Tag Archives: Jens

Jan4

And So It Begins

Posted on January 4, 2016 by Conglomeration of Joy

Each 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.

Sep23

Post T-cells

Posted on September 23, 2015 by Conglomeration of Joy

Standard

I wonder how many times a day I see a bald head, a sweet face with that pale yellow tube leaving the nose, taped across a cheek.

September is Childhood Cancer Awareness Month. My Facebook feed is literally packed full with pictures of kids with cancer. Some with bald heads and sporadic hairs, tiny emaciated bodies, dark circles under their eyes. So many dead kids. Accounts of brutal treatments, how many rounds of chemo, of radiation, of antibodies, surgeries. This is when we pull out all the stops. This is when you drag out those dark pictures, the ones without the smiles, the ones you can hardly bear to look at. These are the silent screams that declare, “DON’T LOOK AWAY.” Many of these faces I know. Others are friends of friends, scattered across the country. Of course there are also the pictures of happy, bright faces, eyes that shine. These are the pictures that hope you realize these are just ordinary kids, they could be your own. These are the lives that we are fighting for.

The last week and a half has been incredibly busy and at times brutally stressful and hard. Even now I feel the tension that lately never seems to leave my neck and shoulders, clamped down like a vice, a viper with its fangs gripping the back of my neck. I know, I know. I must seem mellow dramatic. But do you know what it’s like to see your friend’s kid with the leukemia literally pushing its way into their mouth, sweet lips that can’t even close over the intrusion. This is the same sweet child that only months ago joyfully walked the hallways of the cancer unit with little shoes that squeak with each step. These two girls fight the same beast, Acute Myeloid Leukemia. Allistaire’s eye is looking off again. Something doesn’t seem right. I fear these T-cells haven’t stopped the onslaught. She rubbed her jaw today, saying it hurt. She didn’t cry. Within 15 minutes she hadn’t complained about it again. But pain in her jaw, so close to her eye where we know there’s cancer…I am surrounded by cancer, drowning in it.

I wrote the above on September 11th, eleven days ago. I could taste cancer on my tongue, some sort of acrid saliva. The very cytoplasm of my cells seemed to swell with the dominating presence of cancer. I wanted to scream and run, with fury, with rage, with terror, with ragged exhaustion, with desperation to flee, to at long last burst through that glass wall that isolates and corals us off from the life for which we so long.

For nearly two weeks Allistaire seemed to be growing literally more and more crazy. Without exaggeration, I thought she was headed for some sort of psychic break, dragging me along right behind her. Some sort of terror, fear was building in her, mounting to some peak or perhaps plunging to dark depths. She would repeat to herself, “I’m afraid, I’m afraid, I’m afraid.” Afraid of what? “Afraid of throwing up, afraid of I don’t know.” Meds, which she must take three times everyday, 24 doses in all, became an epic battle sometimes taking an hour, sometimes resulting in her throwing up and having to do it all over again. She was completely irrational and nothing I could say seemed to get through her crazed state. The intensity mounted. Everything depends on her getting those meds in. Her tummy pain was increasing. She ate less and began to lose weight. A feeding tube loomed. “It either goes in your mouth or up your nose,” I tell her. I felt like I was failing on the two tasks most directly entrusted to me: getting her to eat and to take her meds. Our days felt frenzied. When my eyes opened to meet the day I would feel dread smothering, knowing it was only a short while before it would be time for her to eat and take meds again.

I was frantic for help. Karen, our PAC (Pediatric Advanced Care) Team person provided a referral for Allistaire to see the child psychologist. For the first time in my life and certainly in Allistaire’s treatment, I realized her little mind might really benefit from meds to help her calm down. I only hoped I could make it through the week until we saw her. We also had a GI (gastrointestinal) consult to try to sort out the tummy pain she’s been experiencing. It’s hard to know how much of the pain is anticipatory and in her mind and how much is real. After her incredibly severe typhlitus infection and the more recent ileus, it would be really great to know what’s going on inside and if there’s anything that can be done to help. But prior to these appointments, she would see cardiology for yet another echocardiogram and EKG.

On Tuesday morning, 9/8, I brought my bright green sticky note to Allistaire’s lab draw. “Digoxin,” was scrawled across in black ink. When Allistaire was inpatient for her ileus, a Digoxin level had been drawn with labs one day and showed that since she wasn’t taking her meds with food, it wasn’t being as well metabolized and so her dose was increased along with several other meds. Once her ileus resolved most meds returned to their pre-ileus dosages. Soon after she was discharged from the hospital, I called to ask the cardiologists about her Digoxin dose and to see if we needed to test her level again as they hadn’t adjusted it. I was told then that it was fine for now and would be retested in 2-3 weeks. I asked the nurse drawing labs Tuesday morning and was told it hadn’t been included on that day’s lab orders but could be added up to 8 hours later. Next I whipped out my green sticky note for the cardiology nurse and she said that Dr. Hong had mentioned wanting to get a level.

So it turns out Allistaire’s Digoxin level was 5. The goal range is .5 to .8 with 1 being fine and anything over 2 being bad news. Digoxin originates from Foxglove and in high doses can be very toxic. Her Digoxin was immediately held in order to get the level down. It wasn’t until about a week later that I thought to look up side-effects of Digoxin toxicity. Though these are listed as “less common”, I’m guessing having a level that is 5 to 10 times higher than desired might amp up these effects. “Agitation or combativeness, anxiety, confusion, depression, diarrhea, expressed fear of impending death, vomiting, loss of appetite, weight loss, low platelet count.” These are just the ones listed that seem to directly relate to what Allistaire was experiencing. In addition, her Pozaconazole level, an anti-fungal, was about 4,000 when the goal level is 700. Some “more common” side effects of pozaconazole are, “abdominal or stomach pain, body aches or pain, confusion, diarrhea, nausea or vomiting.” Other less common effects include “anxiety, change in mental status, mental depression.” Again, I have only listed those side effects which I specifically saw Allistaire exhibit. I only thought to look up side effects later because of the dramatic improvement she made once her Digoxin was stopped to get the level down and the pozaconazole was nearly cut in half. There was a night and day difference. The girl who fought me for an hour on meds can now take them in 3 minutes. She is not afraid anymore. I did switch to lactose free milk at the same time her pozaconazole dose was decreased, but either way, her stomach pain has reduced to nearly nothing. She has been doing a much better job eating and has actually gained back some of the weight she lost.

Her other big cardiac med change was the exciting switch from Enalapril to Entresto. Entresto is a drug newly fast-track approved by the FDA this July for heart failure. In a massive, well-conducted trial, Entresto was compared to Enalapril, the leading heart-failure med, and shown to have significantly greater impact. The heart-failure team first told me about it way back in February or March. I asked Dr. Law about it in August and he said that it had just been approved but it has never been studied in children and he wasn’t sure the hospital would approve him prescribing it, if even it was available. The man, who is typically quite mild-mannered, was visibly excited about it. So Allistaire began her first low doses of Entresto a week and a half ago. Assuming her blood pressure doesn’t bottom out, they can continue to increase her dose until it reaches the optimal level. This is exciting given our utter dependence on her heart improving for any hope of curative cancer treatment.

While the calculation of her ejection fraction on this latest echocardiogram was less (previously 41 and now 37), Dr. Hong said the function of the left ventricle squeeze looks the same and there was actually significant improvement in the dilation of her heart. Her left ventricle went from 4.7 cm to 4.2. A year ago before all of this, it was 3.9cm. A dilated heart indicates a heart working too hard and quite ineffectively. When I think back over the last 9 months, I am overwhelmed at how rough the road has been, but the truth is, it has been vastly better than it could have been. I will never forget the sensation of my legs falling away beneath me as I read that horrifying echo report in March where her ejection fraction was 11. I will never forget the solemn nods of affirmation in our subsequent care conference when I said, “So in summary, none of you think she’s going to make it.” The cardiologist said there was pretty much no way she could recover her heart function. A weak heart cannot begin to endure all that is necessary to beat AML between hard-core chemo, intense infections and simply unbearable pain in transplant that necessitates everything going into the body be given by IV. And yet here we are, here we are. With tears immediate, I smiled a great heaving smile with cheeks pressing up against my eyes when the cardiology nurse, Jen, told me Allistaire’s BNP was 51. FIFTY-ONE!!!!!!!!! This was the very first time Allistaire’s BNP, a measurement of heart distress, had ever been in the normal range of 0-90. On the day of that wretched, heart stopping care conference in March, her BNP dropped from the astronomical height of “greater than 5,000,” for the very first time in weeks. Gosh this has been a crazy-making, exhausting, brutal road but I laugh out loud with joy for the number of times we have been told that Allistaire just won’t make it and then she just keeps going. Maybe she won’t. But she has overcome what has been described as insurmountable obstacles.

How many times have I called out to You for mercy Lord? Mercy. Mercy. And He has, over and over and over. Thank You Father for all the days you have sustained us!

Wednesday the 9^th arrived and we got to meet Joanne, the psychologist. I left feeling encouraged that there might really be some tangible ways to help Allistaire learn coping skills and overcome her fears. That day we also met with Taryn, her new hospital school teacher, who schedule allowing, will meet one-on-one with Allistaire for an hour on Wednesday and Friday afternoons. I won’t lie, I find myself zooming past the endless Facebook posts with “first day of school,” pictures. All those smiling faces with cute outfits by the front door with chalkboard signs declaring the next grade, sobs choke my throat and I try to turn away. This is Solveig’s fourth year of school in a row of which I will miss significant chunks. I missed her first day of 2^nd and 4^th grade. And Allistaire, her first day of preschool last year was nothing like I had hoped or imagined. She cried with no way to be comforted for hours. It was her arm. Her right arm up near her shoulder where a month and a half later we would see evidence of leukemia eroding the bone. Of course she was crying. Her cancer was literally eating away at her flesh. This is not what I thought my daughters’ elementary years would look like. It grieves my heart. I turn away from my visions of what I think “should have been,” and focus on what is our reality. This is the land the Lord has given me.

