A Thousand Barricades

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IMG_1926Written yesterday:

Your body rebels and declares no one should need rise before 4 am, and yet out there in the dark crisp cold of night, yet early morn, you relish the clarity of stars and moon and blue light on snow as though you have snuck in and been witness to that which is the earth’s own private beauty, beauty sown in the hours that only animals inhabit.  My lungs stretched and with wide-spread arms, pulled in freshest air and with glee, took in the tiny twinkle of stars, each one called out by name, by my God, by my Father.  And with deep breath, I asked again that the Lord would hear my cry, that He would hold me up in the day and days to come.  I thought back to the unexpected conversation with Nate about sorrow, about loss, about fainting hearts and my words that yearned to encourage that it is good to be broken, to be at loss, to know neediness because it is the way into knowing God and mysteriously we find ourselves stronger than expected because our need and our brokenness has led us to God, to be bound to an almighty, all-knowing good God.  And under that purest clear of night sky, I asked myself again, if I actually believe it all.  My answer came, not with the request for this outcome or that, but simply, show me your face God and help me to yield myself and my life once more, again and again to you.

I left Bozeman this morning and arrived in Seattle in clouds and gray, unseasonably warm with no need for a coat.  As I crept through traffic along I-5, I thought back to that December day exactly three years ago.  Dr. Tarlock called on that Friday afternoon to say simply that they had found tumor cells in Allistaire’s bone marrow and we needed to come to the hospital.  Results weren’t supposed to come until the following Tuesday, but there was the word “cancer” and “tumor” scrawled on a pink sticky note and then the warm pink glow of winter afternoon light on the faces of two little girls in car seats as I drove north on I-5.  An overly peppy song played in the car with words that defied the upbeat tone:  “Blessed be your name in the land that is plentiful, where your streams of abundance flow.  Blessed be your name.  Blessed be your name when I’m found in the desert place, though I walk through the wilderness, blessed be your name.  Every blessing you pour out, I turn back to praise.  When the darkness closes in, Lord, still I will say, blessed be the name of the Lord…blessed be your glorious name.  Blessed be your name, when the sun’s shining down on me, when the world’s all as it should be, blessed be your name.  Blessed be your name on the road marked with suffering, though there’s pain in the offering, blessed be your name.  Every blessing you pour out, I turn back to praise.  When the darkness closes in Lord, still I will say, blessed be the name of the Lord, blessed be your name.”  Allistaire, never able to pass up a good beat, rocked out in the back seat and bright smiles lit up their faces.

Lulled by traffic and familiarity with the song, I startled at the words, “You give and take away. You give and take away. My heart will choose to say, Lord blessed be your name.”  I looked in the rearview mirror at those two happy faces of my daughters, oblivious to what ill fortune had befallen us, and wondered whether or not there was a future that would still hold those two sets of laughing eyes, laughter playing off laughter.  And so, from the very beginning I have looked this threat, this terror, this sorrow in the eye.  I refuse to turn away or diminish, but I look it dead on and I call out to the Lord.  Help me, oh God above, you who call out each of the stars by name, give me eyes to see what good you will bring out of this brokenness and more than anything, help me to fix my eyes on you and call you blessed because you have upheld my heart and strengthened my faith that I might endure for the joy set before me, if even the joy does not come until I “cross over the river and rest in the shade of the trees.”

I wanted to go home.  Last time Allistaire relapsed, a span of five whole months passed before I returned home.  That was far too long to be away, but in those days, and even in these, home feels like another world, a world which might only exist in my imagination and it has seemed easier not to taunt myself, but to stay fixed on the reality at hand, to keep my hand and heart on the endeavor to fight for Allistaire’s life.  But my sweet mother-in-law took me at my word that I wanted to be home more often, and gleefully declared, “let’s be radical.  Let’s just make it happen.”  So while only 41 days had transpired, I got on a plane late Thursday night.  The Bridger’s were still there, glowing with snow covered ridge in light of fullest moon.  I walked through the door and the same strange smell of our home, greeted me.  I stood, unmoving, staring at the kitchen counters and could hardly believe that not long ago, I lugged in bags of groceries and stood with cutting board and knife preparing dinners, trying to push myself to try new recipes on occasion.  How often had I stood on one side of the island, preparing breakfast, cleaning up breakfast, emptying and filling the dishwasher while Allistaire sat on the opposite side, breakfast and lunch day after day after day.  Had that really ever happened or has she always been sick, always been bald and in bed, always been vulnerable with no white blood cells, always, always fighting her “sickness.”  Had there ever really been ordinary days, most beautiful, most cherished, ordinary days of incalculable value and beautiful ordinary delight?

