Author Archives: Conglomeration of Joy

Mixed Results on CT

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IMG_8467How many times have I been verbally harassed about “just giving an update,” rather than waiting longer to give the fuller picture – ultimately, a picture I believe to be far richer and more significant than the “data.”  I’ve resisted this pressure to just state the facts for a long time, because in the end, the facts will not be what endures.  But, yes, tonight, I’m going to mostly just give you the briefest of updates.

Dr. Pollard and I, along with the collaboration for the SCCA docs, planned that the CT today would not only be a follow-up to the CT from a month ago to look at pulmonary nodules (fungus in the lungs), but would also look for recurrent disease.  The first week of June is when we will have to come back and do a whole series of tests for Allistaire’s one year post-transplant follow-up.  This would include, amongst other things, a bone marrow aspirate to look for disease in the marrow and a CT with oral and IV contrast to look for any disease elsewhere in the body.  Some may remember, that at the worst point, just before transplant, Allistaire had disease in 8 places outside of her marrow including her back, quite a few of her lymph nodes, the growth plates in her knees and her chest wall.  Rather than doing two CTs so close together, we decided to roll the two into one.  This was partially spurred on by my recent discovery that one CT can be equivalent in radiation to 250 X-rays.

Thankfully, today’s CT did not show any evidence of leukemia – such a relief!  Thank you Lord!

However, the CT today did show pulmonary nodules “too numerous to count,” and that those of larger, more notable size, had increased in size.  To add to the complexity of the picture, Allistaire’s eosinophil count, one of the white blood cells, has skyrocketed. The normal range is 0-400.  A week ago it was 4,500 and today it was 8,160.  The good news is that her other blood lines look totally normal (platelets 220, hematocrit 39.6 and ANC 5440).  The question is whether these two issues are related or separate.  When the high eosinophil count first showed up, it was decided that Allistaire would have an endoscopy to look in her esophagus and stomach to see what’s going on.  Eosinophilic gastritis, which is from what I’m told, essentially an allergic reaction, could be a possibility.  I was of course concerned about GVHD, but I am told that it is not typical for eosinophils to rise this high and fast due to GVHD.  A few other infectious options were ruled out with a stool sample done last week that was negative for all infections tested.  However, the stool sample did show presence of white blood cells which are indicative of inflammation somewhere in the body.

At this point, a number of tests must be conducted and results returned before we can really know what’s going on.  So here’s the plan, tomorrow morning (Tuesday) at 11am, Allistaire will get an endoscopy and a BAL (Bronchoalveolar lavage).  The endoscopy allows the doctors to get a visual of what’s going on inside her upper gut and to take tissue samples.  With the BAL, they will put fluid in her lungs and then remove it in order to then see if fungus grows and if so, what kind.  It is possible that she has a fungus that neither the voriconazole nor the new drug, posaconazole, has been able to target.  Dr. Gardner said it is possible that the eosinophils are on the rise as a result of trying to fight what’s going on in her lungs.  Then Wednesday, the poor sweet girl will have to have yet another IV placed (she absolutely hates this part) and at 11am have a lung biopsy conducted.  This should only be a needle biopsy so it will not be overly invasive, but she will have to be admitted to the hospital following the procedure for about 24 hours of observation to make sure she recovers fine.  Dr. Gardner originally wanted to admit her today, not because she is in any perceived imminent danger, but because it can just be easier and faster to get all the various teams of doctors in to see her.  While she is inpatient, the Infectious Disease team and Pulmonary team will come by to see her.  As you might imagine, I resisted pretty heartily the idea of being admitted.  Allistaire has literally never walked back into the Oncology Unit since the day she was discharged last July.  I have only been in once.  I DO NOT want to get trapped there again.

