And So It Begins

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IMG_2272Each night Allistaire crawls to the head of her bead and turns off the flashing “sea urchin,” lights and tears a link from the paper chain.  The chain is still eight links long, but ten have been torn away, time stripping down.  Each morning my alarm goes off in the dark, despite all the mundaneness, the normalcy, I find myself a bit surprised we are still here, still doing this.  I stretch out on a bed that later in the morning will fold into a couch and always marvel at how it is the most comfortable, in this one room out of three in which my life is spread out.  Three bottles of contact cleaner.  Three tubes of toothpaste.  Bags.  I live out of bags.  Bags coming.  Bags going.  And each evening I wash the day’s dishes in the tiny white porcelain sink and am surprised to find another day ending, light gone and moon rising.

Each morning I settle into a quiet spot in Starbucks and drink my double tall, extra-hot, caramel latte and eat my bacon gouda sandwich, looking out the window, gazing but eyes not seeing, wondering, inquiring, inquisitive, curious.  Marveling.  What is this life?  There are so many constraints, bonds, limiting factors, losses, saddnesses, pains that seep out like wounds refusing to heal.  I am walled in, cut off, restrained.  I saw my cross-country skis when I went home, still wrapped new in plastic from a year and a half ago.  My hair shows countless wily grays, rising perpendicular from their counterparts, defiant, declaring their independence, shooting outward at odd angles, more wrinkles gathered around my eyes.  Life proceeds forward with regularity, and we?  We languish.  We circle over and over and over, tight tiny circles, moving between two rooms: Forest Level 7 Room 219 and Ronald McDonald House A Room 362.  Each afternoon we’ve left the hospital on a pass, Allistaire’s little gleeful eyes peeking out over the mask, protecting her from those who might spew viruses into the air.  We move from one room to another room, two small spaces, a figure eight.

For so long we have pushed, straining forward, inertia to get to this point, this first day of transplant, the beginning of conditioning.  “Transplant,” has been the metronome of our days, the ceaseless pound of that one word, the undergirding of all we do, every choice made in orientation to this one goal.  And as the links have fallen away, giddiness has welled, shock and joy that at long last we are coming to the day for which we first came over fourteen months ago.  We are finally about to do what we came to do.  Yet in these last several days, a hush of sadness wafts down like tiny snow flakes, gathering in the cracks.  An odd silence as I take in the lush curve of her cheery cheeks, made more chubby by steroids.  I watch her hands fiddle with a curl, thread back through her blonde hair and I realize how short is the time left with that hair, hair that took a year to grow.  I listen to her happy little voice and watch her eagerness to play, and my heart feels tender from deep bruises.  Oh.  Oh what are we about to do?  What is about to happen to this happy little girl?  As the days have slipped down to two and one, I know that she now, at long last, stands on the threshold of a momentous undertaking.  “TBI (Total Body Irradiation) is like being near the epicenter of a nuclear blast.”  Those words echo quiet, pinging back and forth inside my cranium.  I cannot help but imagine her little naked body, covered in gray ash, devastation and annihilation radiating out around her.  Always Hiroshima with my little one standing at ground zero, knowing I willingly put her there.  “There is a good chance she could die in transplant.”  Late effects.  A broken body, devastated from all the ravaging magnitude of what is to come.

We stand at an open door.