Wednesday morning also brought a significant turn of events. In my heart, back in the corner, in a place unwilling to stand out in full exposure of light was a secret hope stowed safely away. I wanted to bring Allistaire home. What I really desperately wanted was two weeks at home with all four of us. The problem was that Allistaire had a clinic appointment at SCCA on Tuesday, 9/15 with a lab draw for the T-cell research study. So the night of the 15^th would be the earliest we could head home. Bordering the other end of a trip was the necessity to re-stage Allistaire’s disease. Dr. Cooper had recommended doing another bone marrow, brain MRI and PET/CT three to four weeks after the T-cell infusion. Given the changes I had been seeing in Allistaire’s right eye, Sten and I did not feel in good conscience we could delay even a week which would on one hand give us an additional week at home and on the other given that blasted cancer one more unfettered week. This meant we’d have to be back in Seattle by the 21^st. But that morning I received a wonderful call back from the research study nurse who said there was no reason that Allistaire couldn’t be seen in Bozeman and have the research lab drawn there and simply Fed-Exed back to Seattle. There was a moment of elation and then it was game on. To get Allistaire out of Seattle required an extraordinary amount of coordination and details especially now that her care was being coordinated between Seattle Cancer Care Alliance, Seattle Children’s Oncology, cardiology and our beloved pediatrician, Dr. Angie Ostrowski, in Bozeman. This meant making sure I had sufficient quantities of all her meds, dressing and line care supplies, and clear orders on how to deal with fevers, infections, fluids, blood pressures, labs, transfusions and clinic visits. Thursday she got tanked up on platelets and on Friday we spent the first half of the day at the hospital while she got red blood before we headed off to the airport. Allistaire was literally beside herself with joy. She could not stop squealing. She would shake her head in awe and stutter to get out the words, “ I can’t, I, I, I can’t believe it! We’re, we’re going home!”

On Friday night, September 11th, fourteen years after the Twin Towers fell and changed America forever and five months after my sweet brother-in-law, Jens, died and changed our family forever, Allistaire and I boarded a plane bound for Bozeman. She skipped. She hopped. She laughed. She squealed. Her eyes were bright bright bright. She was excited about everything!!! At long last the time came when we walked through the security doors in Bozeman and into the arms of Sten and Solveig. I cried with joy, with sorrow weakening my legs.

We didn’t do really much of anything exciting. We just spent the next eleven days together. Chocolate chip pancakes at the kitchen counter and the girls running around the house, laughing and coming up with strange horsey games. Emptying the dishwasher and waking to the sight of tall evergreens and swaying grasses outside of my bedroom window, knowing Sten lay next to me in the night, wind chimes in the breeze and a shocking array of stars and thick gauze of Milky Way, morning stars and elk bugling, watching a massive rain storm heading east over the valley, engulfing hills in gray mist, waiting for the tell-tale stirring of leaves and fir needles as the wind approaches, light slipping away and at long last feeling cool rain drops on my face. Extravagant. Luxurious. The girls playing on the driveway in the bright sun of a windy fall day, attempting to fly the dragon kite and eventually asking to walk up to Grandma and Grandpa’s. I tugged at weeds and pruned raggedy bushes, defied the bur weeds and stood with all my body weight on the shovel to remove ugly shrubs. My arms thrilled at the fatigue of pushing the wheelbarrow up the hill over and over again to the burn pile. Hawks circled and screamed in the wondrous blue above. Chipmunks with elegant little black stripes flitted about the yard. Aspen leaves shuddered in the wind, flashing green and yellow. Familiar faces, missed, loved, at Solveig’s school fun run where she proudly protected her little sister. Solveig. Oh Solveig, giggly girl with gorgeous gray-blue eyes, flecks of green and brown, ever rosy cheeks. Tucking her in for bed each night with a blow-kiss to end the day. In town, sweet friends at the school, at the soccer field, everywhere faces that love us, miss us, pray and cheer us on. Cheering on Pam as she ran her first marathon to help fund childhood cancer research. Running a short stretch with her toward the end – marveling at how the crossing of brutal paths has brought about this flourishing treasure of friendship – proud watching my friend persevere, propelled to push through the pain because of those 26 kids’ names neatly written out on the card pinned to her shirt. Allistaire laughed and laughed as she stood in the lake at Hyalite, ripples shimmering out around her in endless rings. “Is this better than Ron Don?” I asked. Smiles too big for her face as the fire light wavered orange, reflecting in her eyes and instruction on how best to roast a marshmallow. “Is this better than Ron Don?” I asked again. “Everything’s better than Seattle,” she declared with satisfaction.

Everyday I flushed her lines, took her blood pressure and temperature and gave her meds, encouraged her eating. But cancer, other than that wonky eye, sat in the back drop, it’s yell not so dominating over the hush of grass in the wind, of blue expanse of sky, of sleek brown horses flicking their tails, of rain storms and deer in the evening, of creeks tumbling over rocks and two sisters laughing, laughing, Sten and I smiling. I see that eye, that right eyeball that bulges just a bit, too much white showing under the pupil. I see it. It demands my attention, fairly screaming its urgency. But I tell it, “shush.” Be still. Be still. What will be will be. We’ve faced terrifying prospects many times before and yet she runs and laughs and bursts her bright being into the world. She may yet be given open doors, she may yet thrive. And if not…if not? Well, love her all the more Jai. Love her fiercely. Let go the insignificant things. Cherish. Savor. Focus in. See the beauty and life bursting right before me. Listen to the sweet lilt in her voice, watch her mind try to sort out how things work in the world, delight in her childish perspective. Sit and watch. Observe. Take it in. Swell with the incalculable delight of now. We are guaranteed so little in this life. We have insatiable desires, ever grasping for more, for better. But pause. Pause. What here? What bounty have I swept past, swept aside in pursuit for something more. I am deprived because I refuse to slow, to stop, to dwell in this present space. Somehow, imperceptible millimeter by millimeter the Lord is etching His ways into my heart. My spirit turning to His.

It’s early evening, Tuesday the 22nd of September. Fall is here. Warm light skims the ivory blanket, reflecting back against the far wall of our Ron Don room. Outside the city buses drive by, waning light seems to illuminate from within thousands and millions of green leaves, draped in layers and layers of organic veils like pieces of stained glass. We arrived back in Seattle late last night and got to the hospital by 7:30 this morning. It was supposed to be 45 minutes worth of procedures – a bone marrow aspirate and biopsy, intrathecal chemo, an endoscopy and a flexible sigmoidoscopy. We finally left about 5:30pm. After two hours of waiting in the pre-op area, labs drawn earlier revealed the need for yet another platelet transfusion, the previous only two days ago. So upstairs we went to the Hem/Onc clinic to wait for STAT platelets and the hour to get them in. Then back downstair to wait for the anesthesiologist finish his case because he had graciously insisted we were going to get this all done today. All went well and he determined that Allistaire’s heart is now “robust” enough to no longer require cardiac anesthesia. The GI doc was also pleased because all looked well with the exception of one overt and easily treatable problem. Apparently Allistaire has a whole lot of hardened stool backed up in her colon that he said can actually cause pain on par with a burst appendix. The fix is a big time dose of laxatives over the next several days to clear her out. All was well in recovery initially but then for several additional hours she struggled with extreme nausea and threw up dark reddish brown flecks of blood from the multiple biopsies that were taken. She sleeps now, Doggie tucked up under her head.

On Thursday Allistaire will have a brain MRI, a PET/CT and a CT with IV and oral contrast. This will both provide additional information about her gut and, along with results from the bone marrow test, help give a clearer picture of where things stand with her leukemia. A little over a month ago, pneumonia was discovered in her lungs from her previous CT. Dr. Ostrowski heard weezing in her lungs last week, though the anesthesiologist did not today. She’s been on antibiotics forever and was switched to an even broader spectrum anti-fungal once the pneumonia was discovered. Her ANC has been relatively decent so everything is being done as far as I can tell, to combat the pneumonia. The state of her lungs could impact her options going forward if more chemo is needed if the T-cells are not able to keep her cancer at bay. Interestingly, her persistence research labs from Day+14 from the T-cell infusion show that the percent of the genetically modified WT1 T-cells has actually increased from the Day+4 persistence labs up to about 10% from 6%. What this means as far as how effectively the T-cells might be working is unclear. It does, however, direct the course going over. Only once the percentage drops below 3% is the second and final infusion of T-cells given. This means at this point there is no plan in place for the second infusion and Allistaire has been officially been dismissed from the care of Seattle Cancer Care Alliance back to Seattle Children’s. She has tolerated the T-cells incredibly well with no known side-effects which is a great gift when dealing with experimental treatment.

As is ever the case, the days ahead are utterly unknown. The nurse today asked Allistaire what she’s going to be for Halloween. Halloween? Are you kidding? That’s a million years away. Our life is lived in less than hour increments. Last year we planned for the girls to trick-or-treat along Main Street at home in Bozeman with a party to head to afterward. A week before Halloween Allistaire’s relapse was discovered and 24 hours later we were headed to Seattle. I saw my friend Megan on the soccer field on Sunday. Her husband told me what field to look for her at but as I scanned the folk before me I realized I had no idea how long her hair was. We met at Cancer Support Community with her bald head and blue eyes as she battled lymphoma. She told me of being shaken by the news of her friend’s son being diagnosed with a brain tumor just days after he and her daughter had played together. He is one of two new cancer diagnoses of children in our town in the past few weeks. “I don’t take having my kids for granted,” she said.

“I feel like flesh rubbed raw,” I told my mother-in-law. Every touch, no matter how light, brings stinging pain. My reserve is wiped away. I have no buffer. The pain just penetrates immediately. Sometimes I gasp, fighting to get air, wondering how to keep going, disoriented by circumstances ever outside of my control that change constantly without warning. I read some simple yet profound words by Paul Tripp that met me right where I was, where I am. A friend shared a song. A song I’d like to wake to, to end my days with. The Lord provides. He hems me in behind and before. He goes behind me and breathes life into death, redeeming the brokenness, the loss, the ugliness, the sin and death. He guards my right foot from slipping. He is invites me to dwell in the shadow of His wings. He goes before me, sovereignly orchestrating the days ahead. He lays down provision, provision that I cannot yet imagine nor even know I will need. He gives me manna, sustenance each day. He destroys. He annihilates. He ravages. He calls me to harken to His voice that says what this life is about, what it’s not about. Damn the closet doors. They don’t matter. Forget that stretch mark strained bulge of fat on your belly. Let go. At long last release that white knuckled grip on what you “think” this life ought to be. Rest. Rest. Dwell now, here, in this fleeting moment, in the ragged land punctured through with un-doing beauty, with sights too glorious and too painful for words.