So, it will not be the most fun few days, but hey, there does not appear to be any evidence of disease outside of her marrow at this point, and for that I am overjoyed!  The parts that are not fun are getting poked for IV’s, not being able to eat or drink a lot in anticipation of anesthesia and of course, the possibility of getting stuck in the hospital.  Originally, this was hopefully going to be a one day in Seattle trip, but when do things just go perfect and smooth for us…uh, pretty much never.  I pray the Lord will give the doctors wisdom as we get test results back later in the week so that we can all be confident in the diagnosis of what’s going on and the best way to treat it.  If it is a different form of fungus, it’s possible they will need to give Allistaire IV anti-fungals.  I don’t know much about this other than it could very possibly require some sort of line (hopefully just a pic line) and months of treatment.  I am told it could be outpatient but I don’t know at what frequency or if it could be done in Montana or what.  So much is up in the air.

As sweet Dr. Gardner, relayed her thoughts and the plan she was trying to put into place, I said, “You know, Allistaire’s Make-A-Wish trip is coming up on May 18th.  I know that’s not the most important thing but….”  “No,” she said, “It is important.  She is going on her Make-A-Wish trip.”  You see, we’ve told almost no one about the trip because of the fear of just such a thing as this happening.  We haven’t told Allistaire or Solveig, because it would break our hearts to have to then take it away.  In the scope of all that matters in life, it feels trite to say that a trip to Disney World counts for much, but I think in our case, it is so much more than just a fun trip.  It is that tip of the iceberg sort of surface evidence of a much deeper and more massive reality.  I so want my sweet girls to explode with excitement and joy and just have the chance to be indulged in extravagant, childish delight.  “I’ll do whatever you think is best Dr. Gardner.  I will.  And I’m just really hoping somehow we can have this worked out so we can go on this trip.”  She totally understood and is working hard to care for both Allistaire’s flesh and her little spirit.

As Allistaire and I waited in the dining room of the cafeteria, finally eating our lunch, and waiting for when her 3:30pm clinic appointment, and thus CT results, would finally arrive, I was reminded that my life is not held in suspension.  My life does not begin with good CT results.  I can’t keep holding my breath, hoping all is well and we’ve made it through.  I can’t keep subconsciously waiting for my life to “get back on track.”  My life is now.  It is this moment -whatever that moment looks like – it is full and available for feasting upon, for gobbling up the manna of the present.  In the two hours we waited, I was repeatedly compelled to soak in the wonder of my daughter.  I sought to watch her face intently.  To note the details of her expression and the sound of her voice.  I stroked the incredibly soft skin of her wee little neck and hugged her small rib cage.  There was so much to partake of, so much bounty.  In this moment there was the enjoyment of my little girl without knowledge of disease and I knew that in a short period of time that could all change.  And I would love that girl too, that girl who might have lumps of leukemia hiding out in her flesh.  But right then, I simply had my sweet girl who has battled cancer.  There is no such thing as, “time to kill.”  Life is now.  There is no check list, real or imagined, that must be complete before we can get onto “real life.”  This time in Seattle isn’t how I’d like to be spending my time.  I have these goals in my mind, things I’ve had to set aside for over two years.  I am constantly tempted to evaluate my life in light of where I am at in terms of accomplishing those goals.  That will just leave me frustrated and dissatisfied.  Rather, I am striving and asking God to enable me to more and more be content, at rest, with exactly where I am.  This isn’t static rest though, this is an active pursuit of now and the fullness of now, the bounty that is right in front of my eyes.  This is a delighted acceptance of the gifts given to me today.  In my peripheral vision, I think I am seeing that this sort of living will amazingly result in a future bounty far greater than if I fix my eyes on accomplishing my goals.  Maybe it’s because my goals are so wee in contrast to the “goals,” God has for me.  I am too wee and too finite to see the grandeur and scale of God’s goals.  So He tells me, just look at what I’ve given you today.  Rejoice and be glad in it.  This is the day, this is the day, this is the day that the Lord has made.IMG_8471 IMG_8466 IMG_8460 IMG_8454

Let’s Obliteride – Again!

