Tag Archives: GVHD

May31

Magical

Posted on May 31, 2014 by Conglomeration of Joy

We pale Montanans approach the line for the ride, tentative in the foreign heat of Florida in May and unsure what this little blue pass will provide. The sign says there is a 60 minute wait. My fingers grope in the zippered pocket of my purse for that thin piece of plastic with the picture of a genie on it. I hold up the pass before the greeter at the front of the line and ask with stuttered speech, where should we go, what do we do with this pass? “Oh, right this way, ” he says and before we know it we are ushered into a line that puts us right on the ride within only a few minutes. To see the now famous princesses of the Disney movie, “Frozen,” Anna and Elsa, the wait was 180 minutes. Upon presenting the blue pass, the one with the grinning genie, we were led alone to a hallway, crafted in all the impressive skill of Disney to look like a castle, the glory of air conditioning soothing our over-heated skin. Again the magic worked and within only a handful of minutes, Allistaire and Solveig were twirling in their dresses along with Elsa and Anna, conversing about how they were both sets of sisters with two different hair colors. The pictures were taken and on we went to the next princess. It only now occurs to me that the genies grant wishes.

It did not take long for us to get the hang of using the genie pass, but every single time, as I held it up before the greeter, I felt that quavering sense that we were getting something we didn’t deserve. I felt the looks of scores of people who had been waiting long in the tiring sun, boring into my back. I could hear their questions in my mind…”Hey wait a second, why do they get to go ahead of everybody else? Can’t you see how long we’ve been waiting? Who are you to get in front of all of us? How do we get that pass?” A look passed between Sten and I. No words were necessary to know we were feeling the very same thing. That’s right, who are we to be so blessed, to be so favored, to receive so much? I hoped some might catch a glimpse of that little white button pinned to my purse strap, with the blue words, “Make A Wish.” Perhaps that glossy red scar on her chest or the too short hair might give clue. Eventually we relaxed more into the role of receivers of grace, of bounty, of undeserved favor and kindness. With open hands we accepted privilege and gift, all with the striking awareness of the paired contrast of undeserved favor and undeserved sorrow. For so long we have sat in small rooms waiting, waiting for that next stab of metal into flesh, for test results, for medicine, for blood, for endless conversations with doctors. For years now our lives have been lived with horrors few see, with sorrow so deep and pervasive, we weep when brushed against. Rarely has the question been uttered out loud, but it is there never the less. Why has this happened to us? Who are we to have our lives so plundered and ravaged? We have been the ones looking on with envy for the beauty and bounty of a simple life lived without the relentless, snarling teeth of cancer.

In short, we were astounded by the outlandish provision of this epic family vacation. When we were getting our luggage into the rental car at the airport in Orlando, a woman in the car next to us asked how much we paid for our car seat rental, so aghast was she at the $130 she had just been charged. I shrugged my shoulders and said I didn’t know, it had simply been given to us. Handing the cashier at Disney World my Visa card for the ridiculously expensive lunch, though the prices were shocking, I knew they were covered by that check given to us by Make A Wish. Money for meals everyday and payment for checking our bags on the airline were provided. On Friday when we at last allowed the girls to go into one of the innumerable Disney gift shops to select a shirt and a toy, I knew that too had already been covered.

Have you ever been to Disney Land or Disney World? One of my favorite things is that everywhere you look, the details have been attended to with exceptional care and thought. There is beauty and magic at every turn. Nothing is ordinary. Everything is over the top and splendid. So it was with our Make A Wish trip. Every last detail had been attended to and not just with some base provision but with over the top care and abundance. At Give Kids The World Village, where we stayed for the week, there was a carousel you could ride on any time of day along with ice cream in unlimited quantities from 7am to 9:30pm. There was a train, put-put golf, horse rides, visits by Mickey Mouse and Mary Poppins and pizza delivery to our “villa.” An amazing pool with a gradual slope inward, allowed even those wheelchair bound to enter the pool in specially designed plastic wheelchairs. Every morning a gift appeared in our villa for the girls and Allistaire has a golden star that was placed on the high ceiling of the turret of the star tower by the star fairy. One hundred and seventy thousand times a star has been placed on the ceiling of the Castle of Wishes, each with the name of a child who has stayed at Give Kids The World. Every detail was considered and planned for with giddy abundance. For this magical week, we simply received and received, hands and hearts full to overflowing.

Despite the exhaustion of long days walking and late nights, finally getting to bed most nights not long before midnight, the girls sprung out of bed, spazzing out with joy and delight. Left up to her, Allistaire would have worn her blue peacock-butterfly-fairy dress every day. The generous folks at Rocky Mountain Toy Company in Bozeman donated these matching dresses to the girls as part of a fund-raising endeavor for Make A Wish by Main Street Fitness also in Bozeman, and just downstairs from Sten’s office. The girls received many a compliment with their matching flashes of blue jewel and toothy smiles. Turns out both the girls also received the very important genetics from Sten and I that relishes roller coasters. Though Allistaire was too short for some of the more spectacular rides Solveig begged to go on repeatedly like Space Mountain, Rickshaw Rapids and Harry Potter, she never the less became a connoisseur of Thunder Mountain Railroad and Splash Mountain. I could go on and on about the delights of our trip but suffice it to say it was amazing. Sten and I most relished being together as a family and seeing the girls so giddy together.