In the morning I opened my eyes to that same beautiful wood paneled ceiling, to the blue of sky up the hill and stateliness of evergreens framed by my bedroom windows.  With trepidation, I entered her room.  There hung her school uniforms, white and pale blue shirts with peter pan collars and navy and plaid jumpers, worn sometimes with white knee socks and sometimes with navy tights.  I found a bag with her school pictures, gym shoes and the cloud, puffy with cotton balls and raining bright silver streamers of rain.  And my breath caught in my throat as I realized how close this all was to walking into the abandoned room of a dead child.  I looked up the wall at her artwork, and the number one outlined in pinto beans and bins of toys on the floor.  And the question stabbed through me over and over, what if she never returns?

Wednesday had been a particularly hard day.  Sten left the day before, great welling of tears in his eyes as he held her goodbye, not knowing if he would ever again see her with hair.  Who would she be when he came back?  Her hair had started to fall out and began to coat everything, including Doggie.  Hair all over her clothes, in her mouth and food.  I told her I would cut it before I left, but I wasn’t prepared for her request Wednesday morning that I cut it because it was bothering her.  In my unconscious mind, I still had one full day left with her before more of her would be stolen away.  But I knew she was right, and I forced my hand to function and grasp the scissors and not gasp at every cut through the blonde hair that has never had the chance to grow more than five inches long.  And there she sat, part of her gone and in her place a prison inmate, a child being sent to the gas chambers.  We walked a slow drudge to the bathtub room to wash away the debris of life, of a hoped for life, a life that had appeared to be thriving.  I asked the CNA to change the bed while we were gone, to take away the scant pile of blonde clippings.

Two hours of eating lunch only yielded five bites and not even a cup of milk completed.  I had to entrust the nurse to put her down for her nap so that I could drive downtown for the transplant consult meeting with Dr. Marie Bleakley.  I sat across from her just as I had a year and a half ago, to go over the transplant for Allistaire, to hear the heavy realities and hopefully be shown the ray of light in all the pressing darkness.  The one year survival rate for patients getting a second transplant is 25%.  Of those, only half live more than five years.  So 12.5%, that’s the odds, if she can even get to transplant.  In her favor is that fact that she is a child with a healthy body, besides cancer, that because she has not had TBI (total body irradiation) they can give her the most powerful transplant in existence.  Lastly, she was in remission for nearly a year which says something about the aggressiveness of her disease.  However, in order to get to transplant, the doctors will make a subjective decision about whether or not she has “responsive disease.”  They must see a significant improvement in her chloromas (the six places of solid leukemia).  If her disease can march ahead undaunted in the face of these four powerful chemotherapies she has just received, a second transplant is highly unlikely to stop it.  So while, thankfully, there is a transplant that does not require remission, nevertheless, they need to see a disease that gives evidence that it can be shut down.  If this round of chemo does not work, must likely we will go to Denver to do the DOT1L inhibitor trial.

The most optimal transplant for her is the clinical trial, for which Dr. Bleakley is the principal investigator.  What is unique about this transplant, is not the conditioning regimen (chemo and radiation) but what is done to the donor cells.  Dr. Bleakley’s team, in her words, “attaches little magnets to the naive T-cells and removes them, returning the remaining cells to the patient.”  The goal of doing this is to reduce the incidence and severity of GVHD (graft versus host disease) in which the donor cells see the host/patient as foreign and attack the body of the host.  GVHD can be debilitating and even cause death.  So while it is really desirable to reduce GVHD, there is the concern that in doing so, there may be a reduced GVL (graft versus leukemia) effect.  The great hope of transplant goes beyond the decimation of the conditioning regimen, and is more firmly rooted in the science of the donor cells seeing the host’s cancer cells as foreign and killing them.  Forty-six patients have undergone this manipulated T-cell transplant and there are quite promising results in terms of reduced GVHD.  I was also delighted to learn that there has been a reduced incidence of relapse amongst the AML patients on the study.  Dr. Bleakley says that perhaps they are removing some GVL effect when they remove the naive T-cells, but it seems they are also enhancing/enabling the GVL effect more greatly specifically with the AML patients.  An otherwise very soft-spoken woman, Dr. Bleakley becomes much more animated when she discusses the power and hope of immune therapy.  She explains that she and a number of her colleagues were trained under Dr. Stan Riddell at Fred Hutch who was in turn trained by Dr. Phil Greenberg.  The primary purpose of developing this transplant is to provide a platform for the immune therapy that doctors like Dr. Greenberg and Dr. Jensen are developing.  The idea is this – you can’t have raging GVHD which requires immunsuppressants and make use of the wonders of modified T-cells – the fighters of the immune system.  There is no point in being given amazing, super powered T-cells if you just to have suppress them.

