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
You are loved and prayed over…
Oh, precious Anderson family….we are weeping for you and praying for you. May our God give you all the grace and strength you need for each and every moment. ~ Montoya Family
Prayers, love, hugs and more hugs and loves
Words seems incredibly inadequate at a time like this but thankful that God is in the midst of it and is a strong tower we can run to and be safe! Praying with tears for you all!
Praying for sweet times with her, however long God gives you.
Heart broken for your family. Thank you for your gift of sharing this journey encouraging us along the way. May we all now do our feeble best to tenderly hold up your weary hands through prayer. May the God of all peace gaurd your hearts and minds through Christ Jesus.
admiration, love and prayers being offered up to your family. I am lifting my eyes up to the mountains and rejoicing that He is in control and the lover of all things He created. May these days be full of laughter, joy, love and peace.
I kept praying this weekend that Allistaire would be able to live out her days at home; I’m thankful it will work out for her to be where she feels safe and comfortable. Allistaire is so beautiful: may her sweet face remain unmarred. May she experience joy and family and every good thing until the Lord calls her home. May Sten, Jai and Solveig remember every moment, every touch and sound. May she be imprinted on your souls and in your minds until you’re reunited.
Make sure you get some pictures with you, too, mama! Capturing the moments you cuddled her to may help to bring your mind back to how it felt to hold her, feel her and smell her. Maybe you are having those pictures taken and are choosing not to post them…I hope that is the case!
Jai, I’m a friend of Esther’s and have prayed for Allistaire and your family. You continue to be on my heart. Thank you for sharing so transparently. I love the message from God that you treasure in your 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.” I think of Abraham and how his faith in the Lord’s promise – despite the circumstances – was credited to him as righteousness. Not that you are looking for any credit to yourself even in the form of righteousness, but the Lord sees and knows and He takes so much pleasure and delight in you, His beloved daughter. May the sweet whispers of His assurance and tenderness of His love continue to fill you and your family.
Hi, Jai. I’m a friend of Esther Lee’s and have prayed for Allistaire and your family. Thank you for sharing so transparently. I love how you treasure in your heart the words the Lord gave you back in December 2011. I think of how Abraham’s faith was credited to him as righteousness, and how the Lord takes such joy and pleasure in your faith. I love how the apostle Paul talks about Abraham in Romans 4: “Against all hope, Abraham in hope believed and so became the father of many nations, just as it had been said to him, “So shall your offspring be.”Without weakening in his faith, he faced the fact that his body was as good as dead—since he was about a hundred years old—and that Sarah’s womb was also dead. Yet he did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, being fully persuaded that God had power to do what he had promised.” Indeed, the Lord is good and true. I delight in the hope of this great bounty that He will bring. As you are on the lookout for it, just as Elijah was on the lookout for rain, let His great bounty of blessing rain upon your household. May He continue to strengthen each one of you through rest in Him.
My heart aches for you and your beautiful family. Thank you for sharing your journey with us and keeping everyone updated. I am glad to know that you get to spend your time as a family in a beautiful place. Thank you for staying positive and enjoy your snuggles on the couch.
Cornerstone Church down here in Jackson Hole continues to pray for you all. Love you guys. What a wonderful family you are.
I don’t know you but I live right near you on Bridger woods road. If there is anything at all I can do to help, just tell me. So sorry for all your pain.
May the peace of the Lord be always with you.
An ancient Greek dramatist wrote: “And pain, which even in our sleep, falls drop by drop into our heart until, against our will, comes wisdom through the aweful grace of God.” Grace and peace be with you all. Wisdom is already yours, Jai.
I heard about your family yesterday (4/18) through a mutual friend on the east coast. Your daughter is so dear. I do not have any children, so I can’t adequately empathize, but my heart breaks for you and your family. I have sent out e-mails to people here on the east coast asking them to pray.
One more benefit you can add to your list of “treasures scattered that can only be found here”: Seeing your love for your daughter makes me think, God’s love for His children is certainly not less than that. So it must be a deep love indeed.
I am so grateful that your beautiful family , is able to be at home.My six year old overlooked my shoulder as i was reading your post today.As I explained the realities of Allistaire’s illness, his childs mind came up with a solution, “put her in a balloon and send her up to God”, “and tell her I love her” Though it is perhaps oversimplified it was said with love and I wanted to share it with you,Jai,
We’ve never met. I’m friends with Stevie’s aunt Wandee. I have followed your journey because you are friends with the Rasmussen’s. I read your blog posts and gaze at the pictures of your beautiful girl with uncontrollable tears. No family should know this pain. I am sending love and prayers to you and your family!!! May have as much love, smiles and snuggles in this time!!
I have been reading your blog through a friends Facebook page and have so many emotions. Your family’s incredible strength is so inspiring. The courage of your precious daughter battling so many episodes of cancer throughout her short life….heartbreaking beyond measure. The love you all share is breathtaking. Thank you for sharing this precious time and journey with the community of Bozeman. This world is forever a better place with Allistaire being in it ❤️ May you all find comfort and peace in the days ahead.
Prayers continuing to go up for you guys from Cornerstone Church here in Jackson Hole. Love you guys
Jai, I sense a peace in your words, a peace in being home and knowing the Lord is in control and loves Allistaire more than anyone can this side of heaven. HE hears our prayers for you and your precious girl. I will be holding your family up in prayer daily – many times a day – as my heart is breaking for you. I love Allistaire and the Anderson family. So, so many of us do. May your minutes, hours and days be filled with many special, memorable moments. Truly, no words can express my sadness. XOXOX
What a beautiful and blessed homecoming the Lord is giving you all by going home to Montana. I’m so happy you will have these sweet memories and Allistaire gets to enjoy just being home. Love and prayers.