Our other joy was a four-day lay-over through Atlanta to see our Georgia side of the family and most especially my 90 year-old Poppa who we had planned to see last year over Memorial Day Weekend. As with so many things, those plans didn’t work out a year ago. And yet, here we were a year later sitting out in the grass in a circle of chairs under the shade of a massive pecan tree. Both my parents are from Georgia, my mom from Atlanta and my dad from La Grange. Even though I have had far too few opportunities in my life as a dweller of the West Coast to spend time in Georgia, its pale asphalt roads, rolling hills of green and trees, liquid pink sunsets and thunderstorms are dear to me. This was my first visit back since my grandmother, who I cherished, died 6 years ago. As I walked out the door, I knew it could be the last time I see my Poppa alive. Sometimes this stretch of life, with all its gorgeous riches punctuated by pain and sorrow is just too much for me. Sometimes I fear if I started crying I would never stop, so beautiful are its gifts and so painful its losses. Jerry Sittser, in his excellent book, A Grace Disguised, talks of how sorrow expands the soul enabling it to experience more intensely and expansively the joys and woes of this life.

The week at Disney World, Universal Studios and Sea World was a whirlwind and Allistaire did great with her energy level and appetite. With the restart of steroids we expected more of the ravenous appetite we saw when she first went on steroids last July, but thus far I can’t say I really see a big difference potentially because of a smaller dose. I have actually wondered if they even prepared the liquid solution of steroids right given her non-impressive appetite, no seeming weight gain, chubby face or mood swings. Her CT next week will tell how effective the steroids have been against this strange Cryptogenic Organizing Pneumonia in her lungs. Our first full day in Georgia brought one time of throwing up and diarrhea that quickly turned into impressive quantities of near pure fluid. Early Tuesday morning, the day before we were to fly home, I had the frightening thought that rather than being a simple virus that needed to just work through her system, this could be C-Diff given how similar it was to when she had C-Diff in February. With the amazing help of my Aunt Kelli who is a nurse, by 9:20 that morning we were seeing a local pediatrician who, in conjunction with the on-call HemOnc Fellow at Seattle Children’s, assessed her for dehydration, ordered stool samples and wrote a prescription for Flagyl to use in case she turned out positive for C-Diff. My concern was that if she continued at the rate of diarrhea she had been going, she could get dehydrated fast and we would be on a plane for much of the next day. We need her kidneys in good shape! And C-Diff cannot be stopped without medication. It all turned out fine – all test results were negative and I am happy to report that yesterday’s stool was normal. I know you wanted to know that.

We arrived home Wednesday afternoon to a resplendent, green Montana fairytale land. Snow on mountains set against blue skies, green fields, trees finally leafed out, and wild flowers bursting everywhere. I went to sleep and woke up to a multitude of birds in song. I found myself smiling irresistibly at the sound of crickets and delighted at the sensation of cold feet on the kitchen floor, no longer donning Smart Wool socks and slippers. The green of the meadow in front of our house seemed almost outlandish, cloaked in a spray of yellow dandy lions. Calm and joyous peace spread silent and slow to the outer reaches of my extremities. Awww. I have not seen Montana green in two years. No matter how lovely Washington is this time of year, it is no longer my home. No, now I abide here and I have longed with insatiable desire to soak in the invigoration of this green.

It’s taunting really. Like, really, really taunting. Upon arriving home, I have had three days to unpack and repack for Seattle. On Sunday, June 1^st, Allistaire and I will again drive the 700 miles west to Seattle. Once again I am told there is no room for us at Ron Don and I am left with yet another unknown. On Monday Allistaire will start her day with Registration as an SCCA patient at 9:15 followed by a blood draw, an evaluation appointment with Joan Suver, our primary and amazing nurse with the Pediatric Continuing Care team, and a meeting with the nutritionist before we head over to Seattle Children’s for a Physical Therapy appointment and to round it all off, a CT at 4:15 to determine the progress in treating Allistaire’s lung condition. Tuesday morning, June 3^rd at 9:30am, Allistaire will have her 16^th bone marrow aspirate. Wednesday she will have an echocardiogram and then an appointment with our fantastic cardiologist, Dr. Sabrina Law. That afternoon she will have a dental appointment and an ophthalmology appointment. Thursday afternoon at 1:30 we are scheduled to meet with Dr. Carpenter to go over all test results and meet with the pharmacist, though I am quite determined and hopeful to get bone marrow results by Wednesday evening.

All of these appointments comprise the one-year post transplant LFTU (Long Term Follow Up) with the point of assessing the state of her leukemia, GVHD and the health of her organs. Thankfully, her CT on May 5^th did not show any evidence of disease outside of her marrow so this week’s CT will not involve oral or IV contrast and will be focused on looking at her lungs. I am thankful this is one aspect her health that is already known. Additionally, while a specialist will assess her heart, eyes, teeth/mouth and physical movement, there has been no evidence of GVHD in these locations based on the evaluation by Joan and Dr. Carpenter when we were in Seattle three weeks ago. The big questions are how her lungs are doing and whether or not there is disease in her bone marrow. Of course the situation in her lungs is serious and must be addressed, but obviously it is that bone marrow test that has me shaking. Allistaire has not had a bone marrow test since late January and since she has finished chemotherapy.

