard

Blind sided. Out of no where. Everywhere bright sunlight, perfect blue skies, flashing radiant green leaves, bursting life. Though my mind knew the possibility of what the scans would reveal, optimism actually seemed to fill my view and I am not prone to optimism. I realized I had seen no change in her eye, nothing to show the march of cancer in her sinuses. Wednesday morning I knew I would end that day knowing something profound. And there seemed to be light on the horizon, it seemed within reach, for once a real genuine possibility that we might outrun this beast, at least for a time. There was one dark blot. The nurse practitioner on Tuesday had a very challenging time getting her marrow. She poked Allistaire three times in the right hip, twice in the left and so little, so little came out. “She bent my needle,” she told me. As soon as I saw her I anticipated something being wrong; my hot flush validated. Such a thing had only happened when she’d had disease. But she couldn’t have disease in her marrow. In an entire year of low-key chemo, she’d only had low level disease one time. I never even thought to worry over her marrow.

Dark shadow suddenly overtook sun. I had not heard the pounding of its horrible feet. No awareness of its stench. The speed with which it grabbed Allistaire…in a flash she went from her normal joyful little self, a bright sprite, a light, giddy blue eyes, a vibrancy…her face has already changed, her eyes puffy and the blue small slits full of pain. She has done little more in the past 48 hours than sleep and call out, whimpering from pain in her arms, her legs, her head. It hurts her to move, to shift from laying on one side to the other. If she walks at all it is tentative and slow, pain, pain. Gasping, gasping, mouth wide in horror, in shock, confusion. What? What is going on here? My understanding fails me. I could not comprehend the words…”there are two soft tissue masses in the left supraclavicular location…there are new hypermetabolic lymph nodes and lymph node clusters in the porta hepatis, retroperitoneum, and mesentery…there is diffuse increased FDG activity in the axial and proximal appendicular skeleton…the sinuses are clear.” A snarling tearing, flesh from flesh. No disease in the sinuses but, disease everywhere…in the short span of a month those cancer cells have been advancing, overtaking. Oh my God, oh my God.

In the span of a moment, we are careening into black, the suffocating grip. We had skirted this storm for so long, the black clouds, the sucking winds, an inertia ever threatening to draw us in and while it has always been with us, all these four years and five months, while it has remained in view, somehow, somehow we had evaded. I called Sten…you and Solveig need to come. Solveig arrived at 7am and Sten tonight. We went to SCCA for Allistaire’s regularly scheduled Thursday morning labs. When we left six hours later, as I cradled Allistaire’s great 20.7 kg of flesh, and was turning to go, I looked at Dawn, our long time nurse, the words caught in horror, “I don’t know if we’ll come back here…” Oh God. Oh God.

How could light and hope be extinguished in so short a time? I began the day knowing there was probably nothing we could do for Allistaire; that there was probably no treatment that could cure her. But still my heart clung to the hope that there might be something to hold her, to get her further down the road that somehow her life might intersect some new wonder of research, some new therapy that could somehow, somehow stop this ravaging. I thought my challenge would be taking the girls to Disney Land and not crying the entire time. But there was Jamie, the fellow. “Her marrow has 9.5% disease.” No wonder she’s in pain. Her bones are filling with cancer. In the course of time I learned that her chimerism had changed, now only 85% Sten and about 15% Allistaire, about 15% cancer. How could this be? A week ago I was told her chimerism were 100% donor. I could have never imagined this speed. Her labs show rising uric acid and potassium, evidence of tumor lysis, of rapid cell turn over, of the multiplication of millions of the most fearsome of cancer cells; cancer cells that had some how thwarted the assaults of a nuclear blast worth of radiation, of over 25 rounds of chemo, genetically modified T-cells and the mis-matched cells of another.

