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!