As has been the case so very many times, I don’t know how to pack. I don’t know if I’m coming home next week. I don’t know if this is the last Saturday afternoon at home in a long, long time. With cancer, every step forward into more treatment, is a step into darker and deeper waters. In the same moment that I am relishing the beauty of Allistaire’s gorgeous blue eyes and sweet, sweet little voice, I am scanning her cheeks for hints of pink. Though I long for a higher hematocrit from her last blood test nearly three weeks ago, I resist the urge to pull down her lower eyelid to look for anemia. Well, okay, I gave in once and told myself to knock it off. When she walks around the house, doggy clutched up tight to cuddle as she sucks her thumb, and complains, yet again of being tired, I find myself raging at her. I DON”T want to hear that you’re tired! Fatigue is that canary in the mine, the harbinger of doom. Go find something to do I yell. She sulks off and I continue the yelling and feel explosive emotion swelling my cells, causing my muscles to flex and yearn for bursting as I scream at God, raging and pleading for a normal life. Just a normal life God! That’s all I’m asking for! Dandy lions and crickets and grocery shopping for dinner and a picnic are enough for me. And I yearn for that stately noble peace that allows me to walk back into war with courage and determination. Instead I whine that I really just want to see the hay cut and to sit around a camp fire.

I just want a normal life Lord. Because the truth is I’m looking here, at this plane of existence, at this slice of reality. It still takes tremendous effort, exertion for me to Lift My Eyes, to look up, to look out, to consider lives beyond my own. I have walked up that mountain with trudging steps, so many times, having been asked again to trust the Lord with the life of my child, to be willing to submit to even her death. Dare I claim to walk alongside Abraham? Abraham could have turned away in action from what God called him to and for me there is no action possible that can thwart or determine the outcome of this bone marrow test. Though powerless I may be, my heart is a raging sea that seeks to yield to the voice of the Lord, telling it to be calm. Dare I claim further, to sit with Christ in that garden? Technically it is not my flesh that is in danger of being ravaged, but it is, it is. In Allistaire’s childish innocence, her life may be taken and she would not even know what has been lost. When I told her that if they found cancer in her bones, she might have to get tubies again and be back in the hospital, her little brow furrowed and then calmed as she exclaimed, “But I could bring my guys, right?” Yes, yes, of course Doggie and Piggy can come with you,” I replied. With this she seemed satisfied. My own heart would be utterly torn, not with neatness of sharp knife but with the ragged brutality of predatory teeth.

Let it pass from me Father. Take this burden away from me, I plead and ask over and over. I am so very tired. And perhaps it will, perhaps it will. We have had a year we never imagined would really be. Allistaire’s life has been sustained by more than double. Countless times mercy has been granted. But the past is no guarantee of future circumstances. The only promise is that He will remain faithful to hold me, come what may, and in this way the past lays foundation for future days. So I call out again and again asking for Him to be present, to hold me up, to show me His face. I listen with ear tilted back to those promises and exhortations echoed off the dark evergreens – be expectant – look for the abundance I will bring. My flesh twists and my fist clenches, but I want abundance for me, now. And I look over at Christ beside me in the garden and I see His weeping, the torrent of tears and hear His voice speak, “Your will be done Father.” Why? Why submit? Why yield? “For the joy set before Him, Christ endured the cross.” I can think of no words that more clearly articulate God’s answer for why He allows suffering and calls me to seek His face in the midst of it.

Yesterday I took the girls to the Dinosaur Park, their favorite. I determined to just sit in the sun on the bench. I had just finished reading a little story on Facebook about a brave little soul who willingly endured suffering for the love that would unfold as a result. Marleigh’s mom, Becca, posted at link to it, she whose little beloved passed from this life 5 months ago from AML. I was trying to hold back the tears when I looked up and saw my friend Kelly from BSF. Kelly was God’s grace manifest in the flesh to me that day. Through her tender words, I was reminded that there is already a bounty of life of which I can only catch fleeting glimpses. My Father, through His indwelling Spirit in Kelly’s life, helped strengthen my neck to lift my eyes. God is at work. It is simultaneously ordinary and mysterious. All too easy, I look only at my own life and demand what I feel is my right, forgetting that Christ willingly laid down His own life that life might spring up in all who look to Him. Life Eternal. Live Abundant. Is that not more glorious than the wee life I seek to clutch greedily to with my little finite fist? God only asks that I love Him and love others. Isn’t that ultimately what this is about? Through this fire, I have indeed seen His face more clearly and heard His voice which has in turn fueled greater swelling love for Him. And what if this blood spilled, these tears intermixed, are fodder and seed for life and love in other’s lives? Is that not what it is to love in this broken world? To lay down your life for the life of another is love. Can God so transform my heart into the likeness of His Son’s that I more and more willingly yield to a life broken and spilled out for the blessing of others? For the joy set before me – this is why I look up.

As I wrap up this post and at last go home to pack for the journey that resumes tomorrow, my ocean of angst is a bit more calm. My heart is little lighter. The creases in my face more relaxed. Here we go. Out again into that vast darkness where anything is possible. I cling to His promise to me, that even there, even in the blackest of dark, He will be found by me. He will give me ears to hear His voice. And I believe, miraculously, even there, with quavering, unlovely voice, I will sing praises to His name. He has been good to me.

This is the verse Kelly later texted me:

Psalm 27:13 “I would have lost heart, unless I had believed that I would see the goodness of The Lord in the land of the living.”

