Hard pressed. Perplexed. Struck down. The weight of sorrow presses so heavy on my brow. Sensations so familiar, so brutally common. How many times have I looked out the windows at this scene, the sky, these clouds ever in motion, wondering, desperate for a way through. I have never had a stalker, never been abused. But I taste the mineral tang of terror reinforced again and again, blood on the tongue. The framework of my days is forced to contort yet again to fit these new truths, these numbers that rip and snare. My heart exposed from tearing flesh. Assault, violence, silent snuffing out with dark weighty force. I weary circling round and round with this foe. Oh hard pressed, gravity compressing my chest into the ground, threatening, suffocating, no relief. Relentless. I catch a breath and am forced down again.
This morning I saw it, that golden light skipping, glinting, light gleeful on current and blue so blue. Green of trees and of grasses, bending like wave, accepting, receiving contortions not offered but forced by wind, yet mild and soothing in the acceptance. That bend in the river approaching Ellensburg, I anticipate, I am eager for that curve and strain to catch sight of it. Scene after beloved scene framed by car window, speeding by, brief but so known, so loved and familiar. Great hill covered in snow, in extravagant purple drapery of flower, the color of candle warmth in autumn, I know thee beloved rise of land. And I yearn for you. My whole being angles forward in desire, attraction. Without thinking, with gut response, I swoon as I see us flying over asphalt, east, east, oh home, dear home.
I will myself to turn, to be present, here, now, in this place. Day by day I must walk. Another day with numbers that do not change. A BNP that rises here and bobs briefly down, never nearly low enough. Every day the same, the same, the same, “no data,” the labs read. “No data.” There is nothing, not a single white blood cell in 28 days. No sign of marrow stirring. Silence. Absence. Cavern empty. And yet, she has changed. That girl thrust so violently under dark water, held down as she struggled and flailed and at last went limp and silent, she is rising, rising. Light returning to her eyes, giggle to her mouth and wiggle, joy, willingness to interact. Allistaire Kieron Anderson is emerging from this ragged fray, this assault. I gaze at her as light in perfect streams enters through window and passes over her face, illuminating a surface of perfect softness, multitudes of tiny blonde hairs. Peach fuzz. Irresistable to the touch, the softest soft, made more beautiful by sensational curves of cheek, perfect little nose and round landscape of chin. She plays and talks and wants me to see what she’s done, what she’s created. I swoon and am drawn in, her irresistible pull of delight. I adore her, my whole being arches forward, captured by the beauty of her sweet spirit. I cherish her.
Heart failure. Like deep thunderous, violent thud of sledge-hammer, the words pound with brute force, threatening to explode my ribcage. Heart failure. I tell Dr. Hakens how I hate to hear those words. “Well, you can’t sugarcoat failure.” Another blow. Monday’s echo was devastating. The door to transplant slammed closed. Her ejection fraction was 29 and shortening fraction 12. The wind knocked out of me and suffocating flee, flailing to grasp some bar of hope, some explanation that in its concreteness demonstrates finiteness and thus capacity for domination. What must be do to stop this torrent of loss, I wail? Are we doing all we can? We push through, we push, we walk forward. There must be a way, there must. This cannot be it. Oh don’t let this be it. How can we accept defeat. How can we just let this bright force slowly fizzle and die? All we have known for three years is FIGHT! How now can we surrender; raise the white flag and say enough? Death as end point has always, ever been there – stark on the horizon. A black silhouette impossible to disregard, impossible not to recognize. But my visions of that last great battle have always been a fight to the last breath, a fight with every last weapon, where if death comes, it comes because at long last we are deplete of weaponry and cancer has won. But agony, swamping sorrow to still have great weapons to wield and yet, simply no strength left, mere collapse. This image wounds in a uniquely awful way. I breaks my heart a fresh.
We have devised a two-part plan. With the direction of Dr. Hong, our cardiologist, her cardiac medications are being aggressively adjusted. She needs to be on Enalapril, a drug she has taken the past two years but has been off of the last mouth because it must be taken by mouth, not having been an option due to her typhlitis. Apparently, Milrinone, the heart med she has been on, doesn’t work in such a way as to enable the heart to rebuild function. It is more of a stabilizer and optimizes blood profusion. This has been essential with the great fluid load of her infection and need for healing of her gut. In order to begin taking Enalapril, the team of doctors decided to push up the timing on her CT which ended up happening late Monday evening. Thankfully the results of the CT were great and indicated “almost complete resolution of typhlitis,” and only “minimal residual thickening of the bowel wall.” Thus Tuesday morning began with her first dose of Enalapril at half the max dose. That night her Milrione was weaned down from .47 to .3. Yesterday, her Enalapril was increased to its max dose and Milrinone turned down to .25. The goal is to also add on Carvedilol today and Spironolactone tomorrow. Carvedilol blocks beta and alpha-1 receptors which results in slowing “the heart rhythm and reduces the force of the heart’s pumping. This lowers blood pressure thus reducing the workload of the heart, which is particularly beneficial in heart failure patients.” Spironolactone is a diuretic than helps reduce fluid retention. Enalapril is an ACE inhibitor. ACE (angiotensin converting enzyme) converts angiotensin-1 into angiotensin-2 which causes constriction of the blood vessels. As an ACE inhibitor, Enalapril blocks this action thus reducing blood pressure and easing the work load of the heart.