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IMG_9626When I was a student at the University of Washington, I took Chemistry for three glorious quarters.  I remember sitting on the edge of the wooden lecture hall seat, entranced as my professor pointed out that there would be no life on our planet if the water molecule, H2O, was not bent, but instead linear.  By being bent, the water molecule was polar and thus acted like a little magnet, sticking together with a whole bunch of other water molecules, allowing vast amounts of H2O to remain in liquid form.  Ah, the wonders of water.  I sat with mouth obnoxiously open, in awe that such a simple thing was the difference between life or no life on our planet.  Another day I ventured up to the fourth floor where the entire building seemed to shake with the vibration of exhaust hoods.  I peeked into tiny lab windows to see glass vials and beakers and strange glass labyrinths.  I salivated trying to take in the fantastic complexity of the Molecular Pathways poster in the hallway.

Petri dishes and slime molds, bunsen burners and little pins thrust into wax to hold open the chest cavity of a frog.  All sorts of strange images enter my mind when I think of scientific research.  I can see odd folks milling around in white lab coats, hunched over microscopes and clicking the keyboard to record data.

Here is another image.  Big blue beautiful eyes, wispy blonde curls of hair, a line of little white teeth set in a grin – dimple on the right, hands still chubby and small.  Then listen, hear that sweet, wee voice with wonder mingled in and the declaration that those same blue eyes have just now spied a red-winged black bird.

Research is what has saved Allistaire’s life, not just once, but over and over again.  You scrub the end of the line coming out of her chest with an alcohol wipe for 15 seconds and you let it dry for 15 seconds before you enter the line, because research has shown this is the most effective way at killing any bacteria that could  lead to a line infection which could lead to serious illness or even death.  Cytarabine, fludarabine, mitoxantrone, daunorubacin, decitabine, busulfan, clofarabine, azacitadine – super weird words, absolutely yes, but also crazy amazing discoveries from plants and sea life and dirt that eventually were shown to be effective against that wretched killer, Acute Myeloid Leukemia.  But how much do you give and how long and in combination with what other drugs?  Is one round of chemo enough or should we risk burdening that little heart pumping blood again in hopes that the cancer is really, really gone this time?  And what of her liver and kidneys and the other parts of her flesh she needs to keep her alive, how do we protect those and kill the killer?

Research may seem abstract.  I mean really, even cancer seems abstract.  What is it anyway?  Most of the time you can’t see it, so how can you really die from it?  I’ve seen cancer.  Cancer is when your child sleeps 20 hours a day and turns ghost white because almost all of her red blood cells have vanished and been replaced by the insatiable multiplication of cancer cells.  Cancer is a boy’s face warped and deformed from the massive pressure of neuroblastoma tumors pressing against the skin.  Cancer is the girl in the wheelchair, unable to walk because both legs have been sawed off – a gruesome trade to try to save her life.  Cancer is that person you hear is a teenage girl but you can’t tell because she has wasted away and her features have become featureless, her skin covered in a barrage of sores and bruises.

Research takes that white, lethargic little girl, unwilling to walk, and turns her into a feisty force to be reckoned with as she whirls around the Oncology Unit on a bike and grows old enough to carry on a conversation with you and play school with her big sister.  Research discovers that you can kill those horrifying neuroblastoma cells with re-engineered T-cells from the child’s own body.  Research allows the loss of legs to be a worthy trade-off because the spirit of that girl shines bright in her eyes and her smile beams as she races down the sidewalk, gloved hands on wheels.  Research is what gives the mom who lost her daughter, hope that more girls will be able to go to their prom and graduate from high school.  I have seen research – giving life and breath to faces held dear, no longer abstract but vividly tangible.

Research is what I’m asking you to consider giving your money to, because really, I’m asking you to give countless people a better chance at living .  It may be your child.  It may be the shocking news on your anniversary that your beloved wife has cancer.  It may be your father gone far too soon.  It may be you – you who have joys and plans and hopes for a life long-lived.

It has almost been one year since I sat at the conference table across from Dr. Dahlberg, trying to hold back the tears as she explained that Allistaire had less than a 10% chance at survival and that in ordinary circumstances there would be nothing left to offer her.  It could have been as simple and unfathomably monumental as it being time to take her home to die.  But there it was, Clinical Trial 7617A – an open door, a chance at life, a gift that would cost $1,100,000 and ultimately, sustained Allistaire’s life.  The tears were hot from terror and streamed down a face full of joy and smile.

