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