May12

GOOP or COP or whatever ya wanna call it

Posted on May 12, 2014 by Conglomeration of Joy

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Seems like we should be further along with this whole process. A lot has been accomplished but still, no firm diagnosis. Allistaire did great with last week’s endoscopy, BAL (lung wash) and lung biopsy. Thankfully her remaining IVs were able to be put in after she was put to sleep with a mask so she didn’t have to go through that terror. Nearly every “traditional” location was used though in those three days. Unfortunately, you can’t typically draw out blood from an IV so that means a poke in another spot. Waheed, the roving IV-Team guy, assured us he’s an expert in drawing blood from veins in the head – I think we’ll pass. The only wee complication from the lung biopsy was a small pneumothorax which is an air bubble between the lung and chest wall that can occur as a result of the needle biopsy. She had x-rays done on the portable x-ray machine one hour and several hours after the procedure to monitor it and because it was so small and didn’t get any larger, they were not concerned. Were it to be a large one, a chest tube would have been required to drain off the air, otherwise you get a collapsed lung. The one scare from my perspective (not the doc’s) was that her platelet count and hematocrit dropped slightly in Friday’s labs from Monday. The platelets went from 220 to 188 and hematocrit went from 39.6 to 36.6. These really are still great numbers and not a huge drop, but Allistaire’s platelets really never drop below 200 and her hematocrit likes to stay consistently up near 39/40. I am always on the alert for a downward trend which hails the terrifying possibility of relapse.

By the end of the day on Friday, a hypothesis was beginning to form as more and more test results came trickling in. I wish I knew how many tests for viruses, bacteria and fungi were conducted. Even for just one type of fungus such as aspergillus, a common culprit for fungal infections, multiple different testing methods are required. Twice in a week I’ve had to drop off a stool sample to the hospital lab late in the evening. One thing that I want to say as emphatically as possible is this: Pathologists deserve lots of love and credit! They are those invisible folk whose work is paramount to absolutely everything in Allistaire’s treatment. The often mundane and yucky work done in the lab is the foundation of so many decisions the doctors make. Test after test came back negative. There’s been no evidence of bacterial or fungal infection and thankfully, no evidence of leukemia in the lungs. But that leaves the big fat question of what is going on then? The other outlier question is how this high eosinophil count is connected. Dr. Pollard called late on Friday to say that the working idea is that Allistaire has BOOP (Bronchiolitis Obliterans Organizing Pneumonia) or more recently named COP (Cryptogenic Organizing Pneumonia). This is a non-infectious pneumonia that is actually, in someone like Allistaire who has had a transplant, a form of GVHD (Graft Versus Host Disease). Treatment for this organizing pneumonia is steroids for a month or two and then a taper. Because steroids come with their own host of bad-news side effects, the doctor’s are being very cautious and careful in making this diagnosis. For this reason, while the pathologists at Seattle Children’s have finalized their report as of this afternoon, the samples will be sent over to SCCA tomorrow and examined. COP is a relatively rare disease but fortunately the pathologist who will be going over all of Allistaire’s data has been a pathologist at Fred Hutch for 40 years and has pretty much seen everything there is to see. Again, thank you Mr. Pathologist, for your amazing long-term commitment to this field – your expertise is an amazing gift to us!

Another component of considering what treatment will be needed, was that Allistaire had to be examined today for signs of active GVHD by Joan at SCCA (Dr. Carpenter was out-of-town today). There may be a very low-level amount of GVHD on her scalp that has been sort of crusty for the last month and a tiny amount in her stomach as shown in the endoscopy biopsy. Thankfully, these are so minimal that they do not require treatment. I was delighted to hear Joan declare that Allistaire looks really, really good and that there is no evidence of GVHD in her eyes, ears, mouth, joints or the majority of her skin. Such a blessing and gift it is that she has done so well so far. Her type of transplant, that of a peripheral stem cell transplant rather than a whole marrow transplant, is well documented to produce the worst and most chronic GVHD. I can only guess that this type of transplant which was required as part of the clinical trial protocol, also has the best shot of creating GVL. Of course, I am only guessing with my crude knowledge of this whole complex world. The other news of the morning was that Allistaire’s platelets and hematocrit are at least stable at 185 and 37 respectively. It was a tremendous relief to me that they had not gone down. I was so hoping that they would just rise to their preferable lofty heights so I would have no cause to worry and far less need to cling desperately to the Lord in prayer, but wouldn’t you know it, I think He actually wants me to depend on Him. Geesh.

So as things stand now, late on Monday night, May 12th, the hope is to have a finalized pathology report by Wednesday afternoon, and thus a firm diagnosis. Dr. Carpenter will be considering Allistaire’s case and assuming this really is COP, he will determine what dose and sort of steroids he will prescribe. The goal is to give the lowest dose possible that is still effective. They will be looking into whether or not inhaled steroids would be sufficient as this would be a better option than a systemic steroid such as prednisone which is taken orally. There is of course the very negative side effects of steroids, but there is also the issue of their impact on Allistaire’s ability to fight cancer. I was comforted to learn that because Allistaire is nearly a year out from her transplant, she has already had the majority of the GVL (Graft Versus Leukemia) effect of her donor cells and they are now far more fully established than earlier in the post-transplant phase. This means steroids at this point will not be as detrimental in terms of them suppressing her ability to fight any remaining cancer cells. On the other hand, should she relapse, it seems she could be disqualified from a number of trials for being on immune suppressants (steroids in this case). Of course, the eager hope is that she is still in remission and will have no need of further clinical trials. And dare I say this, I was told today that if Allistaire makes it past one-year post transplant without relapse, her chances for relapse diminish drastically, down to 10%. Now, numbers, statistics, they’ve proven to in no way dictate Allistaire’s course, so I hold such info quite lightly, knowing she is her own complicated cancer case. More importantly, it is God who holds Allistaire’s life and He is not swayed by statistics. He will do as He pleases which is both terrifying and glorious.