But sometimes I just flat out tell Him, “NO!!!!” I don’t want what you have for me God!!! I want this to be done. I don’t want this pain. I don’t want this chaos. We’re in the ER now (Wednesday morning). Allistaire continued to throw up and I had to call the Hem/Onc Fellow on-call last night. She took some of her meds but then threw up. She essentially hadn’t had almost anything to drink since the night before. I was worried about her getting dehydrated. She moaned in pain all night long but didn’t actually throw up until 5:45am. This time it was that dark green bile I had only ever seen during her ileus in July. Dread swept in. But right before she threw up she pooped which meant her gut had moved. A few hours later she threw up the green bile again. Immediately afterward I made her take all of her meds which she was able to keep in for over an hour which meant that hopefully they were absorbed. I called the GI clinic who instructed us to go to the ER to get her assessed. She has continued to throw up but is on fluids now and the CT w/contrast that was scheduled tomorrow will happen today as soon as we can get the oral contrast in. The thought of another ileus and the adjoining hospital stay is daunting.

I tell God, No, this is too far, too much. This has to stop. But who am I? What is the purpose of my life, of Allistaire’s? Is it not ultimately to know God and make Him known? Isn’t it really about yielding to His will because the source of His will is His love for us, His goodwill to all men, His desire that all might come to see Him as He is – the only source of true life? Am I really going to say No to that? Because that is not love. Love yields and sacrifices for the good of another. That is what God is calling me to – Jai, will you lay down your life for another? Will you lay down your expectations and declarations of what you think you deserve and trust Me to walk you through this life in a way that allows My beauty and truth to be seen? I used to think I wanted to be a missionary. I had visions of jungles and Africa. But isn’t being a missionary really just saying Yes to God that where you are is where He wants you? Who am I to define the boundaries of the mission field? What if there’s one conversation with one nurse or one fellow parent that this is all for? What if there is one day that all these days will have brought me to that is the day the Lord moves in the heart of another through our brutal road? Will I love? Because loving others means yielding to the Lord right now, here. Man it is so very hard to do because everything in me rages that this is all fucked up! And it is! It is! Christ came into the world precisely because it is a mess and fundamentally broken. God could have fixed everything that very moment it broke, but He didn’t. Christ could have brought everything into redemption when He walked on earth but He didn’t. God has been at work from before the beginning. He is an epic God. His scale is far vaster and more complex than I can begin to imagine.

One night at home this past week, Sten and I sat on the deck in the dark, looking up at the staggering beauty of the star filled sky. I asked him about one particular cluster of stars. He pulled out his iPhone with the snazzy app that’s supposed to allow you to point your phone in the direction of the stars of inquiry and it will show you their names and the surrounding constellations. As he fiddled with the settings we discovered the app also allows you to see not just the visible light spectrum part of the sky, but also you can see it based on the gamma rays and x-rays present. Each selection on the app allows you to “see” a different portion of the electromagnetic spectrum the our eyes cannot detect. Eleven years ago I taught Physical Science to 9th graders. I found myself swooning whenever we discussed the electromagnetic spectrum – so much reality always right there but utterly invisible to me. My eyes, my body, my senses had no way to detect infrared light or radio waves and yet, they really were there – if only I had a way to “see” them. I believe the way the Lord knows and sees the universe and time is a bit like the electromagnetic spectrum. He can see ALL that is there, that is real, at once, in full clarity and detail. I, well, I can only see the smallest segment of the vast reality that is.

Paul Tripp’s words that helped me last week

“It is Well” song that encouraged me

Jun24

Wednesday…come and gone

Posted on June 24, 2015 by Conglomeration of Joy

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Maple frosting flakes off my scone onto the table top. I pick up each little tidbit, placing its happy sweetness in my mouth, the sun reflecting in the warm gold of the table’s wood grain. Even as my fingers grasp the delicate skin of sugar my mind contorts asking if it’s really a good idea to just pick something up off of a table and put it in my mouth, I mean you do realize you’re putting whatever is on that table straight into your mouth. You don’t know what’s on that table. You’re flirting with danger. That’s not a good idea for Allistaire, you could get sick. In defiance or fatigue I eat the frosting, licking my fingers. Maybe I fixate on the warmth of my latte and this maple pecan scone because I am procrastinating setting my fingers to this keyboard. Maybe I eat sweet decadence and feel the satisfying warmth of coffee down my throat because it feels like caring for myself, feels like the tender bandaging of wounds, of soft humming over tears.

The sun flickers through the heart-shaped leaves of the Katsura tree outside the window. Why when I had a bit of time this afternoon after my meeting, did I head into the heart of the city and pay for parking, all to go into Anthropologie? Am I materialistic? Yes, yes I am and I wrestle it. But too, Anthropologie is a feast for the eyes, groupings of color and pattern, of plant life, wood and ceramic. There is a restfulness and cheeriness too to that beauty. It is the closest thing to walking into my house. Oh how I just long, long, with aching yearning to be home, to dwell in a place that is my own, that feels safe, that is familiar, that is of my own making, that is not intruded upon, that is not dictated by others. I long for ordinary common life of grocery shopping and making dinners in anticipation of seeing Sten driving down the driveway, coming home, calling in the girls from the adventures in the yard, of looking out my kitchen window at the Spanish Peaks, of cows grazing in the meadow below, of aspen leaves flickering in the sunlight of June afternoon. Rare is the occasion that I allow myself to even conjure these images, the tears just flow, the sorrow lancing out of me leaving me even more worn. So I go to Anthropologie walking in the midst of beauty of someone else’s expression of creativity, trying somehow to satisfy that craving to create, to put my hand to craft, that desire that has no outlet.

I circle my computer, giving it wide berth. It sits silent in my bag but demands that I attend to this blog, this accounting of Allistaire’s flesh, of my heart, of this ragged road I trudge, my feet tripping over stones, fatigue weighing down my legs, pressing my face flat. Sometimes I want to yell back, “What have I to say? What?!” For when I sit to write, really I am calling out again, not just at night as tears slip hot down my cheeks, not just during the day as I plead for patience, for wisdom, for grace with Allistaire as I battle her over food, over taking meds, I am calling out to the Lord. What do you have to say oh God? What answer do you give to my weeping, my raging, my flat silence, the groaning of my spirit, the trembling of self exhausted? I need more Lord! I need new! And sometimes it just seems like silence and I yell all the more and I cry out, do you hear me?!!! And I question if He’s really there. And I consider whether or not all my beliefs amount to nothing more that wild speech and desperate absurd hoping. This query ever turns to smile in the midst of my tears. Look at the beetle in all its wild extravagance of color, pattern and fanciful design. Does not the beetle reflect in Technicolor the glory of the Lord? The feather, the leaf, the shell, the flower, the seed…oh do they not all answer back with endless hallelujah that the Lord IS GOD?!!!!

So I yield, I bow, No, I fall flat before Him again. I tell Him, I worship You, I really do fall down in adoration of You, because Your beauty…it just stops me in my tracks, it stuns me, it shuts my mouth and I cry because You are too much, too gorgeous, too resplendent. But God, but God, do you see me? Do you see me here, with my face on the ground, my heart tearing from sorrow. Do you not see how broken I am, how spent, how undone, how torn and shattered, how desperately weary? What do You have to say to me? Be not only a majestic God, far off, above with eternal plans. Oh Lord, my sweet God, hear my cry, come down, come down low, come down to this dirty ground with me, meet me in my desolation. Can I ask such a thing of God? God of creation? God of eternity? The Ancient of Days? The first and the last, the beginning and end, the alpha and the omega? But I do, I do! Come Lord I plead, incline Your ear to me, bend low and look into my fearful eyes. Oh Lord I need to hear your voice, I need to see your face, I am faint and need to hear your voice. Don’t I love you as much for your condescension, for your coming down as for you greatness, you vastness and infinitude incomprehensible to me? Perhaps more, perhaps more. Perhaps it is that You, God of the Universe, creator of all things, sustainer of the universe, You who holds the elements together, don’t I love you most that such a God as You would see me, this vapor, this flower that fades, that you would love me, that you would care for me, isn’t this what makes my heart sing of your name, because of your tender love, your gentle hand. Oh Father how I need you.

But I tell You how You must show up. Don’t You see my sorrow? Don’t You see this expanse of eight long months fighting this relentless battle, separated from Sten, from Solveig, from home, from family and friends? This battle doesn’t let up and I need more, you see Lord! And I despise what feels like silence and I do not want to accept that what feels like a slow smile on Your face. My 21st Century Western-American self wants the next version. I want the upgrade. I need the upgrade. Yeah, that was good Lord but now I need more! Thanks for that old comfort, that admonishment of long gone days but I’m looking for a new word, to hear your voice provide me something that meets me now! Silence. Silence that feels like abandonment. Silence that feels cold and uncaring. Silence.

He speaks, speaks in His silence. His silence tells me, my child, I have already given you all that you need. I have already provided for you in abundance. “Therefore, do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Well thanks a lot for that Lord. What good is that old trite, worn out saying? How is that going to help me here, now? “Eat the manna.” Hmmmm. Yeah, yeah, yeah. Same ole same ole.

But He’s right. I can pass over those old commands, those words as familiar as the curve of my nose. So common they’re hardly visible. I can disregard His truths because I’ve heard them before but I am fool to do so. The Lord is telling me, I have already given you instruction on how to live these brutal days. When I scoff and belittle His words, I lose. I’m left floundering. Panting and worn out. Brittle. Exhausted. I weary of who I am. Where is the water to satisfy, to cause flourishing? I want to be the tree planted by streams of water, bearing fruit in season, even in wilderness. Why deprive myself? Why leave the path of the Lord? Because it has become ordinary? Because I weary of perseverance? He draws me back. He woos. Entreating me, inviting me to once again rest, rest. Will I worry about tomorrow? Or will I worship Him as the God He is – will I entrust all my days to Him. Oh my flesh flails and rages, wild with the desire for control, to be the one who decides, because I only see my tiny finite view and I bellow with cries for what I want. A child in a tantrum. The Lord asks me to look up, to lift my eyes, to take His hand and rest, allow Him to lead. Will I consent to the simplicity of living this day, this hour, this very moment to its fullest? My weak flesh stomps its foot and declares, “But I’m just tired of having to do that. I want to be done with this hard stuff. I’m ready to satiate my desires. I want the good life now, here.” Do I really believe what I say I believe? Is this life what the Lord says is true or is it what my flesh proclaims is most important, significant, essential?

I shake my head, clamp my eyes and open again. Baffled, I think, shouldn’t I be fine with all this by now? Shouldn’t this be normal? Shouldn’t I have figured out how to live this life after so long a road? I circle back, wandering in weary heart from the Lord and then I circle back. Over and over again, I return to Him.