We stand at a door we never thought would open.  With this relapse there was the great fear that she would never get into remission, given that nothing even slowed her cancer before her first transplant.  But remission was achieved and transplant scheduled for March.  Then we watched her heart race at 187 beats a minute as her body agonized to respond to the might of her typhlitus infection.  For two weeks, every other day, she received granulocyte infusions to give her body a means of defense when her own marrow, decimated from chemo, had nothing to offer up.  Fevers and pain meds around the clock, tubes and wires and hoses and monitors.  And at last she came out of that storm and all was peeled away and she appeared herself again, yet now with a heart tattered and weary, heaving, expanding on itself, barely able to exert the force necessary to send oxygen hurtling through all her extremities.  A heart they told us, that would never recover its function.  Round after round of chemo to keep the leukemia at bay, but silently cells continued to infiltrate her flesh, gathering in the open curvatures of her skull, filling and pressing out, gnawing away at bone, forcing her eye up and out.  But what to give her, what will be powerful enough to fight the cancer cells and not also overwhelm her heart that so desperately needs to heal?  Mylotarg.  An anti-CD33 monoclonal antibody drug conjugate, withdrawn by the FDA but made available through Fred Hutch on a compassionate use protocol.  Progress against the cancer but also some sort of infection in the lungs making more chemo dangerous.  Another gift, an attempt at a new therapy, a meticulously designed T-cell sent on a mission to destroy all cells bearing the mark of WT1.  But to no avail, no effect, no ability to slow the onslaught of those cancer cells.  More Mylotarg, more gifts, more open doors.  And behind it all, the compassionate hearts and brilliant minds of doctors sorting through all the details and directing the strategy.  And above and below and hemmed in on all sides, the Lord is at work, closing and opening doors and carefully, meticulously, crafting all the days of these past fourteen months.

We stand at an open door, a door long prayed for, long yearned for, desperate panting, exertion on all levels to open.  And open it He has.  And this morning we walked through.  January 4th, 2016 has come and Allistaire innocently and willingly laid her body down on a little table with a great machine overhead, a machine that would cause a beam of radiation (12 Gy in total) to hurtle through her body, tearing DNA in its path, a mindless destroyer.  She will do this eight times, each time laying on her back and then flipping over onto her stomach.  The first four of eight “fractions,” includes the use of lung blocks, great wedges of a combination of lead and bismuth, to reduce the impact on her lungs; one set for the front and one for the back.  They are carefully set into place on a glass table that sits overtop of her and the doctor checks their placement by X-ray.

Monday through Thursday this week Allistaire will get TBI and then Friday through Sunday she will get the chemotherapy, Fludarabine.  This sums up her “conditioning,” with the intent of myeloablation, a complete destruction of her bone marrow which harbors the source of her cancer and any cancer cells throughout her body.  For Allistaire, Monday is a day of “rest.”  This simply means that there is no treatment that day.  It is a lull.

But really, Monday is a spectacularly significant day.  Monday, January 11th is Sten Karl Anderson’s birthday.  And what gift to give on such a day?  On that day, it will in fact be Sten who is giving the gift.  On January 11th, Sten will sit in a chair for two to three hours with large needles in his veins as his blood is being pulled out, blood replete with stem cells for Allistaire.  On January 7th, Sten will begin five days of GCSF (Granulocyte Colony Stimulating Factor) shots which will prompt his marrow to produce hematopoietic stem cells (HSC) and mobilize them into his bloodstream.  These HSCs are the stem cells that give rise to all the other blood cells in the body.  On the day we celebrate the birth of his dear youngest brother, Jens Hagen Anderson, Sten will begin the process of offering another chance at life to Allistaire.  There is no doubt, these days are a powerful, turbulent combination of joy and sorrow.  We rejoice in Sten’s life beginning and being sustained another year.  We rejoice that he has the uniquely beautiful gift of offering life to Allistaire from his own life, his own blood.  And while we rejoice in the 28 years of life given to Jens and all who have been blessed to know him, we mourn that we no longer have him with us.  Jens will never know 2016.  We mourn that in order to give Allistaire an opportunity to live, we must first bring against her the most powerful weapons medicine has in its arsenal.  We must brutally ravage her body, with the real potential for death, to give her one slim chance to live.