Should all go as hoped, we will have a diagnosis and treatment plan by Wednesday evening and can head home on Thursday. This would be SO amazing! Joan says Allistaire doesn’t need to be seen again and doesn’t need any more labs until we return from Allistaire’s Make-A-Wish trip to Disney World which looks like it really might actually happen!!!! I can hardly believe it and I probably really won’t be able to until we are on that plane. In the far periphery of my mind is the joy of imagining the look of shock and joy on Allistaire and Solveig’s faces when we tell them that we are going to get to go on this amazing, magical trip. Again, almost too hard to believe. We are scheduled to return from the trip on Wednesday, May 28th. Then a few days later, on Sunday, June 1st, we’ll have to turn back around and head to Seattle for all of Allistaire’s one year post-transplant testing, including a bone marrow test on the 3rd.

I was so anxious about this trip to Seattle because I feared we would become entrapped here. That’s just what happened. Fears confirmed. I am not actually crazy and no, she’s not fine just because she looks fine. But, so far, it looks like we might escape true imprisonment. I leave that fear for June and that looming bone marrow test. I will tell you, it was the strangest experience to go back to the Cancer Unit – a place I have only visited once since Allistaire’s discharge last July and a place she has never entered again until last Thursday. It is a clashing of homecoming and revulsion. There were SO many faces that are just dear, dear to my heart – nurses and the Unit Coordinators and Natalie from the bone marrow team. Amazing, incredible people who have become painfully and delightfully woven into our lives grace those halls and rooms. The light and colors there are beautiful. I may have nearly forgotten how to work the fancy new TVs but I have not forgotten the deep, pervasive sorrow and fear of life in that place. You do not ever get over hearing a baby crying on an oncology floor. Babies should not have cancer. As I lay in that strange fold-out bed couch thing in the early morning, I remembered the countless mornings, nearly 250 times, I rose to meet numbers on a page, those blood counts, that decreed the course of our lives. And I prayed and prayed that this would be the last time I lay on one of those beds. I have not figured out, in all this time, how to love Allistaire less. Rather it seems I cannot get enough of her and as she grows and times passes, I love her more and more. My grip on her seems no less. Help me to love you more then Lord, I cry out. Help me more and more love you and hope in your goodness and your plan for my life. Help me God Above to put my hope and faith and trust in your definition of life and victory that so very far surpasses mine.

Apr6

Ephraim

Posted on April 6, 2014 by Conglomeration of Joy

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With elation and with delight at the sunny afternoon we drove down the hill of the hospital campus. It was nearly four o’clock and we were just leaving the hospital on the day that was supposed to have been free and open, simply asking to be filled with some adventure only the Seattle area could offer. Instead, an ANC that was trending down forced yet another set of labs and visit clinic appointment. The doctor we saw the week before didn’t want to have Allistaire’s lines pulled if her ANC was going to be low and put her in a vulnerable position, possibly needing antibiotics. And so it had happened again, a seemingly ordinary visit to clinic resulted in another little bomb going off, this time Allistaire might not be able to get her lines pulled as scheduled. And here’s the thing, lines get pulled precisely on Tuesday mornings, only on Tuesday mornings. In addition, they only have a few available spots on these sacred Tuesday mornings and so they tend to get booked up weeks in advance. Not getting her line pulled on Tuesday, March 4th would mean either having to stay much longer in Seattle or another trip back out. But there it was, the super awesome, fatty ANC of over 2,000, and so we stepped lightly out the door of the hospital on that Monday afternoon, lab results clutched in hand.

I smiled as I drove down the hill. We were going to get to go home the next day and not just home, but home with no more lines. Allistaire was officially done with the current plan of treatment. She had completed her seventh round of Azacitidine just the day before and we were not scheduled to return until the first week of June for her one year post-transplant followup. With a bit of terror I had asked Dr. Gardner no less than three times, was she sure, like really sure that Allistaire didn’t need another bone marrow test before then? With a smile she repeatedly said, “No.” And so miraculously we were once again released out into the wild of ordinary life. In only a few short hours we would be heading east on I-90 with months at home ahead of us. The sun sparkled all over the furiously budding plants. Everywhere spring was bursting, daffodils and crocuses and the outrageously extravagant purity of the cherry tree blossoms against bluest sky.

Here and there I cast my gaze on the life unfurling once again, joyously mystified that the world had really rotated all the way around, bringing us here to this most delightful season. And there, through the glare of sunlight, I squinted to see what scene lay down the hill at the top of the staircase leading away from the River Entrance. This crest of stairs I have climbed so many times, heading to the patient family parking, always a sense of disorientation, of joy at being released out of the confines of the hospital, into the absurd wideness of the rest of the world going about its day. Yes, it was the woman I thought I recognized, but whose name I still don’t know. And she seemed to be crying, hands up around eyes, bent shoulders and surrounded by a throng of family. As we neared my observations were confirmed but my mind spun round and round trying to place the source of her sorrow. I just saw her a few days ago at Ronald McDonald house, smiling and waving at me as she ascended the stairs toward her room, her little boy hoisted on hip, bald head, feeding tube and smiling eyes to match hers. What could it be, oh God, what could it be?

Allistaire and I drove on, the list of tasks to complete before we had to be at the hospital the next morning at 6am weighing heavy. Thank goodness I’d thought to go ahead and get the oil changed but still we needed to fill up the gas tank and pack up our room at Ron Don. But news of Snoqualmie Pass being closed because of avalanches with no known reopening time confused my choices. I was yet again met with plans upturned and forced waiting. Near dark we pulled into Ron Don and I saw her again, wiping tears from her eyes, a brief embrace with staff and a hurried walk to her van. “Anita, Anita, what is it?” I called to the house manager. I knew she could not answer me, she was not allowed to say but I knew from the tears in her eyes and the downward turn of her mouth. I rushed up to the passenger window of the van and knocked hurriedly, the engine already running. And there I beheld her face in the lamp light, tears streaming and a picture of an adorable little boy, head covered in an amazing wealth of dark curls. Her face was strained and seemed to implore as she repeatedly pointed at the picture, “Mi nino, mi nino, mi nino.” I glanced further into the darkened car to see it filled with their belongings and the grim face of the father, hand on gear shift, impatient to leave. I backed away and let them go. The language barrier allowed not even for condolence and I prayed my face had shown my sorrow and honor of their child’s life. For two years we have crossed paths, coming and going to appointments, always with smiles and waves and hopes that such could communicate where words were impossible.