It was a spectacular sunny Saturday morning. Allistaire, with glee on her face, climbed the stairs and sped down the slide over and over. The air was alive, bright, crisp blue skies. We have to go Sweets, I tell her, we have to go now. Her shoulders slump and her smile turns downward, feet grazing the ground. I try to make the best of it but inside I grumble that we have to leave this lovely life, this world on the outside, and go sit in the hospital for hours to get a blood transfusion. I sit in the darkened little clinic room scanning Facebook when I come upon a post about a 14-year-old girl, Ahmie, whose mom is praying for her quick and quiet death as tumors fill her body. Awareness floods my body, heat, suffocating. This girl has cancer, she’s been being treated here at Seattle Children’s and she is dying. Likely today she will die and her mom will never hear her voice again nor see bright joy in her eyes. I turn away from Allistaire to hide the tears that overwhelm me. Hot, tight, hard to catch my breath. And I scramble, where is that verse, where is it? I must read it now. What does it say exactly? All I can think is “LORD GOD! Do you see this? Do you see what’s happening here?” My flesh fails, it groans, it groans. All I can think is, “The whole creation groans,” waiting for the Lord to return, waiting for the redemption of all things. And I have to be thankful that my girl is merely lying on a hospital bed on a beautiful Saturday getting blood. Things could be so different. What an agonizing prayer that mother is praying. What a horrid thing to have to ask the Lord for.

I find the verse. I read the verses just before and after, and then, well I have to read that whole chapter. Romans 8. Wow. I sit stunned. I’ve read it before, so many times before, but wow, wow. The little boat of our life had drifted and Romans 8 was like a great tether, binding us back into His truth, connecting all the maddening details of our days, lassoing, binding, weaving ourselves and our lives into the magnificent abundance of who HE is and what He proclaims this life to be about. I circle back. I’m invited to rest. He extends His arm, His hand and asks me to trust Him, that He is in control, in a glorious way that is beyond my imagining. His finger points, directing my gaze to the manna, the sustenance, the nutrients of this day, this hour, this moment. He reminds me that I am not alone, though I feel my whole world in a tenuous shatter, a terrifying vulnerability of completely unraveling. I am bound into Him, by Christ, by His Spirit. So do not mistake the simplicity, the familiarity of His instruction as something common place, as weakness, as insufficient, as elementary and unsophisticated. Romans 8. Wow. If I had one piece of paper to read the rest of my life it might be that chapter.

As I write, Allistaire’s eyelids flutter, and there is a distance in her gaze as she goes under, as her consciousness wanes. I laid her down on that narrow bed, the one that will slide into that great whirring circle of the mysterious machine, the one that will produce an image with brightness where there is increased metabolic activity, cancer. Then a CT image will be overlapped to reveal any masses present, a complete picture of her disease outside of her marrow. Still sedated, they’ll wheel her down the hall where Dahlia, the nurse practitioner, will plunge the great needle into her right hip once again, for the 21st time, to pull back a sample of her marrow. That wee vial will then make its way to the pathologist who will peer down at cells smeared on a slide, looking for evidence of flesh gone awry, of a creation broken, of cells groaning for redemption. The pathologist at Fred Hutch will then send more cells from the sample, joined to radioactive isotopes, speeding past a laser – each struck with light causing an electron to be disrupted, its fall documented by a wave-length of light. A scatter plot forms and zooms in the search for even the most remote evidence of leukemia. By the end of today I should know the results of the PET/CT, tomorrow will yield morphology results and either by the end of Thursday or Friday we will know results from Flow Cytometry.

I feel chased by two wild hounds, snarling, rabid. I grip Allistaire’s hand and we keep running, running, trying to outrun their ferocious intent to take her down. Cancer on one side and heart failure on the other. Her BNP was rising, all the way to 820 last Saturday and her ejection fraction was dropping, down to 26 a week and a half ago. I knew this bone marrow and PET/CT would soon reveal the state of her disease and decisions would need to be made. What would our options be? Was her heart starting to slip backwards? In April her ejection fraction was 38 and her BNP got as low as 231 (0-99 is the normal range). Her ANC last week was down to 54. What would her marrow do, how would it recover? Her cells for the WT1 trial will be ready as early as July 22nd. More chemo? If there’s anything more than 1% cancer in her marrow, the modified t-cells are unlikely to succeed at stopping the progression of her disease. What then? More chemo? Well, it would need to be more hard-core than Azacitidine if Aza hasn’t kept it at bay. But what, what chemo can her weak heart handle? Even if there is a chemo that is not directly hard on her heart, a more intense chemo will suppress her blood counts longer, more severely, leaving the door wide for infection, for a sweeping torrent that could once again overwhelm her heart, this time for good, no turning back. But what option have we? If there is much disease at all, we must do something! We must take the risk. Because if we don’t, we know the outcome. We know the outcome. We find ourselves stepping closer and closer to an edge. I think of Ahmie and her mom’s agonizing prayer. I shudder. I pray. I call out to the Lord. But you see, He has not promised to save her. He has not promised some number of years in this life that we think we have a right to – there is no allotment promised. I shudder. I pray. I pray.

Do not worry about tomorrow. Trust me for tomorrow. I will provide for all your needs. Eat the manna before you. Love her today. Live your today to the fullest. Live into what I proclaim this life to be about. Because it is not about granite countertops and painting the house a color you like. It is not about traveling to that amazing country. It is not about finally losing that awful belly fat that wiggles like a jellyfish. It is not about having a job and a pay check that makes me feel good about myself and gets me what I want. It is not about my comfort. It is not about the hundred thousand things my flesh says I need and the world clammers to echo back endlessly. Romans 8. Wow. The way of the Lord is so, so contrary to how I want to live my life. His words are hard words. I want to turn from them because they are hard, hard. Oh Lord, don’t you see I’m weary? Can’t you just let up for a while? Can’t you just let me live my own life for a little while? Can’t I just hunker down here and indulge? Lift your eyes. Lift your eyes!

So I lift my eyes. I look for the manna. I seek to love today. I ask the Lord to help me walk in His Spirit today. I yield tomorrow to Him. I call my friend, my older sister in Christ. I confess my sin. I ask for the Lord’s convicting. I ask Him to transform my heart, to love like He says love is. Forgive. Don’t keep a record of wrongs. Don’t let the sun go down on my anger. Believe the best. I seek times and ways to worship, to fellowship, to not make the mistake of trying to walk this hard road alone, without the surrounding of His people. I keep my eyes and heart alert. I’ve dreamt of Jens. Both times he gives me no answers. He is just alive. Alive. Jens is alive. He smiles at me in my dreams, his big sweet closed mouthed Jensie smile. And I smile. Jens is alive. Though my flesh, it be destroyed, yet with my eyes, I shall see God. I shall see God. Oh Father, Father, hold my fainting heart. My heart, my flesh it groans for You, for Your return, for Your redemption of all these woes.

It’s a few hours later. Allistaire was still recovering in the PACU from sedation from her bone marrow and PET/CT. It was minutes before 5pm. I eventually got through to Dr. Cooper. Ugh. So wretched. Six or seven spots of cancer bright on the PET scan – too small yet to show up on CT, but there, there and some in awful places you just can’t radiate – her spine, her sternum, her left humorous, her pelvis. I couldn’t keep track of them all, the words blurring in my ears, my heart growing faint, heat up my neck, my legs weak. “Can I see the scan? I need to see the image.” Sweet Olwen, the PACU nurse, wheeled us upstairs to the Hem/Onc clinic, Allistaire still too wobbly to walk and I clutching her in my arms, cheek against the extravagant softness of her fine beautiful hair, destined to be gorgeous and curly by the looks of how it’s coming back in. Oh God. Oh God. Have mercy. An out-of-body experience. Looking on from afar. So this is how this goes. This is how kids die from cancer. This is how the story dwindles and fades and wears thin until there’s nothing left. “But I don’t know how to be done,” I quietly wail to Dr. Cooper, the tears in his eyes because he too has a five-year old child. Dr. Gardner thinks it would be crazy to give her high-dose chemo with her heart so weak, so bound to fail if an infection comes. So this is how you die of cancer. I remember asking Lysen, our nurse, long ago, over three years ago, “explain to me, I don’t understand, how exactly does cancer kill you? What actually happens?” I watch our path from afar and I fear I know where it is headed and my whole flesh just simply falls, fails, quietly crashes. She is too alive. Too alive. How? How do you stop the fight? We’re not there yet, I know. We need the bone marrow results. We need to know how much is in there before we really no what options she has. Go down in flames? Go quietly? What a brutal wretched quandary. I despise, revile it all! Oh God! Oh God!

Incline your ear to me Oh Lord, hear the faint beating of my heart, my haggard breaths, the silent heaving of my chest. Be merciful. Of Father, Father, come down low, meet me here in this dark hole. Hold my hand, bind me to you. I put my hope in your holding of tomorrow. Show me the manna in this day, direct my vision to your sustaining. Hear my cry oh Lord. Be gracious. See our broken family, each of us ravaged in this trial. Come Lord, come down to us.

Romans 8 New International Version (NIV)

Life Through the Spirit
8 Therefore, there is now no condemnation for those who are in Christ Jesus, 2 because through Christ Jesus the law of the Spirit who gives life has set you[a] free from the law of sin and death. 3 For what the law was powerless to do because it was weakened by the flesh,[b] God did by sending his own Son in the likeness of sinful flesh to be a sin offering.[c] And so he condemned sin in the flesh, 4 in order that the righteous requirement of the law might be fully met in us, who do not live according to the flesh but according to the Spirit.

5 Those who live according to the flesh have their minds set on what the flesh desires; but those who live in accordance with the Spirit have their minds set on what the Spirit desires. 6 The mind governed by the flesh is death, but the mind governed by the Spirit is life and peace. 7 The mind governed by the flesh is hostile to God; it does not submit to God’s law, nor can it do so. 8 Those who are in the realm of the flesh cannot please God.

9 You, however, are not in the realm of the flesh but are in the realm of the Spirit, if indeed the Spirit of God lives in you. And if anyone does not have the Spirit of Christ, they do not belong to Christ. 10 But if Christ is in you, then even though your body is subject to death because of sin, the Spirit gives life[d] because of righteousness. 11 And if the Spirit of him who raised Jesus from the dead is living in you, he who raised Christ from the dead will also give life to your mortal bodies because of[e] his Spirit who lives in you.

12 Therefore, brothers and sisters, we have an obligation—but it is not to the flesh, to live according to it. 13 For if you live according to the flesh, you will die; but if by the Spirit you put to death the misdeeds of the body, you will live.

14 For those who are led by the Spirit of God are the children of God. 15 The Spirit you received does not make you slaves, so that you live in fear again; rather, the Spirit you received brought about your adoption to sonship.[f] And by him we cry, “Abba,[g] Father.” 16 The Spirit himself testifies with our spirit that we are God’s children. 17 Now if we are children, then we are heirs—heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.