Sometimes, when I let myself go there, when I turn to take the brunt of the sorrows of sickness and death and sin, when I face them head on, when I look them full in the face…I feel such deep agony of pain, a tearing of the sinews, splintering of bones…it is simply too much, I must turn away.  Turn away or drown, turn away or?  How did Christ do it?  How ever did He take on the incomprehensible weight of such brokenness?  Like Moses who could not bear to look full into the holy face of God for fear of death, nor can we look fully into the black.  We cry out, “Why? Why God?  Why don’t you stop this agony?  Why don’t you put all this wretchedness to an end?”  I can tell you this, sickness and death have an incredible power of clarity to reveal how truly broken this world is.  They declare to us that despite all our great intellect and all of our earnest strivings, we are not in control.  This is a double-edged sword, brokenness and finiteness, but isn’t it too gift, gift that this brokenness may end, that it need not be eternal?  Death is a door to the end of brokenness and sin.  Death is a door that, if we kneel to Jesus Christ as God, is the means to eternal life with no more sickness, sin or death.  And you and I might like to scream, with tendons of neck flexed until we go hoarse, “You have done it WRONG!”  We hurl our rage and agony out into the silence, out into a night sky layered thick with stars.  And the stars sing back, not with explanation, not with answers that satisfy, but with a declaration that God is God and He loves us and He has made a way for redemption and for life, and will we bow?

I dwell here, in “the already,” and the “not yet,” a time between times, a time of tension.  I have begun to notice that some of my most favorite songs, songs meant for road trips, for travel, tend to have this interesting quality of two parallel elements of sound.  On the surface, in the forefront, are notes of faster pace, a sort of galloping, running, small, short quicker sounds, building and waning but rising, intensifying, swelling upward.  You feel the tension growing, rising higher and higher.  You long for release, for resolution, for a letting up of the momentum, but at the same time it is tedious, staccato, repetitious.  Below and in parallel, a tandem sound, notes drawn out long, low deep stretched wide, great sweeps of sound undergirding the frenzy above.  I live in the frenzy, in the tedious, in the repetitious, in a tension that builds and longs to be released.  I live in an unresolved state and I ever feel its angst, the thorn that will not be removed.  And yet I listen, I incline my ear to hear that which does not as immediately demand my attention, the sounds that have always been there, the declarations that this life is undergirded.  Sounds of peace, wide broad sweeps across the universe, across time, across this earth and history and ethnicity.  I feel my tension relax as I harken to the sounds that declare redemption has already been accomplished.  Sin and death have already been broken and done away with.  Christ is seated in heaven.  “It is finished,” He cried because ultimately in the cross all has been accomplished, justice and grace.  We finite beings live within the constraints of time, but God is above and beyond and within time.  All has been accomplished.  Only because of this is it well with my soul.DSCN5281IMG_1485 IMG_1491IMG_1354IMG_1346IMG_2559IMG_2560IMG_2817IMG_297111120_10100399384088319_5126860685083336367_nIMG_1066560153_10151311627174094_1955432901_nIMG_3636IMG_3591IMG_0453IMG_0791IMG_1125IMG_1239IMG_1282IMG_1286IMG_1318IMG_179212107786_10153431748189667_4156990417936886173_nIMG_1885IMG_1941IMG_2062IMG_2064IMG_2066IMG_2088IMG_2096IMG_2105
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25 responses »

  1. I am so thankful you guys have made it this far–that the doors have kept opening and that you have continued to have the faith to walk through. Thanks for all the great pictures…. Solveig’s letters brought tears to my eyes, then Allistaire’s buns covered up with her doggie made me giggle. 🙂 We’re still praying for you all; thanks again for taking the time to write and allow us to get a glimpse into your life. Much love, Alison

  2. Praying for you all. So glad you’ve made it to transplant. When I met you a year ago it was a very scary time for Allistaire and your life had once again been thrown askew. I so hope and pray that this is the turn around and Allistaire can keep smiling for a very long time. She’s such a cutie! Thank you also for your rawness and being real. I can’t possibly know what you’re going through but I can pray for you and be thankful for all the steps medicine has taken to give her this chance. It also reminds me to be graceful in my life and live fully in honor of these little ones. I’ll be praying and watching each day for each of you. 🙏💛

  3. As I have prayed, I’ve been like Alistaire counting down the days. As I was reading, I thought of Psalm 68:19 Blessed be the Lord who daily carries us. God is our deliverer. Through all of this, He has carried you all, for no person could have walked this alone. Praying hard-