Right about now I want to jump up and cheer and sing and dance and smile, smile, smile. I am constantly, non-stop blown away by nature. The complexities, the intricate inter-relations – oh I just swoon and swoon and am enamored of it all! Yes, I hate, hate, ragingly despise that the heart of my sweet girl has been so weakened that it might cost her life. But I cannot deny the wonder of it all. The spectacular, pure extravagant beauty of God’s creation. He made this!
The second component of the plan to get Allistaire’s heart back in a condition sufficient to move forward with transplant, is to delay transplant. At this point, her transplant is scheduled for March 19th. This gives very little time for her heart to recover as these medications are not necessarily fast acting. Before I even talked to Dr. Gardner, I knew this was likely the course we must take. At the very bottom of the list of downsides of delaying transplant, is it means another month at the very least out her in Seattle. It has now cost me July, oh July, sweet singing green exuberant July, perhaps Montana’s most perfect month. The bigger issues with delay are that there is a now a longer window in which unexpected harm can enter; a mere cold could throw everything off. More significantly, the rash of measles outbreaks which are largely connected to unvaccinated children, could literally be the death of her. The measles virus can linger for 1-2 hours after someone infected leaves the area. It hangs in the air, impossible to detect and thus avoid. In a person with a normal immune system, measles can be awful. In a child like Allistaire with little to no functioning immune system, it could very easily kill her.
Secondly, there is ever the beast, ever the threat of being devoured by cancer. Time is a scarce resource in the life of a person battling cancer. Time is a luxury. If Allistaire’s cancer is currently suppressed, it means nothing about what may happen in the coming weeks. Being undetectable in no way means it is nonexistent. Next Tuesday, 2/17, rather than being transferred to the Bone Marrow Transplant Service as originally planned, she will have a bone marrow aspirate taken. If we are still in the PICU (if she hasn’t weaned off Milrinone), then the procedure will be done in her room with the ICU attending providing anesthesia. Otherwise, it will likely be done in the operating room where they have better support than in the procedure room of the Hem/Onc clinic. For the last 28 days her marrow has not produced one blood cell. In her last round of chemo, her marrow began to recover after 14 days at zero. This significant delay is likely a combination of being pounded hard twice in a row by this chemo and her severe, traumatic infection. Looking in her bone marrow will tell the doctors if there is any recovery happening or in the worst case scenario, her marrow is so packed with leukemia that no healthy cells are able to be produced. I think a packed, cancerous marrow seems unlikely given that in the past two years, whenever even a very small percentage of disease has been present, there have been blasts in her peripheral blood. Thankfully, there continues to be no evidence of blasts. Depending on how her marrow looks going forward, the proposed month’s delay in transplant could require more chemo (probably Decitabine), though perhaps she wouldn’t need anything. As is simply ever the case, we wait. We wait and see. We wait.
Every single day feels like an impending death sentence. Every single day a new number can indicate the tide has turned once again. This morning’s BNP, which they are only looking at twice a week now, was substantially increased to 1420. Everyday begins with these numbers. It’s like being constantly pushed around, shoved hard this way and that, ever a precipice waiting to swallow. Waiting is hard, really, really hard. But I have discovered a secret, a mysterious way of God. He loves to make us wait. Not because He is cruel, but because He loves, because His aim, His hope for us far supercedes our own. We dwell on this earthly, temporal plane, wailing in pain, thrashing about, desperate for things to work out as we so desperately hope. We have set our eye on our desire immediately before us. But God…He is over all, under and around, above and below and on all sides. His view engulfs our little view. He waits. He waits with us. He restrains His hand because He is holding back the tide to make room, to provide space in which we are invited to face Him, to wrestle, to grab hold of His extended, merciful gentle, powerful, loving hand. He allows the tension of waiting because it is often in this electrified static that we have most bountiful opportunity to turn to His voice, to seek His face. This is His aim. This is His yearning, His craving, His unbridled passion, to draw us to Himself. It is not that He is unmoved and cold toward my bleeding heart. It is not that He is powerless to change my circumstances, in a flash, in the blink of an eye. It is that He has clarity of vision. He declares that life comes solely, only, directly from being bound to Him. Love is patient. Translated in the King James, it says love is long-suffering. This is the very first descriptor of love. God is love. God is long-suffering. He suffers with us in our sufferings. He endures with us. When at last will we come to the end of ourselves and see that He offers us life. Life abundant. Life eternal.
Father, thank you for drawing out this suffering, for expanding its parameters. For You have filled this space with your bounty, your halting beauty, with light unearthly. I swoon as I fix my eyes on You. You have patiently walked by my side and I rejoice to know that no matter the days ahead, you will never leave me nor forsake me. You satiate and I come running for more, more of you Lord! I come weeping, weeping, calling out for mercy. Mercy Lord!!!
If by any chance your heart breaks knowing how broken Allistaire’s heart is from all of her harsh treatment…if you wish for some better option for her…if you wish her cancer could be cured without destroying her…if you wish there was just a way to put an end to cancer, to obliterate it…
There is something you can do. When we join our resources together, we really CAN make a difference in the options available to children like Allistaire. By joining me in raising funds for cancer research at Fred Hutchinson Cancer Research Center, you are furthering, accelerating the chances for life for kids and folks like yourself, like your mom, your brother.