Present Suffering and Future Glory
18 I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. 19 For the creation waits in eager expectation for the children of God to be revealed. 20 For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope 21 that[h] the creation itself will be liberated from its bondage to decay and brought into the freedom and glory of the children of God.

22 We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. 23 Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption to sonship, the redemption of our bodies. 24 For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? 25 But if we hope for what we do not yet have, we wait for it patiently.

26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. 27 And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.

28 And we know that in all things God works for the good of those who love him, who[i] have been called according to his purpose. 29 For those God foreknew he also predestined to be conformed to the image of his Son, that he might be the firstborn among many brothers and sisters. 30 And those he predestined, he also called; those he called, he also justified; those he justified, he also glorified.

More Than Conquerors
31 What, then, shall we say in response to these things? If God is for us, who can be against us? 32 He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? 33 Who will bring any charge against those whom God has chosen? It is God who justifies. 34 Who then is the one who condemns? No one. Christ Jesus who died—more than that, who was raised to life—is at the right hand of God and is also interceding for us. 35 Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? 36 As it is written:

“For your sake we face death all day long;
we are considered as sheep to be slaughtered.”[j]
37 No, in all these things we are more than conquerors through him who loved us. 38 For I am convinced that neither death nor life, neither angels nor demons,[k] neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

May5

Roar

Posted on May 5, 2015 by Conglomeration of Joy

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Often music fills my ears, pushing back, pushing out the distraction of sounds around me, pulling my thoughts inward, attempts at gathering all the scatter into some sort of coalescing. Today the gray-green waves of the Pacific roar relentlessly. A sound of static unceasing, pleasing perhaps because of the immensity of its raw power, the deep core knowledge that this is water, this is the essence of the earth expressing itself, that monotony that is staggeringly beautiful, from which you can hardly turn away. A line of dozens of surfers bob like black buoys waiting for some moment indiscernible to me, waiting to launch into those few seconds of thrill before the white ferocity takes them down. Eight pelicans, one behind the other, skim the surface, effortlessly, lazily.

The still quiet of my home in Montana knows nothing of this clamor, just shocking liquid quiet punctuated here and there by bird song. Perhaps in storm the land sings with ocean, clouds fill the valley making their way up the canyon with surprising swiftness, the wind proceeds them, the trees bending from the power and the constant rush of air through millions upon millions of evergreen branches, aspen leaves shuddering, flashing. There is that thrill, that giddiness to witness such power, wondrous terror that nothing can stop what’s coming. And so the waves reach for the shore, again and again, a longing never satiated.

I have wondered, would I like to live near the sea? No, sea sounds too pretty, too small and timid and kind. This is ocean. This is a vastness and an infinitude to give the word some beginning of meaning. This is force unyielding. There is absolutely no letting up. Would that sound haggard me? Would its backdrop to every day and every action invigorate and calm or fatigue, cause restlessness, unsettledness?

This is our life, a pounding raw power that never lets up, is always, ever-present. Cancer, and now heart failure too, have been the backdrop to every day and every action for nearly three and a half years. The relentless static ever demanding to be heard threatens to swamp every view. We dared to plan a trip to San Diego, a chance to finally get away and take a break. Canceled plans, thwarted hopes, desires cut short – these have marked us. But there he is, Sten on the beach below the hotel room, black wetsuit and blue board receiving instruction and soon to paddle out into that fierce green fray, lit now like liquid precious stone by sunlight breaking through clouds. The contrast of breaking waves, white, so strangely satisfying.

Allistaire’s life, ever tenuous, overlays all thoughts, undergirds all visions of future. All seems well. You sleep in comfy bed, you eat tasty fish tacos and then there it is, because it has always been there but something causes you to tune into that roar, that relentless pounding of cancer like the wolf threatening to blow your house down. The barbs of cancer puncture and sorrow seeps into those lacerated places, saturating the tissues. Now there is another layer, another strata of sorrow, ever-present, silent but pounding, roaring its reality into unnoticed places. Jens is dead. We repeat it to ourselves in disbelief. I saw his body laying there on the table, clothed in plaid flannel and dirty Carhartts, a most common image. “They didn’t do his hair right,” Jo exclaims through tears, lovingly running her hand through his hair, “he never did it that way.” A sad smile because Jens really never did do his hair, that’s why it doesn’t look right. I held his hand and felt the shocking cold of his arm under the shirt. I told myself, this is Jens, he is dead, he is dead but I could not fathom it, I cannot fathom it, I don’t know how to take it in! We sit, we walk and there suddenly we are confronted with something that brings Jens rushing to our minds. We stare at the amazing stretcher from the ambulance, awed by its engineering design and there is Jens. We walk down the sidewalk and see the “corn hole game” and there is Jens. We hear Dave Matthews in the restaurant and there is Jens. Someone mispronounces Sten’s name, I correct and go through the list of the four brothers with the norwegian names and there is Jens. I send out a group text to give an update on Allistaire and there is Jens. My husband’s green jewel eyes fill again and again like pools, and there is Jens, Jens. His sweet brother is gone, gone. His name pounds through our hearts, punctuating our days endlessly.

I don’t know if I can live with this unceasing roar. I feel desperate sometimes, wild with the desire to use my wee force to make this all stop, turn around, never come this way again. We have no choice. It is unyielding, it is a reaching, a groping that will never be satisfied, not in this life. We will never again hear Jens’ voice in this life, nor see the green of His eyes, the eager excitement in his story telling, the silly contortions of his face to make us laugh, the gentle tug of pulling Jo into his protective warm chest, the wrestling with how to live out his days – his desire for satisfying work and play. Oh dear Jensie, I cannot comprehend that you are really never again going to walk through the door. Surely you are just away, or more likely, I am simply in Seattle with Allistaire and you will visit or I will see you when I get to come home again, you will walk through the door for one of our big family get togethers, arms loaded with tasty food. You will join the circle of your brothers, beer in hand and I will stand back and take in with swelling satisfaction the joy of our family together, the hope of more little kids. But I saved all the baby stuff. I saved it for YOU! For you and Jo. I wanted to see those sweet little clothes that encircled the bulgie flesh of my two little girls, on your children. I couldn’t wait to see what they’d be like. I have imagined you Jens over and over, holding that new warm bundle of life in your arms in awed amazement, in wonder at what you and Jo had made, Jo next to you looking on, equally rejoicing in a new little life and seeing you as a dad. For you Jens, were to be such a sweet, sweet dad, full of joy and play. And it is not to be and what is Jo to do with those bags of clothes, of baby gear I thrust on her?

There now, just to the side, in parallel to the bright thread is now the dark. Every remembrance is dual, joy and pain. Jens is dead. There is now no hoping, no imagining his future. There is only sadness of what might have been. Allistaire’s future remains ultimately unknown, though there is already cost, already deep gouges in her flesh that cannot be undone. On a Wednesday we sat huddled together on the couch at Sten’s parent’s house, Jo and all her family, the Wilsons, and all of Jens’ family, we the Andersons. We gathered to draw together tales of Jens, bright threads of his life intertwined with ours, sorrow and joy all tumbled together. I sat on the edge with the phone shoved up against my thigh, ever aware of its presence, that its ring might suddenly clatter into this sacred space, slicing, and telling us what is to come. Hours passed with no word from the doctors, despite knowing that surely by now her PET/CT was complete, results would be back and final results from her bone marrow biopsy should also return soon.

When our time of remembrance wrapped up, I shut myself in Lowell’s study and sat on the carpet as close to the heater as I could get, right up against the window, staring out, watching the slow consistent fall of snow. The day before had begun with sun and sixty degrees and then the evening turned windy and fat flakes began to fall. All through Wednesday the snow fell. I sat with apprehension, knowing that at any moment the next twist in this journey with Allistaire would be revealed. I sought to prepare my heart for what might come, to see the news as from the hand of Christ. For I believe in God who determines all of our days before one of them has come to be, God who holds all of our life in His hands.

But it gets messy see? I seek to follow my finite mind, a trail, a nubby fiber of reasoning and it all gets mucked up. Did God cast Jens off that mountain? Does God command the swirling rotation of electrons around the atom’s nucleus? Is He Lord over atom binding to atom to form molecule, joining countless others to form the cell? Does He declare, “here your proud waves halt?” Does he pour forth the snow from its storehouses? Does He count the number of hairs on my head? Is He alert to my every rising up and laying down? And what of another head sliced off by Isis, another body rotting away from Ebola? Where is God in these moments? Is He God? What sort of God? Is it His prerogative to decide if and when cancer finally gnaws away Allistaire’s life? Is He good?

The snow falls and I wonder. What if it’s all just a bunch of crazy talk? I’ve read the Bible, I know. There are wild tales there. Mysteries. Paradoxes. Seeming contradictions. Countless questions left unanswered. Answers that make me twist and arch in discomfort. What if there’s no point at all, simply an incredible accumulation of mutations over eons resulting in a staggering fancy arrangement of atoms? Who cares then? What is Allistaire’s life? Its loss is only sadness. And what is sadness? An illusion? Another blind accomplishment of evolution, a component of survival of the fittest to get me to fight for the life of my offspring so my species can go on? Is my love mere firing of neurons? And what of Jens? Was he just dust laying there on the table, soon to go back to join the rest of the earth to one day become a blade of grass, energy produced as the bonds of atoms burst in that furnace burning up his flesh, to go up and join the energy of clouds and wind and light? Is Jens simply a molecule in the scale of the fish I will eat? But where was Jens when that body lay on the table? For he was not there.

The snow falls and I wonder and I feel sick to my stomach. What is the point of all this, all this agony, if all she is is a bunch of atoms? Let her go, let her go. Walk away. It doesn’t matter anyway. It’s all illusion, all dream, all for what? But I cannot go there, the very fibers of my being rail against that view. I have seen beauty. I have learned of kinase inhibitors, of heart muscles beating in unison, of atoms seeking electrons to at long last be at rest. I have looked into Allistaire’s blue eyes flashing with delight. Jens was no longer there, just beautiful, beloved dust. I choose one unprovable over another. I have seen the Lord. I have heard His voice. I stand with Job, having tasted a bit of loss, and I yield to the Lord and allow Him to instruct me. The waves pound the shore. The ocean speaks of the depths of God’s love. The sky, as far as the east is from the west, speaks of His forgiveness. Mountains fall into the sea at His voice, declaring His power. The stars in all their vast infinitude, well, He calls them out one by one. I smile. My heart yields and I stand in awe and I know that when the day comes that I see Jens again, I will have first fallen on my face in adoration, in delighted submission to the God of the Universe who orders my days.