Fred Hutchinson Cancer Research Center decided to invest in a study that would look at the effectiveness of the anti-leukemic effects of combining the chemotherapies, Busulfan and Clofarabine.  The study had only opened about a month prior and would end up closing not very many months later.  Allistaire’s transplant succeeded in two major ways.  It cleared all of the detectable leukemia from her marrow and in so doing made way for the wondrous mysteries of someone else’s immune system to enter into her body and begin a gorgeously complex fight against her foreign cancer cells.  When tiny traces of cancer was found in August, it was the team of doctors at Fred Hutch who fight adult AML that were able to recommend a chemotherapy that had potential to fight back the cancer while Allistaire’s new donor cells could fully mature and mobilize against the few remaining cancer cells.

On August 9th, 2013, I was told that because there was still cancer after her transplant, Allistaire had a 5% chance or less to survive and more than likely, would live no more than 6 more months.  Of course, that was based on the most current data.  You see, giving someone a bone marrow transplant without being in remission, had almost never, ever been done.  This was new territory.  This was a landscape in which there weren’t statistics to color the details.  Anything was possible.  Why?  Because of research.  Because people like you, can give money to fund the most amazing and promising research you can imagine.

Actually, most of us can’t imagine it, because it is simply too complex and amazing.  But there are teams of doctors at Fred Hutchinson Cancer Research Center who spend all day long, every day, trying to imagine the possibilities and then put them into action.  And these are not just socially awkward folks who sit in a lab all day long.  There are probably those and thanks be to God for them, but they are also the doctors who have morning after morning bent down in Allistaire’s hospital room and joked with her and cared for her while also attending to the details of her flesh.  These are fellow moms and dads who cherish their own children and who allow that love to fuel their passion to keep pursuing cures for cancer.

On the morning of August 10th, 2013, the day after the very worst news of my life, I got on my old crusty, 1995 mountain bike and rode 25 miles in Obliteride.  Obliteride is a bike ride put on to raise funds for Fred Hutchinson Cancer Research Center, 100% of which goes directly to cancer research.  I road with my dear friend, Emily Vahey on one side and my sweet, sweet sister-in-law, Jo on the other.  It was quite an incredible experience to gather with hundreds of other people and ride for the people we love, known and unknown.  Together, the three of us raised about $13,000.  All in all the ride raised $1.9 million dollars for cancer research.  Though my eyes still bore the marks of hard crying the night before, it was a day also of joy and hope for what can be accomplished when people rally together for good – for the hope of a day when the monster, cancer, will be defanged.

Thank you SO much to each of you who so generously gave last year to Obliteride.  For some of you it was a tangible way to show Allistaire and our family love.  For others, it was a way to give thanks for your own lives spared because of the virtues of cancer research.  And for yet others, it was a memorial for someone dear to you already lost.  For one woman, it was her way of loving her grandchildren, a way to give them a better chance at life in the future.

Giving money to Obliteride to further the cancer research at Fred Hutch is a tangible way to love.  Yes, it is beakers and strange whirring machines, but it is also that sweet little goofy face in front of you, it is your mom’s face and your own.

This year I will be riding the 50-mile route which goes across beautiful Lake Washington and have made a commitment to raise at least $1,250.  My dear friends Emily Vahey, Lysen Storaasli and sister-in-law, Jonell Anderson are also riding with me and have made the same fundraising commitment.  So if you know me through one of these fantastic women folk, please donate directly to Obliteride under their name and help them reach their goal.  If you would like to support me in Obliteride and help OBLITERATE CANCER, click on the blue link below:

Help Jai Obliterate Cancer!

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Ephraim

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IMG_8351_croppedWith 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.”