All of sudden I realized…the good has already passed. I have most likely already taken her to the park for the last time. When was that? When was the last time I followed behind her on her bike on the Burke Gilman? When was the last time I tickled her until she cried out for me to stop, never wanting me to stop. When did I last see her face look like her face, hear her unfettered laugh. I feel myself going down, my own flesh ripped from bone and tendon, sinews tearing. Agony. How can this be? How? How could I have already lost so much? But I didn’t even know!!!! I didn’t even know it was happening. I thought there would be time, time. And just like that – everything has changed. Every action has always been in orientation to her survival, to her life going on, to sustaining. And now it’s all been swept away. It’s already gone.

I looked at the toilet seat covers. I noted the handle to the door that I would never have touched with my bare hand. I thought about her reading book laying on the table at Ron Don. She’d come so far. She was doing so well learning to read. And now it was gone. When was the last time she sounded out a word, read her short little stories? She never even got to go back to school after she was discharged from the hospital because of her cold. I won’t have to figure out how to home school her. It won’t matter if other children in our town are not vaccinated. They can no longer but her in harms way. I won’t have to mourn that she can’t go in the water at Cliff Lake. She won’t be there. She won’t be there for my birthday. She won’t be there for Obliteride. She said to me this afternoon, she said, “I wish Obliteride was happening right now. Why sweet girl? Because there’s no medicine left for me. And then the doctors would have money to find something for me.” Aaaaaahhhhhhhhhh! The flesh of my face contorts and my heart beats hard. How will I get on my bike? How will I ride those miles? How can I not get on my bike? How can I not ride and ride and ride and ride and never stop, never stop asking for more. More. We need more!

Dawn showed me the med list, wanting to know if there were any meds I wanted to stop giving her. Because suddenly we don’t have the long view any more. Suddenly everything I have done as a parent to push her, to care for her as a person who will grow into an adult, it all falls flat, out of place. It no longer makes sense. I hesitated. How could I say no to any of those meds? How can I yield? How can I yield? How can I hand her over? But what does it look like to love her now? I have for so, so long fought for her, defended her with all my might, been attentive to ever last detail. How do I just walk away. How do I just stand with arms at my sides at let it come for her? We still haven’t met with the doctors to come up with a plan, but as the day progressed it became more and more clear that there is probably nothing to be done but make her comfortable. I asked Dr. Wolfrey, what do you think? I know you can’t tell me how long, I know you can’t predict, but you’ve been here a long time, you’ve seen a lot, what do you think? She agreed that it had taken everyone by surprise, the change had come out of nowhere, there was no hint of its onslaught. But given the rapid progression, she said probably no more than a month. Maybe two weeks. Maybe one.

Incomprehensible. I literally don’t know how to comprehend. I feel the immensity of this is more than my flesh knows how to allow in, to take into myself. Though I have intentionally looked death in the eye over and over, have never turned away from its black looming form, despite holding the cold hands of my friends children, it remains a reality disparate, utterly apart from all I have known of this child who has only ever burst with life.

What I can tell you is that those close to me, dear to me, those whose beloveds have died, they long to be reunited with them. And those that know Christ – their yearning has a specificity, a particular quality and dimension, a faint outline, their eyes keenly fixed on the shadow of what is promised, they have a yearning unlike anything they had previously known that draws them to the Lord, to call out with groaning for Christ to return, a desperation to leave this life and enter the next. Mental assent to the concept of death and disease and sin is not enough. One most know the gnawing of disease, the gaping hole of death, the ugly betrayal of sin in order to loosen the grip on this life, this world.

Ingrid Lyne’s sawed off head and foot were found Saturday afternoon in a recycling bin. She was savagely murdered by the man she was dating. She was a nurse at Swedish Hospital. She was forty years old and the mother of three young girls.

On the same day that Ingrid was found, my friend’s brother-in-law jumped off an overpass in California. He leaves behind his wife and sons.

A woman in our town suffering from postpartum psychosis, shot her husband in the back of the head, then her sixth month old baby before calling 911 and then shooting herself.

My friends have a box of all that remains of their little girls, ashes.

My sister-in-law grieves Jens’ body broken at the bottom of cliffs.

I have yelled ugly, belittling words at my children, the very children of my womb, the children I love. I have harmed my husband and not made safe space for him, I have been guilty of immense selfishness and materialism and arrogance and gluttony and coveting.