I am in awe of your family’s strength. Momma Jai – your faith and love have been the cornerstone of this journey. I am glad Allistaire is home and in no pain. I have been reading your blog for so long. I have cheered you on, sat quietly and held my breath as I read your words, and often cried with you. I will continue praying for all of you. Please hug sweet, brave Allistaire for me. As always, let God be your Anchor.
“…The Anchor holds though the sails are torn
I have fallen on my knees
But the Anchor holds in spite of the storm…”
~ Hebrews 6:19
I have never met you, but am following you and so touched by your story. Please tell Allistaire that she is a beautiful and courageous daughter of God! She is the bravest girl and her precious soul is visible in her sweet face.
I’m grieved as a fellow parent reading your battles and struggles but I thank you for sharing and bringing glory to God amidst it all.
Our prayers are joining yours. You will never regret the fight and the love you are pouring into your family.
Jai, we are all in awe of your strength, faith and wisdom. You’ve done all that could be done to help Allistaire fight this merciless beast called cancer. Your indomitable spirit has sustained Allistaire and your family along this terrible journey. You have never lost hope despite all the trials along the way, and found a deeper wisdom that inspires us all and gives us courage in facing our own life trials, but especially those who have to walk the same journey as your family. Yet, what joy Allistaire has brought you all in spite of all she has had to endure. May God’s peace be with you that surpasses all understanding.
Sending lots of love, hugs and tears to your whole family as Allistaire continues her journey “Home”.
Steve and Cindy Daines
I love the fact that this painful time will be forgotten when you join your Savior and your sweet little Allistaire in Heaven. I’m praying for you all.
What a strange comfort to be home. To enjoy this sweet time together. Prayers for rest and peace as you gather about His throne together. I weep with you, and pray for each changing moment. Much love from Boston.
So glad you are home in Montana. I prayed that you would go there with Allistaire and with Gods goodness cure her or let her have a lot of happy memories to get her through this time. Your family our always in our prayers. Pam and Mike Nadolski
My name is Sandi Scheer and I am DJ Flatness’s mother. I know you all don’t know me but he has kept me up on Alistaire and her illness. Yesterday he let me know that she was going home. Just so happens by the grace of God, we have been studying mourning and grief in my morning WOG bible study here in NV were we live. I wanted to share a verse from the bible that only makes sense in this time of need, Matthew 5:4 says God blesses those who mourn, for they will be comforted. Please hang on to this verse. I know nothing can be said to you to relieve the pain you are going through and have been going through so maybe, just maybe this verse can give you some comfort. I recommend a read called The End of Me by Kyle Idleman. Prayers for you and your family.
Jai, it is so heavy. You are always on my mind and I press against the despair and depression to see His promises, as you are so faithfully doing. Thank you for being that beacon of light that God is good and faithful even when things are truly just crap. But also thank you for shedding light on this journey, the gory mess, the incredible pain. Your words help people see that this life is not what we live for. You are a true witness, my dear sister. I am constantly in prayer for Allistaire, your family, and you. Though we can not truly know the bone shattering pain you are experiencing until the path becomes our own, know that our sleep is interrupted with heavy hearts for you, our days are filled with thoughts of you. We love you and we are so, so very sorry that you are enduring this now.
I saw this post and what incredible compassion and an amazing gift from God this family is!! Thank you for sharing intimate thoughts and feelings of strength, love, sorrow and pain. How blessed the world is to have a family such as yours in it! Setting the example and showing the way for countless others. Today I pray your day be light and joyous. Calm and filled with laughter! Send love and prayer for whatever God has for you today!! ❤️
Jai… thank you for using your clear gift with words to allow us a glimpse of what you are walking through and a glimpse of what God is allowing you to see of Himself in the midst. Crying with and praying for all of you.
So, so glad you and Allistaire get to be in the comfort of your own home with your amazing family. Still praying hard, and still weeping with you. -Alison
So, so glad you and Allistaire get to be in the comfort of your own home, with the love and support of your amazing family. Still praying hard for you all. -Alison
Sorry, I thought my first comment had been deleted!
Jai, Sten, and beautiful girls. It’s Dayna and McCall and Cady. We spent a few days with you a couple of years ago on the shores of flathead lake. I remember how funny Alistair was at camp, and the piercing disks of the blueness of her eyes. She is a beautiful soul. So full of life. How can this be. My heart aches for all of you as I lay here with Cady in the room my mom died in 2 months ago I am feeling so small in my grief as you are facing the loss of beautiful lively funny….full of life Allistaire. I know hospice will guide you and hold your hand, and there will be food, and Angie will be there to help her stay pain free on this journey, my prayer for all of you is that God holds you in his hands and wraps you in a blanket of faith. Much love to all of you. We are sending prayers to all of you. I am glad you are home. Home is where family lives it is where living happens. Love, Dayna
Thank you for sharing the road home with us. I am so glad you have decided to stay. I can feel the peace and clarity in your words and see the abundant love that surrounds you. I love your girl dearly and am keeping you all close to my heart.
Thank you for sharing. My heart goes out to you and you beautiful family. I know seeing your baby sick is one of the worst things imaginable, just remember God is there every step of the way and you have a huge support system praing.
You don’t know me, my 4 children knew the Anderson boys growing up. We have many mutual friends.”I pray that out of His glorious riches he may strengthen you with power through his Spirit in your inner being”Ephesians 3:16
I sit here weeping…remembering… You are indeed in the best place for Allistair and all. May you have the sweetest, most tender of memories caring for your sweet girl. It’s all about comfort now and looking forward to ultimate healing. It’s so desperately hard, and I am so so sorry. You are in our prayers and I love you.
You don’t know us. We only know you through your posts of the past years. You are all in our thoughts and prayers. We send you love.