I walked down the hall into the kitchen where folks were about to head out to another family gathering in this week of sorrows, of mourning. In that moment I was struck with the shocking suddenness and swiftness of Jens’ death, those sixty startling seconds. I was struck by the contrast of that quick death with the nearly three and half years that Allistaire’s life has hung as by a mere thread, numerous times dangling over seeming insatiable jaws of death. There is no leukemia in her marrow, I tell them. No detectable cancer in her marrow and all of the six previous spots of solid leukemia as seen on PET/CT – gone. There is only one small new spot of likely cancer. A 1 cm brightness on the scan shows up on the outside of her left leg in the soft tissue. The doctors are shocked. With her ANC plummeting to zero, they assumed they would find a marrow packed with cancer. But no. Again her life is sustained against all probability.

After I return to Seattle, a biopsy confirms the spot in Allistaire’s leg is cancer. Last Thursday, with giddy excitement, Allistaire was transported by a critical care ambulance to the University of Washington for a radiation simulation and consult with Dr. Ralph Ermoian. Her leg may be deformed in terms of its long-term growth. It may end up being shorter than the other but radiation should be effective at eradicating the cancer in this location. Of course any part of the body exposed to radiation is also more likely to become cancerous down the line. The barbs snag against our flesh, but we are well acquainted with such stings and give the warnings no attention. Allistaire is set up in the CT machine to line up her leg and create a foam form around her leg and foot to keep it precisely in place during radiation. Lines are drawn along her shin and upper thigh to align the lasers and two tiny jail-house style tattoos are etched into her knee, needle dipped in ink and scraped into tiny dots. She screams and trembles in fear. How many times have I had to tell her, “I know it hurts, I know it tastes yucky, I know it is scary, but we must do it, we must, or child, you will die.”

Radiation will begin on Wednesday when Sten and I return. The hope is that Allistaire can make it through all of the ten days with no sedation. She will be alone and must stay totally still for approximately five minutes “in the vault” each day, with several 30 seconds blasts of radiation. It will be wonderful if she can do this without sedation. While the three episodes of cardiac anesthesia (for her bone marrow biopsy, PET/CT and biopsy of leg) went great, sedation does pose its problems for the heart, specifically in reading the signs of how well the heart is functioning. Each sedation brought lower blood pressures and an increased BNP. Sedation requires no eating for long periods of time, impacts energy and can increase nausea. The cardiologists feel that Allistaire is very ready to wean off of her Milrinone and have been eager to give it a try. But sedation would confuse all the indicators of how well her heart and body would tolerate the wean. They decided to turn down her Milrinone from .3 to .2 on Saturday and will keep it at this dose until after radiation on Wednesday. If she does well without needing sedation to stay still during radiation and the wean of Milrinone appears to be going well, they will then turn her down to .1. Today’s echo showed an ejection fraction of 31, down from the last one of 34 which was done from the prior at 38. Each three of these echos the cardiologists say look essentially same, but boy what I wouldn’t give for better numbers. Exciting times and nerve-wracking times. Times of ever waiting.

If you walk in the Allistaire’s room, you will encounter a sweet-eyed five-year old girl bursting with joy and life and an insistent plea that you play with her. What you see is the vibrant life of a girl we are so passionate to save, but there are happenings below the surface that constantly reveal another story. She tested positive for C-Diff (Clostridium difficult), a bacteria in the gut, which has meant she’s been not only in ordinary contact isolation, but now contact enteric which means she hasn’t been able to leave her from for the last two weeks. Her course of antibiotics wrapped up yesterday and if she remains symptom free, she will likely be allowed to roam the halls in a few days. We hope she can fully get over this as sometimes C-Diff can be pesky and keep coming back. Her other challenge is that her marrow has been incredibly slow to recover. It finally did recover from her heavy-duty round of chemo that began in January but with this most recent round of chemo about six weeks ago, her ANC plummeted from nearly 1,700 down to 8. The chemo she received, Azacitadine, is not supposed to be very count (marrow) suppressive but clearly her marrow has just been beaten down so relentlessly. The major problems with this is that it means her blood counts aren’t recovering well enough on their own, resulting in continued red blood and platelet transfusions which tend to be hard on the heart (they are a big fluid increase and the fluid is heavy/dense). Also, with such low white blood counts, she is far more vulnerable to infection of all kinds and it takes far longer to get over infections. On top of it all, Allistaire still has cancer that needs to be warred against. It has been six weeks since her last round of chemo began which means she’s two weeks past when she would normally begin another round of chemo. The door to cancer cells has been left wide open. She needs chemo. She needs her marrow to recover. It is all such a delicate balance and requires decisions to be made with no guarantee of outcome, just hope, hope.

The most recent bomb dropped on us unintentionally came when Dr. Ermoian talked to us about radiation. He referenced the conversation he had with Dr. Gardner about the pros and cons of this focal radiation. He mentioned that she said Allistaire would not be able to get TBI (Total Body Irradiation). My mouth dropped. My heart dropped. Heat clamped down on the back of my neck. Allistaire was not able to get TBI in her last transplant. It is a core part of her hope to finally be cured of AML. It can have long term serious consequences for the heart. Oh God. Here we are again – your most powerful weapons to kill the cancer are the very weapons that will in turn take your child’s life. There are no letters to sound-out the agonizing wrathful rage and sorrow I feel at this plight. I want my child to LIVE!!!!! Then Dr. Ermoian says that it is not even clear how effective TBI is in the long run. Dr. Gardner’s words from months ago come flooding my mind, “We like TBI so much we give it to babies.” Her point was that they so believe in the worth of TBI that they even give it to infants – to infants!!!! Do you know what TBI is? I will quote again what the Fred Hutch website says, “it is like being near the epicenter of a nuclear blast.” Your baby, my little girl, intentionally placed near the epicenter of a nuclear blast?! Would you ever do that? You would, you would if it was your only hope that your child might live. But what wretched, agonizing choices, not really choices at all. You may be weary of me asking you to give money to cancer research. But I’m going to ask you again, if you haven’t already, would you consider giving to Obiliteride? Obiliteride is a fundraiser where 100% of donations go directly to cancer research at Fred Hutchinson Cancer Research. Donate HERE.

I have been so thankful for Jo’s heart in the face of losing Jens. My heart and faith have been encouraged as she has sought the Lord, His directing, His holding her up, His provision. She has determined to be on the look out for what He will do, what He is up to. Her fight has only just begun. These days I have felt so weary, circling endlessly in this eddy, little to no seeming progress forward, no end in sight. Mine has been a choosing to lift my eyes to Christ for three and half years. Jo’s soaring spirit admonishes mine to look back over the bounty of God’s provision, of His faithfulness, of His words etched into my heart over these years. And really, Jo’s fight to have eyes to see the Lord did not begin on April 11th with Jens’ body hurled over cliffs, nor did mine begin with Allistaire’s diagnosis. No, long before these days, in long years past, a seed was planted and the root has gone down. Our thirst for our Father, a scanning the horizon of our days for His face, came long before. Do not wait for tragedy to seek His face. Determine to seek Him now. Thirst. Hunger. Yearn. I believe lie when I live in wait for my circumstances to line up with my desires for how my life should look, waiting to truly live, to know rest and satisfaction. The Lord IS my life! The Lord IS my dwelling place, my home. My Father is my sabbath rest now, now!

With Jo’s permission, I have copied below her words from Jens’ memorial service and a link to the video of the service HERE

“Jens.  A single. Mighty. Syllable. Four letters that align so solidly beside one another, providing a foundation on which to build a life, develop character, cultivate relationship, grow ever more in integrity.

Jens.  A name woven deep into the tapestry of my soul, your fibers reinforcing my own at their weakest places and adding depth and beauty to my places of strength.

Jens. Jens. Jens.  I hear your name with each beat of your heart and with it I am transported, whisked away to cold, foggy early mornings in the Lamar Valley of Yellowstone, peering with anticipation through darkness as we wait for the first signs of dawn to show itself. Another heartbeat and I sit in the passenger seat of the 4-Runner as we bounce along dirt roads of Montana, nowhere to be but right where we are. My heart beats again and I find us snuggled in the tent perched high in the mountains, your face lit up as clear as day with each bolt of lightning that cracks above us, your eyes gleaming, awed by the display of power and beauty of our God. Another thump of my heart and I look over my shoulder to see you flex your strength against the waters, navigating the raft down the river or the canoe through the lake, you tirelessly paddle and steer as you smile back at me. My heart beats and we wake up and our eyes meet – we both smirk and shake our heads in wonder of the ball of black and white fur that so masterfully weaseled his way between us in the night – Peyto Dog was ever faithful in keeping tabs on his pack, even as he slumbered. Another beat and you’re making popcorn, pouring copious amounts of butter over the top. The next beat sends me to the garage where I serve as your third and fourth hands as you skillfully craft another beautiful wooden piece with those rough, weathered, hard-working Yensie hands. Another beat and we’re gathered around the table at your parent’s house, everyone talks and eats and talks some more. I find you on the couch or in the hammock reading, another Ivan Doig book down, another rich classic finished. I find myself on skis, skinning up a glistening, iridescent blanket of snow off the Teton Pass, following you and Peyto Dog up, up, up… and surfing the deeps back down again. I see you crawling around endlessly on your hands and knees, a thick furry blanket over your back as you delight Allistaire with your bear grunts and tickles. I walk around beside you around the park at night in the cold, your big red hat covering your head, every now and then a wisp of smoke rises as you puff your pipe. I find you lying on your back, head in a cupboard, fixing a leaking pipe, repairing the garbage disposal, troubleshooting the dishwasher that’s on the fritz. You come to bed late the night before a backcountry venture, waxing skis, ensuring you’ve packed appropriately, pouring over weather forecasts, condition reports, and the next day’s terrain on google earth just one more time before you rest. Another heartbeat and you‘re in your fleece trout pajamas being the goofy guy I so love, making up silly dance moves and striking poses, all to see my face light up and hear laughter pour out. Another beat and we’re sitting around the fire, watching for hours as the embers dance their way to the inky, star-studded sky. I blink and the night sky is still there, but the dancing embers have been replaced by the mesmerizing green + gold + white dance of the Northern Lights in Norway…

These heartbeats and moments in time continue on and on and on, filling me with memory of you. Other heartbeats are shocking, excruciatingly painful, visions of what could have been, working through the complexities and beauties of this life as we would have grown older together… these beats are unavoidable and meaningful, our unfulfilled dreams that will hang in the balance.