 

IMG_7719 IMG_7717 IMG_7730 IMG_7733 IMG_7752 IMG_7768 IMG_7795 IMG_7796 IMG_7818 IMG_7824 IMG_7831 IMG_7848 IMG_7850 IMG_7853 IMG_7856 IMG_7882 IMG_7887 IMG_7889 IMG_7897 IMG_7898 IMG_7955 IMG_7963 IMG_7972 IMG_7973 IMG_7988 IMG_0350 IMG_0351 IMG_0353-2 IMG_0354 IMG_0355 IMG_0358 IMG_0359 photo 2-14photo 1-16 photo 2-16 photo 3-12 IMG_0385 IMG_8012 IMG_8014 IMG_8018 IMG_8024 IMG_8031 IMG_8054 IMG_8059 IMG_8068 IMG_8069 IMG_8099 IMG_8104 IMG_8110 IMG_8119 IMG_8125 IMG_8135 IMG_8136 IMG_8140 IMG_8159 IMG_8161 IMG_8162 IMG_8163 IMG_8176 IMG_8189 IMG_8222 IMG_8346 IMG_8226 IMG_4619 IMG_4459 IMG_4486 IMG_4502 IMG_4508 IMG_4546 IMG_4548 IMG_4550 IMG_4597Here’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.IMG_1962IMG_1970IMG_1986IMG_1997IMG_2003

And here was life two Aprils ago in 2012

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Tilting Earth

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IMG_7470They call it the cold smoke.  The snow so fine it floats on the currents of air, swirling, aloft.  The drive down Bridger this morning was more treacherous than it seemed it should have been.  The plows were not yet out and the cars in front of me were invisible in the swirl of the snow, only intermittent glimpses of brake lights.  Despite being sick, I was drawn out into the morning’s weak light for some quiet hours to try to put into words the last month.  Of course the thought of a scone and breakfast sandwich at Wild Crumb was a pretty strong draw as well.

So here I sit with a cup of coffee and a huckleberry scone with the perfect crisp sugary outside and delightful taste of summer inside.  The truth is I am still surprised to be here.  When I tucked Solveig into bed on Saturday night, January 21st, I told her I hoped I would be back in a week and a half.  But I told her I didn’t know.  I really didn’t know.  Sometimes Seattle feels like quicksand, you can so quickly become entrapped, unable to struggle free.  For the sixteenth time they would plunge the needle into her bone, in that purple dent on her right lower back, looking again for those cells that never cease to threaten.  Her hematocrit had been dropping, down around 34, the lowest I had ever seen since prior to transplant.  I feared relapse.  But you know, it wasn’t just an unsettlingly low hematocrit, it was God, He was preparing me and I didn’t like it.  On more than one occasion I wanted to tell Him to knock it off; He was freaking me out.

Only a week and half from today, it will have been a year since that day that is branded into my heart.  On that snowy Wednesday nearly a year ago we received word from Dr. Gardner in Seattle that the lump in Allistaire’s back was indeed leukemia cells and that we needed to get to Seattle as quickly as possible.  With face swollen from inexpressible sorrow and tears, I tried to answer my sister-in-law Jess.  She asked how long we would be gone.  “Six months, a year, I don’t know.”  In that moment I could never have imagined the ragged path that would stretch out into the year ahead of us.  I knew that in the best case scenario it would be six months, but I knew enough to know that plenty of terror could truncate that time into mere months or stretch it out into the realm of years.  And so in some strange way, as the world tilts again to February, to the time when one begins to weary of snow and cold, and yearn for the breaking of winter into spring, I found  my life repeating in strangely eerie ways.

Everywhere white.  Snow boots everyday and the time-lapse between icy breath in the car to the blasting of heat.  We meet at the end of the driveway at 5:15am and don our headlamps as we head up the side of the Bridger foothills, to that great white “M” fashioned on the face of the mountain.  My friend, Hope, and I head out into the dark to fight back the weight that seeks to settle on our surfaces and to be in the presence of the dark land and to be in one another’s presence.  We did the same a year ago.  We had barely begun our pattern of exertion when I was swept away with Allistaire.  We had barely begun to pick up where we left off when it was time again to head west to Seattle, uncertain of my return.  On those hikes up the hill a year ago, I told Hope about how God seemed to be preparing my heart for the realization of my greatest fear.  In His mercy He allowed me to sense the swallowing, suffocating darkness of possible relapse and told me in the clearest of ways, that repeated refrain, that He was there, in the darkness.  Come what may, He would be with me.  He would never leave me or forsake me.  And more – He audaciously promised to turn darkness into light.  I repeated His words to Hope on those dark mornings with head bent down, watching only the circle of light in front of my steps.  As so it was again, I recounted His grace to me, how He seemed so relentlessly at work in my heart those few weeks before we were to go back to Seattle.