  4. Oh you guys, the mixed emotions are palpable. What a season right now…I can only imagine how often you sit and think, “where am I? What am I doing? Is this my life.?” Of course you do….its unlike anything I have imagined or being through. I can’t imagine the pressure on your own hearts everyday. We just hold you close during this time of hope for Allistsire and sorrow for Jens. xx

  5. The doors keep opening and I hope and pray for your strength and Allistaire’s recovery. You are a remarkable family.

  6. I’m not sure you would know me, Jai, but I religiously read your conglomeration of joy blog and am so heartbroken and encouraged when I read. I was an RD in Waldock after your time. The Lord has gifted you with written words! Thank you for all you write down and allowing others to participate in your struggle with the Lord over all this. I am compelled by your perspectives and resolutions. I mostly wanted to tell you how much you encourage others in their struggle that you don’t even know. When I talk with people (several recently) about whatever hard thing they are going through I have told them of your situation and your perseverance and they are also encouraged to persevere in their own struggle.
    I pray for you and Allistaire and hope this marrow treatment works.

  7. I’ve been praying for everyone for awhile now. I will continue! with love & a BIG HUG — one of your Journey family — Jessica.

  8. I am Jan Anderson’s cousin and I have been praying for your family And Allistaire. What a brave little girl. I will keep Allistaire and the family in my prayers. God Bless you all.~ Vickie Mason

  9. Jai, I know Allistaire will live and live healthily, that’s the will of Father God for her on this earth. She will be a living testimony of Jesus’ love. No matter what treatment Allistaire will go through, Jesus’ hand is on her and she will come out fine.

  10. Be brave little girl. Be strong mama.
    – love from Nic and Claire in Bozeman

    Isaiah 40:11
    He tends his flock like a shepherd:
    He gathers the lambs in his arms
    and carries them close to his heart
    he gently leads those who have young.

  11. Oh Jai!!!! You are my hero. Not by trying, just by being you in the midst of such relentless torment. The underlying peace from the Lord is so beautiful. Love you sweet lady! Continually praying…

  12. Jai, Sten, Solveig, and Allistaire, have you all on my mind everyday, and will continue to as you walk through this open door. It has been a privilege to read your posts, to pray, and send positive thoughts your way. What an incredible family you are. Thinking of you all in the days ahead. Shannon Fay

  13. Allistaire, you are precious. Your courage and smiles in these pics speak volumes. We pray for you every day sweetheart. We know that Jesus is with you, and you don’t need to be afraid of anything because He loves you so much! (even more than mommy and daddy). Solveig, what a compassionate, beautiful girl you are. I know you bring your mom and dad so much joy. They must be so proud of you! Jai and Sven, thanks for letting us in on your journey. Praying with you

  14. I’m married to Jessica’s (Bjorn’s wife) cousin Bryan. I’ve been praying for you and Allistaire, and your whole family, for maybe a year now, since whenever Jess started sharing your blog on her FB. Bryan’s brother is a brain cancer survivor of 20+ years, so your journey really hits home for him. Anyway, just wanted you know there are people down in Tucson praying! My two little boys, ages 6 and 8, pray with me for Allistaire. Thank you for your beautiful writing. Praying God’s peace for you all, and healing for your precious girl.

  15. Jai,
    What a moment to interrupt today! I know you didn’t mind. I sent you a private message on Facebook (which I don’t use often), by way of explanation. So much love to you all,
    Libby

  16. My daughter Ally attends Petra as a third grader. I also have a son in first. She remembers singing happy birthday to Allistaire last year at Petra. She has recently been asking me about Allistaire and how she is doing. Karen Degroot gave me your blog. She kept asking me to find out. Although Ally never met your daughter, she really wants to help in any way. Her 9th birthday is on February 5th. She had planned on taking donations for kids that have cancer in Bozeman. I told her about what is going on with Allistaire and she would like people to donate money to you or your hospital. She said to tell Allistaire she is praying for her every night. If it is ok can you tell me where I would give the donations to? I know it’s not a lot but Ally has a big heart and would like to help in any way she can.

    Praying for you and your family,
    Becky Wheeler

  17. There are really no words. Thankful that Holy Spirit knows(Romans 8:26)… We are praying for your daughter and your family.

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