I press my ear to your chest, hoping to hear and feel our heartbeats align. Yours is a mighty, sure rhythm, the metronome stomping out a rhythm for your life. Oh how I marveled at it… this steady beat was at the center of all other creative rhythms you so incredibly pounded out – whether on pots and pans as a young boy, the steering wheel on road trips, the drum set in the northeast corner of the house, or as you poured out yourself on Sundays. Days you played at church I would intentionally show up after the music had already begun as I so loved pulling into that parking lot and stepping out of the car and hearing the only audible noise from inside filling air: Yens stomping out a rhythm on the bass drum, an extension of your wildly loving heart, pumping life through your body, through our family, through this community and beyond as you gave yourself with abandon to worship the Giver of all Life.

My heart has been privy to gentle whispers over the last decade of life… the first, before I knew you well, was God’s soft nudge and raising of my eyes to see you as he said, “That’s HIM”, something I never told you until 4 years later and we were husband and wife. My heart also endured a recurring dream over the last couple of years… I was always spared details about what took your life, but found myself widowed due to a ski accident, a burden that always fell to Peder to relay to me. I had this dream, this preview of life to be lived out without you by my side, and though it pained me so, it brought no anxiety. We would talk about it and you always refocused my vision, for you firmly believed that your task was to live fully vested in each day, deeply committed to taking responsibility for your actions to best preserve your life + the lives of others. The rest was up to the Giver of Life, who numbered your days before he fashioned your large cranium, wavy blonde locks, green eyes, and heart of gold in your momma’s womb… when this day came, it would matter not what you were doing, you would be ushered swiftly from this earthly realm to the feet of our Christ, our King. When the avalanche report came out detailing your accident and producing the exceptionally rare statement that there is, essentially, not a single explanation for what occurred on April 11th, my heart somehow found rest in that this was the day I had been prepared for over the last couple of years.

Your above and beyond efforts to be safe in the backcountry – from obtaining your Wilderness First Responder and Avy 1 certifications and rereading through your course materials a couple times every season to the so-called “over packing” of extra first aid and survival items – has preserved the lives of your brothers and friends over the years, and for that I am exceedingly grateful.

As my heart beats on, flashing through fifty-some treasured memories and painful dreams a minute, I have yet to hear it muster “Why God?? Why now? Why my Yens??” …Instead, all I hear is the persistent inquiry, with a tone of expectation, “What are you up to, my King?” For God, you still sit enthroned in my heart and in the heavens and beckon me to love you more deeply… and you even sweetened the deal, at Yens’ request, I’m sure, by gifting me with seasonal favorites of mine, heaps of spring snow followed by blue skies and radiant spring sun, both of which bring such promise of renewed LIFE. I’m on to you, Lord, I see you moving and shaking, and extending such Love, that same wild love that brought such vigor to the heart of my grizzly bear.

So… I implore you who listen in today, on behalf of my best friend, my love, my sweet honey: slow your selves long enough to picture the four chambered organ just beneath your sternum, a perfect + harmonious balance of electricity, chemistry, pressure, and tone, a gift with at, without any conscious effort on your behalf, send the gift of life throughout your body to sustain you. WONDER. MARVEL.

Jens’ big, giving, powerful heart beckons me and you to march onward in his wake, embracing the grace and freedom he wrapped his life around, to continue to stomp out that rhythm that we’ll hear the most loudly when the thunder clouds roll in and Yens takes to his drum set in the sky and makes a mighty ruckus with THE KING.

You are dearly loved, deeply revered, immensely missed by a greater group of people than you would have ever fathomed… I cannot wait to look you in the eyes again, see you smile, and fall on my face beside you in worship at the Throne of Grace.” (Written by Jonell Anderson for her husband, Jens’, memorial on 4/18/15)

Apr13

Memorial Service for Jens Anderson and Opportunities to Help

Posted on April 13, 2015 by Conglomeration of Joy

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Thank you for your outpouring of love, compassion, and desire to help Jens’ family and friends in this time of grieving. In an attempt to simplify communication, I will put everything on this one page and update it frequently. (Last updated 4/17 @ 10:00am) Please feel free to share this post.

Memorial Service for Jens Anderson

Saturday, April 18th at 3pm

Journey Church (1794 E Baxter Ln, Bozeman, MT 59718)

All are welcome. Please bring your kids! A reception at the church will follow. Below are several ways we can use help for the Memorial and Reception:

Watch the memorial service through a live broadcast. Below is the Livestream link to the event page for the live broadcast of the “Celebration of the Life of Jens Hagen Anderson.” Viewers must create a free Livestream account to view the broadcast. When you click the link, you will be prompted to login or create a Livestream account. Once logged in, the event page is viewable and a picture of Jens is in the upper left corner. LIVESTREAM BROADCAST for JENS
Folks are invited to bring hot or cold potluck food for the reception immediately following the service. Please label your dishes and you are responsible to retrieve them afterward. No need to bring drinks, these will be provided. A meal coordinator will meet you at the door and take care of your food. (Thank you for answering the call for pies and ice cream – we are now more than sufficiently covered!!!)
Mason jars with pussy willows and/or tulips would also be appreciated to decorate tables.
If you would like to contribute your favorite (high resolution) photos of Jens for the purpose of being in the slide show, please upload to this Google Drive Folder by Thursday, 4/16 @ noon. A selection of submitted photos will be included in the slide show.

There are several ways Jo would like to open the invitation to honor Jens:

Jens loved the beauty of the outdoors and we’d love to plant some aspen trees in his honor. If you’d like to purchase an aspen tree celebrating Jen’s life, please bring it to the church no later than noon on Saturday, April 18th.

Jo has also asked that if you would like to make a donation in Jens’ honor, please consider donating to Obliteride or The Bozeman 3.

This summer will be Jo’s third year participating in Obliteride, which is a fundraiser for cancer research at Fred Hutchinson Cancer Research Center in Seattle – an institution that has had in integral part in her niece’s, Allistaire’s, treatment for leukemia. To donate to Jo in Obliteride this year click HERE.

The Bozeman 3 is a local non-profit here in Gallatin County, Montana which provides financial support to families whose child has been diagnosed with cancer and are forced to seek medical treatment out-of-state. To donate to The Bozeman 3 click HERE.

Lastly, as many of you know, Jens loved to take landscape photos. A number of his wonderful works will be printed and displayed at the service and available for purchase with the intention of Jo being able to take this money and create a book of his beautiful photographs. A few examples are included at the end of this post. If you are from out of town and are interested in purchasing a print please email Jo’s mom, Deb Wilson at “debraewilson@gmail.com”

Check back soon for additional ways to help including a meal sign-up.

If you would like to send a card to Jo, her parent’s Deb & Bob and/or Jens’ parents, JoMarie & Lowell Anderson, their address are below:

To send mail to Jo and/or Deb & Bob Wilson: Jonell Anderson care of Journey Church, 1794 E Baxter Ln, Bozeman, MT 59718

JoMarie & Lowell Anderson: 14260 Kelly Canyon Rd, Bozeman, MT 59715

Apr13

Tragedy

Posted on April 13, 2015 by Conglomeration of Joy

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Jens died. Two words that I cannot comprehend fitting together.

My sweet brother-in-law, Jens, Sten’s youngest brother, died on Saturday skiing with their older brother, Peder, and two friends. A relatively small avalanche swept him over a cliff and was dead when Peder found him a minute later. Here are the reports: Bozeman Daily Chronicle Montana Avalanche Report

Here is a recent video account of the accident by Gallatin National Forest Avalanche Center

I flew back to Bozeman yesterday and will be here for the week. The memorial service for Jens will be this Saturday, April 18th at 3pm at Journey Church. I hope to get more details out soon for those that live in the area and want to help.

Below is a post I started a week ago. I will leave it for you as is. It is about needing to grieve, about needing to be given permission to let loss be loss, weighty, aching loss. Whether in sudden death or long tortuous demise, the loss is real and we must give room and allow the dark to be felt, the ravaging pain to sear. There is hope, there is beauty but please, don’t cut short deep cavernous grief. It is in truth, a strange accounting, a survey of all that was good, that was treasured and dear. To cut that off, to force its dilution is in fact requiring one to forgo assessing the bounty. Let the sorrow come, the tears flow and flow, the gut ache, let every joy past be remembered and every future, earthly joy lost, be mourned.

My fingers shake this morning as I call the hospital from my kitchen counter in Bozeman. Once again I fear the numbers. With an adjustment of meds, Allistaire’s heart has actually once again improved after a drop two weeks ago. Two Mondays ago, her Ejection Fraction dropped to 23 (previously 35) and so she was put back on .3 of Milrinone, the Isosorbidedinitrate-Hydralazine was dropped and a very low dose of Carvedilol was added. The idea is to keep her at .3 for a while and maximize her oral cardiac meds. Her Ejection Fraction last Monday was 34. She is set to get another echo this morning and today her BNP is 369, a beautifully low number. So I am hopeful that her heart may continue to slowly improve.

What has my hands trembling are her dropping blood counts. We are mere days from the end of this 28-day cycle of chemo and yet Allistaire’s ANC today is 18. It has continuously dropped over the month, and this in the face of a chemo that is not supposed to significantly suppress blood counts. The other concern is her rising Uric Acid and Phosphorous numbers which can be a sign of tumor lysis, specifically leukemia. A flow cytometry test was done on her peripheral blood last week looking for leukemia. Thankfully the test came back zero percent leukemia. So the question is, are these dropping blood counts from a severely weekend marrow that collapses at the slightest insult and the electrolyte numbers askew from the result of other meds? Or are these all evidences of a marrow packed with leukemia cells, not allowing healthy cells to grow. We will soon know. On Tuesday she is scheduled to get her first bone marrow test since December. The cardiologist feels that the improvement in her heart function makes the risk of anesthesia reasonable. The procedure will be done in the OR with the aid of the cardiac anesthesia team because the risk is still greater than it normally would be. Depending on the timing, we should hear results as early as Wednesday evening. If Allistaire handles the anesthesia well, a PET/CT will also be scheduled.

I already had a plane ticket to fly out here for this coming Wednesday night, not having the bone marrow test yet on the radar. Once it was scheduled, I realized that this could be a wonderful week with good news, or a devastating one. If Allistaire’s marrow has a significant amount of cancer, at most we might have one last round of chemo to try. Or we may have nothing left. Despite all of this, she herself is full of joy and life and delight with long luxurious lashes and the softest light brown fuzzy hair. We have been up on the cancer unit for a week, enjoying a fantastic view and the joy of familiar loving faces. She has not been in pain and is eating okay, throwing up just every now and then. My wonderful parents will be with her for the week. I am blessed to have their amazing help.