Salvadore. He died that morning at 9 am and the halls filled with her wailing.

Then they just drove away. There was nothing left to do and a car seat empty.

Twenty-four hours before, I read of 9 year-old Zach’s death on February 7th. Dead from complications from the chemo, Clofarabine, given in his third transplant only weeks prior. Like Allistaire, he too battled hard against AML. Allistaire had Clofarabine as part of her transplant regimen. It seems to have played a major part in saving her life, but it could have also been her death.

Pack and forth, my heart slams around. Elation. Devastation. Head lifted to take in the sun and shoulders crushed down.

Snoqualmie reopened. We would be able to leave after her line pull in the morning. Lookout Pass at the Idaho-Montana border and miles east into Montana then closed because of more avalanches. I could head home but how far could I get?

My joy at this release and hope for the long road of life ahead tempered. I keep seeing her face and hand fervently tapping the photo crumpled from being gripped so hard. As before, everyone wants to hear that Allistaire is well, that she is fine, that this season has passed. I look at those spring blossoms and consider that this is the third rotation of our planet where cancer has saturated our days. She’s fine right? The words yell at me without sound, “Time to move on. Phew, glad that’s over.” For some reason that Portlandia episode comes to mind where they keep saying, “Put a bird on it, put a bird on it,” as they rush from one object to another, emphatic that adding the imagine of a bird will make it look just so cute, so hip, so right. Okay, brush off your hands, pack that away and move forward – she’s going to preschool next year, right? And inside I crumble and scream, “I don’t know! I don’t know! How in the world should I know?”

I wake up in the morning and stare at the ceiling. I lay there. I really should get up, but I am baffled by what I’m to do. What exactly is this day supposed to look like? How should I be spending my time, because how much time do I actually have anyway? I look around at my life and I see that I am behind in seemingly every direction, every avenue shows evidence of neglect and loss. Time to get back to exercising, time to try to look like a cute, fit, outdoorsy Bozemanite. Time to buy skis at the ski swap and get back to book club. But there’s wreckage, see? Images of a town laid flat by a tornado come to mind. Folks wiping away tears as they search through the rubble of their once home. But I fidget and twist, annoyed that this image does not fit the terrain of my life. Not that I want such a scene to be indicative of my life, but I grope for contours, edges, corners that do define. For there is wreckage but too there is clutter and also beautiful, jagged rocks jutting out, exposed by erosion and storm. It is not just the task of clearing debris and rebuilding, no I survey and wonder what stays and what goes? Where do I build? What do I build? And all the while I am just so tired.

We arrived home on March 5th, the day before Allistaire’s 4th birthday. The immediate task before me was to unload the Suburban once again and put everything away. Even this overwhelmed me. But what do I do with all this stuff I had for our life at Ron Don? There sat my Trader Joe’s bag that permanently housed the purple flip-flops I wore in the shower at the hospital and the purple cup I drank out of, refusing to go so far as to succumb to the hospital paper cups. Even decorations purchased to make our room in Seattle feel a bit more like home – they perplexed me. The broom and dustpan are redundant as we already have the same in our house here in Montana. Oh gosh, I just don’t know. Do I give it to Goodwill or pack it away? The majority of tasks repeat the question of what’s going to happen. Are we done? If not, how long do we have? How far back into the closet do I store that bin? It’s the question no one can answer, despite many attempts. A second relapse of her cancer would be still worse than it was the first time. The options have dwindled to less than a handful – either a second transplant or various clinical trials.

The pressing need to have a birthday party for Allistaire staved off the questions for at least a week and a half. The woman who once planned and executed bullet-point actions with finesse was nowhere to be found. I had no idea what sort of party to plan and had only come up with a date after her birthday had already passed because for a long time I didn’t even know when we would be home. But really, what could we even do, I whined. She can’t be around kids or animals or crowds and it’s snowing outside and stinkin’ cold. I bustled around putting things away, all the while consumed with the looming necessity to hurry up and figure something out. I mean, this was her fourth birthday, a birthday that several times I sincerely thought would never come. I could still see my hands pressing down the tape on the pink wrapping paper a year ago, wet splotches from tears marring the paper, wondering if I would ever again wrap a birthday present for her. But here we were. God had brought us through. Another year of life generously, mercifully given. What sort of party could possibly celebrate such a wonder? The party was insufficient in its glory to reflect the glory of another year of life, but it was pretty fun, both to plan and experience.