How much of who we are could be better understood as a reaction to some unseen circumstance, some reality that seems questionable only because it dwells in the past but whose weight presses into us like a mold into clay.  As others encounter our surfaces, those forces that cut us, that exerted against our spirits, those days and moments and faces that softened and hardened us, are unseen.  We are often left to see one another only by what is readily visible.  And without exactly saying so, I have been asked why I rush to relapse.  Why do I sprint toward darkness and woe?  Brandon hit the floor, dead at 18, in the middle of brushing his teeth.  This tall, lanky tan kid who ran 20 miles before breakfast, passed from vitality to extinguished life in a breath of a moment.  As Sten and I disembarked the plane from our honeymoon, the gaunt face of his mom unexpectedly greeted us.  Matt was dead, killed in a car accident just days before.  I remembered standing next to Matt almost exactly a year before that, hearing that his friend Natalie, had been killed in a bus accident in Africa.  We could not have guessed that we would be hearing like news of Matt not long later.  These two were the first of an unwieldy number of lives lost too young.

As a kid growing up, I watched the wreck of relationships caused by grudges held to fiercely over the years.  Somewhere burrowed deep in me grew the resignation that I would do my best to never, ever let the sun go down on my anger.  I willed to never let division whittle its way into my heart, severing me from those I held dear. And as I faced the brevity of life, I willed to soak in life, to taste and see and hear and speak.  I determined to speak out loud what needed to be said, to tell those I love, that I love them now, never assuming there would be more time.  I began the habit of intense observation.  With eager forward bent, I sought to observe the light on trees, the silhouettes of swallows and bats at night, the sounds of voices, the details of ears and expressions.  I was determined to not miss what might soon be lost.  Any moment could be that last moment, the unexpected, seemingly trivial moment that could swell to significance were it be the last of something dear.  Some would call that morbid, but I saw it as becoming enriched, of taking into myself the beauty and delight of the life that is.  What if I had rushed passed those details, absurdly assuming they would always be there for the taking?  What if I didn’t speak and the opportunity was lost?  I so very much wanted, and want to live a life without regrets.  Perhaps too it is Thoreau’s fault, he who said he wanted to live deeply and suck out all the marrow of life, who when he came to die, did not want to discover he had not lived.  His words resound in me.

And then there was my deceit, my lying ways.  I was a liar of a child, a manipulator and even a petty thief.  After getting caught in 9th grade for stealing a sticker worth a mere dollar, I was shocked into considering the person I was becoming.  I was ironically on an Honor Society field trip to the Puyallup Fair and ridiculously decided to steal something I could easily afford to buy.  On that odd day, something turned inside me and I determined not to lie any more, to never steal again.  In the years that followed, my personal choice to be honest grew more weighty and filled out, such that I began to discover that I was strangely empowered when I had nothing to hide.  When I chose to walk through life exposed and vulnerable, I began to see that I need not fear people discovering something dark I was trying to hide.  I enjoyed the sense of lightness in my step when I was less burdened with the fear.  When I pulled my darkness into the light, it lost some of its power and what’s more, then it could be examined, explored and dealt with.  The thing about being honest and vulnerable though, is you are open to assault, you are unprotected, unshielded.  When the blade comes at you, it simply buries into your flesh, it is not deflected.  But here too, the Lord revealed to be a mystery beautiful.  He would heal me, He would bind me up.  He does not promise a life free from pain and hurt, free from the stinging pain of being wounded even by those you love, but He promises to carry me, to bind my wounds.  And He promises forgiveness when I am the one wounding, lacerating.