My six year old little girl likely swept away, never to admire her hilarity again, to see the sweet compassion in her eyes, to rub her back at bed time, blow kisses…

And you ask me how I can groan for another life, for another world, for an altogether different sort of life? How can I not? How can I not scream with every raging cell of my body that children should not die, that depression should not destroy, that sin should not ravage?

The brutal unending brokenness of this life, this creation causes my eyes to rise, to lift up, to fix my gaze, my hopes on God. Apart from hope of another world, another life, despair might likely dominate, or numbness or distraction. God declares this of the life to come, “Now the dwelling of God is with men, and He will live with them. They will be His people, and God Himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain for the old older of things has passed away.” (Revelation 21:3) This hope enables my to look full into the face of this agony, this dark, impending death, horrific violence, utter despair, and see the promise of more, of different, of other and my longing grows.

The bulk of my hope lies in a world yet unseen, in a reality promised but not yet experienced. The irony is that this assurance of God fulfilling all His promises, of redeeming all our sorrows, of all the days of my life being of purpose and enveloped in a vast and beautiful plan, of putting away death and sin for eternity, this subsequent loosened grip on this life, it frees me up, it gives me buoyancy to more fully dwell here, now, intently, without having to turn away. I don’t value this world and this life less because my eyes are fixed on the world to come. No, I am freed up to relish and delight and claim beauty and good where ever it is to be found in this life and in turn to know that it is just a whisper of what is to come.

It is mystery and paradox but my very love of sunlight, of craggy rock and star scattered night, of cool scent of sage, of birdsong, of cytoplasm and nucleotides and whirling atoms, of ocean and whale and storm and tectonic plate, of magnetic pole and bursting suns and waves of the electromagnetic spectrum – they all call out – they all declare and sing and sing of God and I treasure them all and I am giddy before them and they point endlessly to the might and glory of my God. I don’t love the earth less because of my belief in God – I love it more, more, more for it is all His, it is all the expression of His wonder. And if this is how I may treasure that which does not have spirit, how much more my fellow beings, crafted of but dust, but made alive by the breath of God?

Time is short and I must go. My words fall short as I try to grasp for words to put some beginnings of dimension and color to this mystery – this agonizing that comes from the thought that we may really soon lose Allistaire and yet – this brutality is all interwoven, caught up in realities far vaster, hopes that sustain the heart that tastes death.

The day has begun and Allistaire is already calling out in pain, pain in her legs and her first dose of morphine. I have already emailed Dr. Cooper to ask about another CD33 targeting drug (a sort of next generation Mylotarg drug) in clinical trial for adults – could it be an option for Allistaire? Could we get it on a compassionate use basis? And you know what – that drug – it comes from a sea hare, from the symbiotic relationship it has with the algae it eats, from some molecule that is formed in its gut. So you see, even in the midst of the most brutal ravaging, there He is, there is God not waiting to give us life only in the life to come, but in the most wondrous of ways, declaring, I am here! Look how I love you! Look how I have gone before you and provided for you. Look how I have compassion on your suffering. Look low here and now and behold that I am God – be in awe – see what I have made and if you think this is good, well just wait and see, this is only a tiny smattering of the glory to come. Come Lord come!!!!!

We meet with Dr. Cooper and Dr. Bleakley at 11am today.

Apr12

Range

Posted on April 12, 2016 by Conglomeration of Joy

Standard

A time between times. A place between places. The Bridgers fill the expanse, stretching miles and miles wide before me, foothills reaching out toward the greening valley floor, ridges and draws white with snow echoing lazy clouds above in that bluebird sky.

I’ve already hugged and kissed Sten and Solveig goodbye. I have yet to return to Allistaire, to take in her giggling little voice, to feel the smooth warmth of her still bald head.