Needless to say, listening to her describe this new transplant that would provide the best shot at being able to receive the modified T-cells that Dr. Greenburg is developing, was the ray of light I was desperate to cling to.  Of course, simply getting Allistaire in a position with her disease to be able to even have a transplant feels nearly impossible given how many treatments failed the first time she relapsed.  Then Dr. Bleakley revealed another major barrier to Allistaire being able to have this transplant.  She must have a U.S. donor.  The donor search team has identified a 10 out of 10 donor for her in the German system, but this transplant necessitates a donor from the States.  The reason for this is that as soon as the cells are harvested, they begin to die and degrade.  The manipulation of the T-cells for the trial requires an entire day of work once the cells arrive.  By adding on the time it would take the cells to get from Europe to the U.S., the cells would probably not be in good enough condition for the transplant.  Because the cells are being manipulated, consent from the donor is required.  This process and approval has been set up for the trial in the U.S. with the FDA.  Not only would the cells be too old if they came from overseas, there is no regulatory process in place to allow a foreign donor.  It is possible that there is someone on the registry in the U.S. that could be a match for Allistaire, but that is currently unknown.  The protocol for the donor search process halts the search for a donor once an acceptable donor is located.  The probable reason why it has been easier to find Allistaire a donor in the German system is because the folks on that registry actually pay to be on the registry and renew their commitment annually.  Additionally, I think these potential donors start out with giving a blood sample unlike U.S. donors who only give a swab of cheek cells.  This means that the German system can offer much higher level testing/matching than the U.S. system straight out the gate.  The German registry also pays for the remainder of the testing necessary to determine a match.  In the U.S., it costs three to five thousand dollars to test each potential donor.  This is why the search protocol is to stop the search once a donor is located.  There is no reason to continue spending money to test additional potential donors, if you’ve found one that will work. Dr. Bleakley has instructed the search team to pursue U.S. donors, so we will have to wait and see.  Kind of a wake up to realize that though there may be 22.5 million people on the U.S. registry, there still may not be a person that will match Allistaire and allow her to have the opportunity for this amazing transplant option.  Are you on the bone marrow registry? Click HERE to join.

If Allistaire were unable to get a matched 10 out of 10 U.S. donor, and she was in a position to receive a transplant, she could have a the standard transplant and use the donor from the German system.  Like the naive T-cell depleted transplant, a standard transplant does not require remission but requires the collaborative agreement amongst the doctors that Allistaire’s disease has responded enough to therapy to give the transplant a higher likelihood of success.  The third option is to have a cord blood transplant.  There is debate about whether or not cord blood transplants result in greater GVHD.  The two clear down sides to a cord blood transplant for Allistaire is that it absolutely requires strict remission and it would prevent her from being eligible for the modified T-cells developed in Dr. Greenburg’s lab, as that study requires a matched 10 out of 10 donor.

Yesterday I spent some time on the phone with Kira, the transplant insurance coordinator at SCCA (Seattle Cancer Care Alliance).  At the end of my meeting with Dr. Bleakley, she asked, “So your insurance is going to pay for this?”  Oh dear, I had not even thought of that.  I just assumed we were in the clear because of that awesome bill that was signed into law in 2013 prohibiting insurance companies in Montana from denying clinical trials to cancer patients.  Dr. Bleakley said that sometimes insurance companies with deny all clinical trials and sometimes they will allow Phase 2 trials but not Phase 1.  So a conversation with Kira was in order.  I was baffled and enraged when she told me that the insurance companies have found away to get around that law and can still deny any clinical trial they like.  “They would rather her be dead!”  I cried out.  Healthy is better than sick, but dead is all the better still.  Dead people don’t cost anything.  I asked her if they just deny clinical trials  outright and she said that they used to but that it’s not quite that bad anymore.  She encouraged me that she and her team are here to fight on Allistaire’s behalf and that like the insurance companies, they too have ways to get around the barricades the insurance companies throw up.  She described several different tacts they can take, one of which involved a 30 day appeal process.  “We don’t have 30 days!”  I yelled.  Fortunately, Kira said a number of the appeal processes can take just a matter of a few days.  So there is hope that we can get approval through insurance but the process cannot even begin until the doctors can say that Allistaire is actually in a position to have a transplant.