Pirates and mermaids. That would be perfect – two things Allistaire loves and as I looked around my house I realized I had a ton of stuff already that would totally work (more for the mermaid part than the pirates :)). I exhausted myself that week, fueled at last by purpose and a clear-cut goal. Amazon Prime delivered pirate hats, a pirate flag and parrot, fake coins for the treasure chest I needed to paint, sand to set candles in and a sweet, blood-thirsty looking shark pinata. Oh, and there was also a really gorgeous mermaid costume Solveig picked out since she had outgrown the one she had from Halloween years back. Sten spent evenings constructing a pirate ship out of cardboard boxes with cannons and an anchor. My sister-in-law, Jo, helped me put together a treasure hunt complete with a message in a bottle, a treasure map, clues at each stop and super silly activities like seeing who could shove the most marshmallows in their mouth and still be clearly heard saying, “Chubby bunnies talk funny.” Dinner was to be cheese fondue, elk steak, kale caesar salad and tiramisu, all at Allistaire’s specific request, or perhaps I should say, chosen because these are her favorites, except the salad – she won’t touch anything green. Long after the left-over cheese fondue from Christmas dinner had been eaten up, she kept asking for, “pondue and steak.” Long after her birthday party was past, she kept asking for some more of that, “brown and white stuff,” (tiramisu). We had a wonderful evening and delighted in seeing one another dressed like pirates and glammed up like mermaids. Through tears and a brain muddled with emotion, I stood at the dinner table and attempted to express my thanks for a life sustained and the marvel of the overwhelmingly glorious and unguaranteed gift that life is. Likewise, Sten through tears thanked his family for the tremendous support they have been in numerous big and small ways over the past year.

A week passed with another doctor’s appointment and Allistaire’s first labs drawn from her arm in a long time. “A pokey,” we call it. With this first pokey we’ve begun a Tuesday tradition of going up to Murdock’s Ranch Supply after clinic and purchasing a little seventy-nine cent rubber animal in reward for her bravery. St. Patrick’s Day marked Allistaire’s very last dose of prednisone and my first attempt at baking a loaf of bread, Irish Soda bread. Being a Murphy by birth, I thought I should do something to celebrate and so I also made Hoppin’ John only to remember later that day that Hoppin’ John is the traditional southern dish to celebrate New Year’s, not St. Patrick’s Day. Oops. I tried. And now that Allistaire was completely devoid of immune suppressants, we watched with vigilance for signs of GVHD, her donor cells rearing up to fight her flesh once again. Thankfully, her appetite only seemed to continuously improve with no signs of pain or discomfort and she continues to slowly gain weight. We breathed a sigh of relief that there did not seem to be any gut GVHD happening. But then there was her face, growing steadily more red and oddly, around her eyes. I am finally, actually learning to chill out a little with all these ebbs and flows and mysteries of Allistaire’s health. At long last, I can actually remind myself that if it’s something significant, it will make itself known, and lots of things will just go away on their own. More significantly, I am working at the practice of bringing my anxious fears more swiftly to God rather than fretting over them for hours or days first. And wow, it actually works. It’s not like the relay race I thought my burdens were where I carry them for a while and then eventually hand them off to the Lord. No, more and more frequently, they barely graze my hands before they’ve been delivered over to Him.

On Friday evening the 21st, I had the joy of attending my second Bozeman 3 board meeting. Clustered around the table was a small group of people trying to put their hearts into action. I participated in the conversation, giving an update on Allistaire and listened to the updates on Caden and Stellablue. We discussed the fact that our 501c3 non-profit status is still pending as the IRS is still working on applications from May 2013 and ours was submitted in September 2013. We brain stormed fundraising ideas and the upcoming events including Garage-A-Rama at the county Fairgrounds and the Dodgeball tournament to raise funds to support pediatric cancer research. I had been setting things aside for a while and asking others to do the same in anticipation of having a garage sale in early summer where all proceeds would go support the Bozeman 3. Then suddenly in a week’s time we instead would be setting up our stuff at Garage-A-Rama where we had been donated a booth. I offered to make some posters as a means of communicated who we, The Bozeman 3, are and what we’re about. Jason, Caden’s dad, helped crystallize our mission – The Bozeman 3 is about 3 things: financially supporting other Gallatin County families who have a child with cancer, provide emotional and social support through mentorship with another family whose child has had cancer and to support pediatric cancer research. I left that night excited about the work ahead and humbly overjoyed that we, we broken and few people, could actually make an impact and help others on this very hard road. And I left with a list of tasks that then consumed the coming week.

So I wrote and labored over wording and printed and cut and taped and picked colored poster board and paper and it all felt like I was putting together a junior-high science fair project. And I laughed and smiled with the delight that we were, in these ordinary moments, laying the foundation for an organization that really was the unfurling of years of sorrow and pain and fear into hope and love and camaraderie. We had passed through the fires and were not dead, and not just not dead, but really more alive. Life still pounds furiously in our veins and our hearts swell with passions grown out of endless hospital room hours and tests and medicines and isolation. Pam and I would soon stand at the top of the “M” trail which overlooks the entire beautiful Gallatin Valley and the surrounding ring of mountains. We stood with our children, all of our children. Caden and Allistaire made it all the way to the top, through challenging terrain and with cheery determination. Pam reminded me that we had once talked, rather dreamed, about the day we would hike the M together, our cancer-free children at our side. Throughout all these days and activities, through throngs of people at Garage-A-Rama who would ask the price and we would sing out – it is whatever you want to give, it all goes to support children in Gallatin County who have cancer, through the fevered joy and sweat of the Dodgeball Tournament where the pictures and stories of some twenty children lined the wall and people came together to nail each other with bullet like balls and children danced in bouncy houses, and around that crowded board meeting table, I smiled and smiled and my heart swelled.