Six days at home. A home that is home and yet stranger, a home that holds my heart, that taunts with its wonders of ordinary life, pulling the warm clothes from the dryer, matching socks for Sten and Solveig, clothes that encircle the bodies of the other half of my family. Washing dishes looking out the window at the Spanish Peaks, passing the coats in the mud room where wood smoke still clings its heady scent. Waking to the rush of wind in trees, bird song and the looming form of Sten still asleep next to me. Lying down at the end of day with the glitter of stars, from horizon to horizon, faint and bright, haze of star cluster, fiery white bright of planet. Hills turning from doe to fresh green, drawing the deer in dozens, their forms scattered on the grassy slopes morning and evening, their eyes luminous in darkness of night. Waving to my mother-in-law as I drive down Bridger Canyon Road and she drives up. Seeing Jess on the sidewalk with my little nephew, Per, and yes, I should like very much to walk over to the Emerson with you two to see your friend Jen’s new shop. Hiking the “M” with Hope, watching the pink swath of morning light overtake shadow of mountain and consume the valley with brilliance. Looking into Jo’s eyes swimming with tears, heaving sorrow for one entire year gone without her beloved, Jens fallen on Beehive Basin a day shy of a year ago. Hugging Solveig’s glossy brown hair to my chest, joyful for days at home with her, mourning that I must leave her once again.

Twenty-five of thirty-six months spent away from home. Not only must I leave yet again, but what I’m returning to looms up like oppressive shadows, a chill rushing in, clouds blocking sunlight. On Tuesday, April 12th, Allistaire will once again go through numerous tests looking for her cancer. On Day+91 Post Transplant Allistaire will have a PET/CT, Brain MRI, high-resolution chest CT, bone marrow biopsy, lumbar puncture and skin biopsy (to check for GVHD). The bone marrow will be tested by Flow Cytometry, Cytogenetics, Pathology and for Chimerisms (percentage of donor vs. patient/Allistaire’s old diseased marrow). In her last round of testing, I was originally told all nine of nine tests detected NO cancer. A week later, a second review of the PET/CT and Brain MRI concluded that there appeared to be some tissue changes in the area of her right sinus maxillary exactly where there had been disease before. The changes were not significant enough to allow the area to be biopsied, but could either represent leukemia or her cold/possible sinus infection. On the 12th, the images will reveal the path ahead, toward health, or ongoing battle with sickness.

There have always only ever been two outcomes. Either she lives or she dies. Nothing has really changed and yet, I keep smacking up against the brutality of her possible death. There seems to be no let up, no lull that does not last but a moment. When Dr. Burrows called to relay that the radiologists did not think it was feasible to biopsy the spot in her sinuses, I tentatively ventured to ask the looming question, what, what do we do if it’s disease? That very day I had gone to our Financial Counselor at the hospital to get some updated stats. To date Allistaire has lived 515 inpatient days in the hospital, almost 25% of her life cooped up within those walls fighting for her life. Sixty percent of her life fighting her nemesis. This battle has thus far cost $9,625,000. Nearly 10 million dollars have been expended to destroy a cell, one rogue screwed up cell that threatens to mindlessly swallow her alive. The very best of all that humanity has to offer has been brought to bear against this disease. No expense spared, to weapon denied. And yet…it still may not be enough.

With hesitation I asked about more treatment, pulling that massive number out into the light for Dr. Burrows to face. She tells me their focus is not on cost but on quality of life, they consider Allistaire’s quality of life and what may be able to extend that life. She went onto tell me how the world of oncology has changed in the time since she was a fellow, how in those days no one was ever offered a second bone marrow transplant. If you relapsed after transplant, there was nothing left, you died. Then in time they began second transplants, but then never if there were circulating peripheral blasts. But as research allowed for less toxic transplants and greater advances in supportive care, more and more treatment options became possible because patients could endure what was being thrown at them. She told me that even as short as a year ago a patient like Allistaire with extra-medulllary disease (chloromas), would most likely not have been offered a transplant. She told me that in all honesty, to be completely blunt, she did not think that Allistaire would survive her transplant. She thought surely she would die. As she sat after dictating Allistaire’s Arrival Conference for transplant, she wondered if they were crazy to offer this transplant to Allistaire, what were they doing to her?