Bone marrow tests occur between day 28 and day 35 of a round of chemo and necessitates an ANC of 200 or higher.  There need to be enough cells present, indicating sufficient rebound of the marrow, to really determine how effective the chemo was.  Day 28 will be December 17th.  Bone marrow test results take about 48 hours but because she also needs PET/CT scan, we will likely get some telling results on the day of testing.

Every where I turn there are barricades to the road ahead.  At so many points, the door could be slammed shut on Allistaire’s life.  I know that no matter the number of road blocks or the seeming difficulty, nothing is hard with the Lord.  With His word He spoke the world into existence.  These seemingly insurmountable walls are like wee blades of grass to God.  I know He is able.  I don’t know however, what His plan is.  It is hard not to lose hope.  I spoke with a staff person at the hospital a while ago and I know I sounded like the downer because I continued to point out that her death is entirely possible.  The person responded that she and her coworkers could not do their jobs if they did not hope for life for her and so many like her.  Yes I hope for her life, but I cannot have the endpoint of my hope be in whether or not she lives.  My hope must, it must go beyond the grave.  The trajectory of my hope ends in God, it ends in the fulfillment of all He claims is true.  My hope rests in His promises that proclaim that all life is eternal, and life for those that love Him, are with Him for eternity and that He will redeem all things.  He promises that these sufferings will one day be shown to be “light and momentary,” and that they are “achieving for us an eternal glory that far outweighs them all.”  My hope enfolds the hope for her temporal life, and my temporal life, but it far exceeds these and strives on, yearning forward to eternal life, pure, abundant, eternal life with God where sickness and death are forever done away with and life incompressible rises up.

Sunday night, after we finished decorating the Christmas tree and put Solveig to bed, Sten and I sat in the light of the beautiful tree.  How many Christmases have we sat before the tree, the light reflected in purples, blue, pink and yellow?  Last year when I packed up the Christmas decorations, I wondered what this Christmas would hold.  I wonder now what next Christmas will be.  Sten and I sat and cried, heaves and silent sobs.  Every joy I have known with Allistaire, now sits tied and counter-balanced with cutting pain and sorrow.  We ate pancakes Saturday morning and Allistaire was not there.  She was not in the snow seeking just the right tree.  Solveig hung the ornaments that were Allistaire’s, carefully selected each year with the intent that one day she would have her own home, her own Christmas tree.  When the three deer crossed the snowy meadow, I could not call to Allistaire, to quick, get the binoculars.  She was not there.  Will the brightness of her eyes ever again cheer eagerly at the sight of animals in the field?

Being home was hard.  My imagination so honed.  But being with Solveig was wonderful.  When Solveig came out over Thanksgiving, the priority was for she and Sten to spend time with Allistaire.  At home, we had the joy of spending time together in ordinary ways.  It really was a full, wonderful four days.  On Friday, I took Solveig out of school early to get her flu shot and head over to The Coffee Pot, Solveig’s favorite lunch spot.  Then on to my favorite antique store and a few errands before we met up with Sten to go see Big Hero 6 all together.  The night finished up with burgers at Ale Works, another favorite of ours.  Yes, we settled down into the booth in the train car where we four have often sat.  There was an empty place at the table that threatened to steal the joy of the present, and clamp down sorrow.  But on we went.  Saturday we slept in and then had chocolate chip and apple pancakes.  We drove up past Bridger Bowl and used our $5 Forrest Service pass to get a happy little bright green pine tree.  I put away the Halloween decorations that have just sat unattended.  Later in the afternoon we went into to town where Main Street is closed off for the Christmas stroll.  This year it was nearly 60 degrees warmer than last year.  We enjoyed the artisans at SLAM fest and then a great dinner and show at our favorite venue, Peach Street Studios. It was a splendid day all around. On Sunday I had the joy of hiking the M with my friend Hope and talking over breakfast.  Lunch was with dear April and the unexpected conversation with Nate.  Sunday night we finished up the Christmas decorating.  The garland and trees, the light-up snowman for Allistaire’s room sit still in the dark boxes, hoping for use another year.  On my last day, I spent hours at breakfast with Pam, my dear, dear friend who knows best this hard road.  I could never have imagined the gift of her friendship.  We have committed to be there for one another.  We dream of our children being adults together, but come what may, we look forward to the hope of being gray haired old ladies together.  Jess and I, spent time and rejoiced at already having nearly 15 years of friendship.  Jess blessed me with tear filled green eyes and tales of missing me.  The afternoon wrapped up with an appointment with the social worker at the Bozeman Deaconness Cancer Center to explore options for counseling and then an all family get together at our house over pizza, salad and cherry crisp.