And then without warning, without the slightest hint of foreshadowing, a sickle came hard and fast and swept away the life of Jensy. Who can understand these woes? Lord we call out to you even as we know it is You who determines our every single day, from first to last. I find myself once again standing with Peter. Many of Christ’s disciples and followers walked away because of His, “hard teaching.” Jesus asks Peter if he too will leave. Peter responds, “Lord, to whom shall we go?” The ways of the Lord are past understanding, sometimes all seems just brutal. But to whom shall we go? To what truths will we cling? Some are not necessarily content, but more content to live with the unanswerable, because much is unanswerable. Yet, as for me, I stand with Peter who went on to say, “You have the words of eternal life. We have come to believe and to know that you are the Holy One of God.” For Christ’s words are spoken to us all. It is true, there is an element of leaping to faith, to my faith. There is a choosing to trust in an unseen, an unprovable. But my faith is not blind, it is a faith with eyes wide and roving, seeking, alert and my eyes have seen the Lord and so I walk trembling, but fixed on Christ.

Hebrews 11:1-3 & 13-16

“Now faith is confidence in what we hope for and assurance about what we do not see. This is what the ancients were commended for. By faith we understand that the universe was formed at God’s command, so that what is seen was not made out of what was visible…All these people were still living by faith when they died. They did not receive the things promised; they only saw them and welcomed them from a distance, admitting that they were foreigners and strangers on earth. People who say such things show that they are looking for a country of their own. If they had been thinking of the country they had left, they would have had opportunity to return. Instead, they were longing for a better country—a heavenly one. Therefore God is not ashamed to be called their God, for he has prepared a city for them.”

I rejoice that Jens is with the Lord in that heavenly country, and one day we will be reunited with him and see our Lord with unveiled face.

Post started last week:

I eye the stairs with envy, with desire. They are swept, brushed clear of the tens of thousands of millions of pink petals, fallen like decadent snow from the cherry trees that frame the stairwell. Time and rain and thousands of feet turned them into brown decay, so quickly replacing their fleeting soft tender beauty. To stand in the cold spring air and sweep, step after step, cherishing and loving the temporal beauty, not condemning it for failing to live on, nor accepting its smeared muck as beauty any longer, pure pleasure, contented joy. Joy for the fleeting beauty and acceptance of its passing.

Allistaire’s body moves slowly across the bath tub floor, delighting in the strange sensation of buoyancy, so long missed in the PICU with nothing but wee plastic baby tubs in which to bathe. Tears prick my eyes and ever the simultaneous push and pull to give in to them and hold them back. Sometimes I yearn to just be allowed to cry and cry and cry. Cry without end. Weep and cry out with face distorted by sorrow without caring who cares or who sees. It comes to me that I would choose Allistaire again, even if I knew it meant this, all of this. I would choose her again if such a thing were mine to choose. I take in her small body with the quarter-inch of light brown fuzz, blonde along the hairline, her lashes long and dark, the scars and the white tubes protruding from her chest draped above the water and wrapped in Press ‘N’ Seal meant for left overs in the fridge, not life lines. I wish to be left to cry without having to restrain, without feeling the responsibility to balance with gratitude, without having to consider another’s assessment of me, of my grief. I don’t want to have to explain, to tell you the countless tales that have formed this mountain, this deep pit of grief. I don’t want to need to substantiate my rightful place to feel my flesh ripped off.

But there it is, you see she is still alive and I know I have much to be thankful for but it feels like unless I stand before a grave, I am compelled to look for the light, the life, the joy, as though I have no right to see the darkness, to call it black. And I do look for light and life and joy and I want to, but sometimes I just want to be let alone and wail in the night and weep as I fold laundry in the hospital laundry room where you have to fear your clothes stolen if you don’t get there right when your load is done and your must use the provided little capsules of detergent. You are not at liberty to use your own detergent. I want to pound the bed at Ron Don that feels like sleeping on a precipice on the far edge and rolling down a hill into the center. My very sleep blares how everything feels wrong. Everything seems askew and out-of-place and I weary of it. I weary.

Sunday was a strangely hard day despite my attempts to make it fun for Allistaire complete with a cute dress, easter eggs filled with candy and eggs hidden around the Unit for a wee hunt. Oh she was happy with it and only longed for more eggs to find and the nurses rejoiced to see a child out of bed, walking around in clothes from another world, taking delight in an act millions of children have done throughout childhood. But somehow I could not muster the joy I so wanted to have. All I could feel was loss, was sorrow, was agitation. I found myself being short with Allistaire, short with Sten. I had leveled an emphatic “NO” to his idea to look into VRBO (Vacation Rental By Owner) as an option for our lodging for our upcoming trip at the end of the month. Without realizing it, I hastily rejected an idea that screamed insecure to me, far preferring the normalcy and seeming trustworthiness of a reservation at a hotel where I could read through nearly a thousand reviews if I chose.

It took time and apologies and challenging slogging conversation to realize that a culmination of individual saddnesses were all piling one on top of another, threatening like an avalanche to sweep me off my feet. I had the distinct feeling of rage at Allistaire’s leads that insist on alarming on the monitor at her every movement. I severely lacked patience when it came to another meal time, another two plus hour stint in which I ceaselessly admonished her to take a sip of her juice and put a bite in her mouth. When I finally pulled back, I saw my heart swapped with sadness to be in the hospital for yet another holiday, another Easter where eggs lay at nurses stations and nestled in curves of brightly colored tape to label IV pumps rather than with family around a meal and out in the grass searching for those eggs. My heart already sagged with the knowledge that in a mere day, Sten would be gone again, not to return again for another month. Separated again. Alone in the fray again. Eighty days in the PICU, nearly ninety in the hospital, with no end in sight, no guarantee of outcome.

Out of the corner of my eye, as we turned to the right from her room rather than our usual left, I saw the room down the hall flooded with lights, countless bodies in teal scrubs and masks. We were instructed to cut short our normal loop, forgoing the last segment, first because they were putting in a line, then more activity, then a code. Even at five in the morning when I left to exercise, the room was a blaze with light. And then, later in the day, between walks, the room had simply gone dormant. I recalled that the curtains had finally been drawn and then it was just empty. Empty. No more the lone figure on the outskirts with the orange Caregiver badge. Empty. I asked the nurse who I knew could not answer my question, was not allowed to tell me the truth, I asked her if that child died. She looked at me slow and asked, “Are they still there?” No. No. The room is empty. And I am just to keep walking, walking my child around this endless loop while rooms fill and empty, fill and empty and we, we languish ever walking loops. And we are to rejoice, because we walk, we walk.

The caustic fear has diluted after countless storms and rain that washes and washes, the fear ever present but saturated in endless details and hours and days and nights. As I walked into the hospital that Sunday evening, light staying longer, bright fierce green of new leaf a delicate airy shawl around trunks and branches, I thought, “the worst that can happen is that she dies.” A thought so stark and naked and unadorned and assaulting and simple and brutal and calming. A call on my phone from the nurse that Dr. Rosenberg, the attending oncologist, is looking for me, wants to talk to me. Yes, I’ll be right up, I’m on my way in, I respond. And suddenly it occurs to me that it can’t be good if she is calling, if she wants to see me. We head to the quiet room where things anything but quiet are discussed. She tells me Allistaire’s Uric Acid and Phosphorus are on the rise. This is evidence of possible tumor lysis, of cancer cells breaking open and spilling their contents into the blood. This is the unique mark of leukemia cells to be specific. She has ordered a Flow Cytometry test done on Allistaire’s peripheral blood to look for cancer cells. It won’t be definitive, not nearly as telling as bone marrow test would be, but all we can do at this point.

We talk of death. We talk of hospice, a word so forbidden, so taboo, you fear even uttering it as though doing so will bring it into a living reality, a throbbing, visceral death. I cry out that I do not know how to let her die. But strange peace has seeped in, silent, filling the crevices, comforting and rocking my heart, telling me that I do not need to know, for no one does. No one who faces this loss of child knows how to face it. Peace tells me that my feet must simply walk and hands move, heart beats and I eyes open and close. My body must live out whatever days and hours may come. My heart will follow along, pulled by the body, inseparable but living out its own actions, its own bleeding, its own screaming and silence and smiles seemingly misplaced but never truer. And I knew too, the Lord will lead my heart. He will hold it tender even as it bruises and threatens to lose all its life blood. Peace seeped in, like light imperceptible which ever so slowly turns darkness to day. The slightest, barest hint of light, the sort of light you look at straight on and cannot see, light not seen by eyes, but by that essence of ourselves, that part of ourselves that knows without our knowing how. She told me that parents who talk to their dying child about the reality of their dying rarely regret doing so. And as her words filled the air from her numerous experiences with patients dying, I saw my one child’s face, the one with whom I have had far more occasions to talk of death with and of the life to come, the hope for a new body that can never again die – more occasions than most children will ever have with their parents forced to face the fleeting beauty of our lives.

It was actually Monday evening that I talked with Dr. Rosenberg. For on Sunday evening I was panicked with fear, no, with terror. Terror. With Allistaire’s rising BNP, and the next day’s impending echocardiogram, my flesh was on high alert, ringing fear of realities the next day would hold. I have bit by bit come to see in prayer that I need not shield myself from God. I need not cloak my nakedness, my ugly, unlovely flaws, my tender, vulnerable, finite flesh, so desperately weak. I am learning to not simply say that I need Him but to confess the details of my fears, my fatigue, my sorrow, my anger, my confusion, my desperate hopes. I confess not as though sin, but of speaking out truth, of yielding the details into His care. As the clock declared it morning on yet another Monday, I left the hospital in darkness to go exercise, robins sang, calling out one to another over and over, knowing somehow that the earth was still revolving, turning inexplicably ever again toward light despite none being visible. Like the robins, whose calls declare such expectant hope like no other sound I know, I found tender, thriving sprouts of peace rising up, invisible but present, pressing their form into my heart without force and yet causing my heart to yield, to give way. It was not hope that all would turn out well with Allistaire, but rather peace, peace in the face of whatever outcome.

When Dr. Hong finally arrived to convey the results of the echo, heat threaded up my back and neck and a lump formed in my throat as she told me her heart was worse, her ejection fraction down to 23 (from 35 two weeks before). As I suspected, that forward steady march toward healing was not to be. Her labs had been trending in the wrong direction despite her continuing to look great clinically. She still had energy and appetite and her profusion seemed ample. She said that she would not adjust Allistaire’s Milrinone yet but keep it at .1 until she could discuss things with the rest of the Heart Failure team. I went to Magnuson Park to sit in the sun surrounded by fresh air and light and blue water