“Jai, she’s defied the odds over and over again.” Yes she has. She had no complications in transplant with the exception of a small amount of mucositus in her bottom. She continued to eat, drink and take her meds throughout. Her heart held, her lungs did not bleed, her liver remained healthy with no VOD, she had no brain hemorrhage, she did not even ever need TPN. She discharged in record time, in only 22 days, the shortest escape being about 19 days. So, what will we do if it’s disease? The answer is unclear, the way forward a fog. I requested we sequence the genome of her cancer to get some more possible ideas of how we might target her disease. The answer arrived a week later, that yes, Soheil had approved deep sequencing to be conducted by Foundation One, and specifically their assay, Foundation One Heme. Here is a bit of explanation from their website:

“FoundationOne Heme is a fully informative genomic profile for hematologic cancers (leukemia, lymphoma and myeloma) and sarcomas, designed to provide physicians with clinically actionable information to guide treatment options for patients based on the genomic profile of their cancer. It is Foundation Medicine’s second commercially available targeted sequencing assay.

FoundationOne Heme uses comprehensive, clinical grade next-generation sequencing (NGS) to assess routine cancer specimens for all genes that are currently known to be somatically altered and unambiguous drivers of oncogenesis in hematologic malignancies and sarcomas. FoundationOne Heme simultaneously detects all classes of genomic alterations, including base pair substitutions, insertions and deletions, copy number alterations and select gene rearrangements in 405 cancer-related genes. In addition to DNA sequencing, FoundationOne Heme employs RNA sequencing across 265 genes to capture a broad range of gene fusions, a type of alteration that is a common driver of hematologic cancers and sarcomas.”

This genomic information on Allistaire’s cancer cells are then cross-matched with clinical trials and possible targeting drugs; all in an attempt to expand her options for treatment.

The sun is lowering in the sky, rays of light skimming horizontal across rock, illuminating the craggy face of Ross Peak. As my eyes rest on the timeless grandeur and power of rock and light, my mind hones in on these words, “The Lord commanded and it stood fast.” Psalm 33:9 “This far you may come and no farther, here is where your proud waves halt.” Job 38:11 My life has felt unfathomably tenuous, the thread frayed about to split and everything scattering. But this is illusion, this is sensation, this is seeming not actuality, this is seeing through eyes of flesh. And while this fight dwells largely in truest flesh, it is bound to and enveloped in the voice of God, the voice that calls out all the starry host one by one, each by name. Because of his great power and mighty strength, not one of them is missing. God my God is God over all, over every star and wave and cell and molecule and whirring atom. My life is anything but tenuous, it is secure in the Lord, and it is He who determines its boundaries, its dimensions, its qualities of light and color, of texture and fragrance. He commanded and IT STOOD FAST! Yes, yes I am absolutely terrified that Allistaire might still have cancer and I know of nothing left to rescue my girl and it makes me feel like my flesh will explode into a million ragged bloody pieces if this beast takes her down. Being home in the wonder of this beauty and ordinary makes me long to finish this fight all the more, makes me yearn for wholeness of family and relationships, of rhythms of days and seasons. The changing light on the Bridgers , shadows lengthening, colors of light intensifying – it all taunts and calls to me, the freshness of cool morning air, grasses waving in wind. But I gather it all up, a heap of longing and I fall down before my Father, handing it over, entrusting, resting. You are God. That is what it comes down. He is God and I will choose over and over and over to take His hand, knowing He holds all the world and its goings ons there.

What results come from Tuesday’s scans…they come from the hand of God, and by the power of His Spirit at work in me, that same power that raised Christ from the dead, I know, come what may He will hold me up. He will make my heart sing.

Thank you so much to those who have already tangibly supported our fight for Allistaire’s life in giving to support me in Obliteride. If your heart aches with desire for there to be another open door for Allistaire, for your own battle against cancer, for the beloved flesh of your mom, your brother, your dear friend, please consider supporting cancer research at Fred Hutchinson Cancer Research Center. One-hundred percent of funds donated to Obliteride go directly to accelerate cancer research.