Solveig could be heard crying in her room after I put her to sleep.  Another leaving.  Unknown days.  A black wall of unknown past December 17th.  With trepidation I walked the hall to Allistaire’s room at the hospital, fearful of blood counts and possible blasts.  Rather, I was greeted with the sound of Allistaire’s laughter with Papa in the room while I talked with Kathy the nutritionist who says she has one and a half kilograms wiggle room with her weight before a feeding tube would need to be seriously considered.  Then Dr. Leary appeared for rounds with news that both her ANC and ABC (Absolute Blast Count) remain at zero.  Oh how I love, love, love that little girl.  I laughed out loud when I saw her very silly head, now far more bald with the exception of the fringe of wispy blonde hairs framing her face and neck.  What is hilarious is the spiky brown hairs in the back that stand with resolute determination to stake their claim to her cranium.  They look like the have no intention of going anywhere but maker her look so very silly.  She was full of joy and glee, drawing and coloring at her table.  On Wednesday night she had spiked a fever, which necessitated blood cultures and broad-spectrum antibiotics until they could determine the source of the infection.  When I left on Thursday, she was a feeble little child who wouldn’t eat and only wanted to lay in bed with warm packs on her tummy.  She has had constant diarrhea for the past few weeks and seems to have pain from cramping.  It was hard to leave her when all I wanted was to curl around her and bring comfort.  So it was exceptionally lovely to find her in much better spirits.

We are twenty-two days into this round and 14 days of zero ANC.  We wait.  I try to get as many calories in her as possible.  Oreo shakes have seemed to help that task a bit.  I don’t take it a day at a time.  There are windows of hours and moments that require the aid of the Lord.  I told Nate about manna.  Such a crazy tale, but really so beautiful.  The Lord provided manna for the Israelites in the desert for food.  But only for a day.  They could not save or horde the manna.  They had to trust the Lord that He would again provide for them the next day.  They had to put their hope in His faithfulness, His sincere love for them and His actual capacity to provide.  I eat the manna.  His mercies are new every morning.  Great is His faithfulness.

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IMG_1966 IMG_1975 IMG_1979 IMG_1982 IMG_1985 IMG_19863 Years ago, December 9, 2011:

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7 responses »

  1. Heavy heart reading this. Such a mixture of all emotions. Thinking of you guys during this unknown Christmas season. xx

  2. Dear Jai, Sten, Allistaire and Solveig,
    The news is hard to read, the pictures hard to look at…but interspersed in both are light and hope and humor. The haircut pics are really something. And I am sure it is minute by minute, not day by day sometimes. We are all here for you guys and so glad that you are getting to come home more often…Big hugs all around. Love, Robin O

  3. Dear Jai, we just finished reading your latest post. We hold you, Allistaire, Sten and Solveig in our hearts. We continue to pray for you. Love, Arnold and DonnaSue

  4. Dear Jai and family, You don’t know me but I was introduced to your story via a friend a while back. I want you to know that you are in my prayers and your posts inspired me to get swabbed and registered. I pray I am a match! I also met someone this week who is working on this amazing trial and send you the link as another reminder to stay hopeful of all the new research and developments taking place. Love and prayers, Jannicke T.

  5. Allistaire is beautiful beyond comparison. Just like all the other kiddos up there they teach us hair is but a silly earthly accessory. We know the significance is beyond that of appearance though and our hearts sit heavy with you. Jai… Sten, if you need anything please call even if it’s just too scream at the top of your lungs to someone. Breanna and I are here for you. Give that sweet angel a hung from us and everyone we know currently praying so hard for her.

  6. Jai, I am originally from Bozeman and have been following your story. I work in healthcare in Alaska and am framilier with Allistaire’s struggles as I have seen them with my own patients. Todays post inspired me to sign up for the bone marrow registery. It seems like an easy was to help out. Best wishes to your family.

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