So there is wreckage, but most certainly not just wreckage. The wounds are deep. The pain is wide and aches, it is sharp and stings. In the parent group time this morning at Cancer Support Community, when given the opportunity, the rush of heat and tears flowed easily, despite the fact that I don’t cry too often these days. But there it is, these sorrows pooled and so easily torn open. I have heard it said quite a few times and my friend reiterated it the other day. We could never have chosen such a road, but, but, we would not now wish it to have never been. That is the mystery and is most assuredly the greatest delight of my soul, to see the Lord’s redemption of what has been lost and broken. How God does and will continue to raise the dead and bind up the wounds of the frail and broken. It is the mystery of rising up strong when you have no strength left, but the Lord swells in and through you. It is the uncanny and other-worldly beauty of these paradoxes that draws my heart closer in delight to my God. I look and see how He breaks and severs and robs. He ravishes and tears and lets me sit in the dark. He lets me fall. How can this be? This is not what a good God should do! And yet, He audaciously takes useless dust and breathes not just life, but HIS life into it and what was once temporal has become eternal. He sends through the fire and the torrent of flood, a destruction and a revealing. So I stand and survey the landscape of my life, the terrain before me.

Allistaire’s red face turned out to be a drug toxicity reaction to her anti-fungal drug, Voriconazole. The transplant doctors have seen it before and had us discontinue its use. She’s been on it for over a year to treat the fungal nodes that have grown on her lungs throughout the months of such severe immune suppression. Ironically, only in the last few weeks had I really been adhering strictly to the guideline of giving it one hour before or after food. Until I saw the instructional sticker on her most recent prescription, I had only been waiting 30 minutes between her morning dose and breakfast and even less at night since she takes so long to eat, finishing at nearly bedtime. My guess is that in more carefully following the directions, she was actually getting a higher dose than ever before and all her recent time in the sun only served to exacerbate the rash on her face. The plan was to do a CT in Bozeman and hope that the 2mm fungal nodes, detected on the CT a few months ago, would be gone and she could drop down to a less intense drug, Fluconazole. Dr. Ostrowski also wanted to check her blood sugar level because it had seemed a bit low the past few weeks. So the Friday that we brought our loads of stuff over to Garage-A-Rama, Allistaire had a Cat Scan and a finger poke to test her blood sugar. The latter was fine, but Seattle’s review of the CT determined that the fungal nodes had actually grown in size upwards of 1cm and were more numerous. They would prescribe her a new drug, Pasaconazole, which costs nearly $5,000 per month. It was a bit of a bear to get the pre-authorization through with insurance but just days ago she began her first dose. The hard part of it all to swallow was the requirement that we return to Seattle for a CT once she’s taken the drug for four weeks. If the next CT does not show a reduction in size and/or number, they will do a biopsy to determine if it’s something other than fungus. The other options would be some sort of collective pneumonia related to GVHD or it could be leukemia. That old fear of entrapment seized me. Seattle, despite being my home for so many years and a place I love, these days feels more like walking into a concentration camp. There is always the sour fear of death, and if not death, at least long-term imprisonment. May 5th we go back. We drive the 700 miles and hope to find housing for a stay of unknown length. If all goes well it could be a trip only for a day and if not, well then, that I don’t know. The sense that my life feels like walking through a mine field was validated once again.

I gave my friend the update on Allistaire because I wanted her to pray for me, she who lost her husband to cancer, her husband who she lovingly called her “True North.” “Give thanks Jai,” she said. She wasn’t being flippant. She wasn’t being dismissive. She was speaking God’s word to me, words that help reorient my heart to my true north, to the anchor of my soul. It’s been a month since we’ve been home. I cannot wait to live until this is all past, until Allistaire is fine, until my life is all cleaned up and I can fit into my old pants again. And it is not as simple as a clean slate. The old and the new mingle. The wounds and wreckage and clutter sit side by side with the unfurling spring and strength and beauty. The pain and the joy co-exist. I don’t really know the way ahead. I am still not clear on where to rebuild and where to clear away. But part of the beauty is that this bullet-point task-oriented girl is growing happier and more at rest just sitting in the midst of it, because I am with my Lord. I might stand up and strike out in this direction or that. I might be hard at work, toiling under the sun, rejoicing over the simple joys of this life I have learned to treasure and gather up. All of sudden another knife might sink deep into my gut, with the gush of sticky hot blood. My fear is falling away from me. I am less burdened. I am less shackled. Maybe it is because my belief in this wild, unruly God is becoming more enfleshed, filled out. I am no longer just seeing God, but more and more tasting that the Lord is good and that all of my life is wrapped up – consumed by this uncontainable Being that I can never lose.

Countless times in God’s Word He calls us to remember, to look back and give thanks. Remember. Give thanks. Give thanks for what has been and in so doing, be emboldened to give thanks for what is and what is to come. I look back to that grey December morning when my heart had first been torn asunder. I looked out at those black green trees, clouds rising like spirits and I had no words but help Lord, my God help me. Be expectant. Look for the bounty I will unveil. Stake all your life and hopes in me. Be expectant. Lift your eyes. These were His bitterly sweet promises to me. And so I have looked for Him. I have been watchful for bounty. I love, love when Christ said, I did not come to bring life, but life abundant. How extravagant is my Father. The jewels of His faithfulness I cradle in my palm, in my heart. In a way they don’t look like much, not too impressive. But like seeds, the life that they are growing up is glorious and I continue my search for His face and His goodness. The name Joseph gave his son so beautifully echoes my heart, the pains and joys that dwell there.

Ephraim.

Genesis 41:52 “The second son he named Ephraim and said, “It is because God has made me fruitful in the land of my suffering.”

Here’s a few pics from exactly one year ago. Allistaire had begun her second round of chemo since relapse – far earlier than expected because blasts had shown up only 16 days into her first round. The doctors didn’t wait for her blood counts to rise, they just hit the cancer again. She was 37 days with a zero ANC. It took 40 days for her to lose her hair and then it went quick.