All of these mosaic bits of color and light and dark, bring me to this place of willing to look my greatest fear straight on.  I turn again and again to this darkness, this fear, this overwhelming mountain of doom that threatens to swallow my life, because I seek to wrestle.  I know too many dead kids and can imagine too easily those last moments, the last time to say goodnight or the last giddy run across the living room or grass, to pretend that relapse, and more significantly, the death that is so often tethered to it, is not utterly real and possible.  I suppose there is an element of wanting control, of not wanting to be knocked down in surprise when the board slams into my skull, or the knife again slips hot between my ribs.  I know rationally that I can never, ever be prepared sufficiently for such a blow.  Allistaire’s death would without a doubt knock the wind out of me.  I would surely find myself crumpled on the floor.  So why do I keep turning toward it, willing myself to look my greatest fear in the eye.  Yes, there is loss when I choose to do so.  There is a way in which giving attention to an unknown, and only merely possible, not certain outcome, is waste, waste of present energy, waste of present joy.  I have certainly known many a day, eroded away by fear and anxiousness and sorrow.  I know my eyes have too many times glazed over with tears as I watch Solveig and Allistaire dance, wondering if it is the last time.  Countless nights, hot tears have slid down my cheeks as I lay in the darkness next to Allistaire, wondering how many more nights I have with her.  Yes, my choice to face the darkness has too often in turn stolen away life, life that didn’t need to be lost.  Ironically, in my yearning to take hold of life, I have let too much of it slip from me.

So there is loss, but, there is also gain, gain of a different sort.  For when I turn toward that darkness, I am also turning, turning toward the Lord, choosing and willing and determining to look Him in the face.  Because that is really what this is all about.  Cause the thing is, He is the One doing this.  He is the One determining all the days of my life before one of them comes to be.  In a flash, He could bring this to an end.  In a flash He could dissolve every and any cancer cell that still dwells in my child’s flesh.  The thing is, He has set me on this path and it is ultimately He that I wrestle.  I peer around at this terrifying land He has placed me in and I am repeatedly confronted with the question of is He good, can I really, really trust Him?  He stopped the life of that child that had begun to grow inside me.  He put an end to that life and made way for the life of Allistaire.  He knew what He was doing when He made her and He could have changed the course a thousand times, but this is where He has directed me.  The question I face over and over  is whether I will yield to Him and learn more and more what it is to truly rest in Him.  It’s pretty easy to walk through life, all beautiful and light and bursting with abundance, the Lord by your side.  But what of those darker days when He is ahead of you, stretching out His hand, beckoning you to come take His hand down a road where you can see nothing, nothing but your feet in front of you, where all around the blackness is thick with cold.  Your finite mind cannot grasp onto one good reason to walk into that black.  Your whole gut is in revolt and demands that your turn and flee.  You are pretty sure there is nothing good down that path, you can only imagine destruction in fine detail and sweeping, broad blows.

Like a contortionist, I strive to bend low and attend to the gritty details of blood counts and rashes and the nuance of appetite and energy levels while simultaneously fixing all my gaze above, on my beloved Christ who spans all of time and place and circumstance.  I grasp my side where the ache is still so tender from deep searing wounds and I gasp as I imagine wounds still to come, blows that threaten to take my breath and swallow my life.  But as I said, that God, that relentless God that won’t let me go, that God who formed me in my mother’s womb and who chose me in Him before the foundations of the earth, He is patient to wrestle with me, and continues to form my heart.  I cannot say that He has taught me something new this past month.  He has not pulled back the veil to reveal more.  I can only describe it as having the sensation of being suspended.  Somehow He is deepening my rest in His Word, in His promises, in His declarations of how and what this life really is and in so doing, He has moved me forward in Him by enabling me to dwell more in the present.  That doesn’t seem so profound.  How many times has the mantra, “take it one day at a time,” been repeated as though the simplicity of the statement means it is simple to do.  Never have I found something so hard as to dwell in the day, in the present.  It feels so often as though it is up to me to press on those towering walls of water, the weight of the past set up against the immensity of the future, both threatening to collapse down on me, crushing me like the Egyptians in the Red Sea.  But here, the Lord has made this strange space, this open land between the past and the future.  He is forming for me a way through, a way of refuge on dry land.

I somehow feel more aloft.  A little less fettered.  A little less burdened.  A little more buoyed up in Him.  A little more content to trust that He holds the weightiness of my past and my future.  Those walls of dark water rise up on either side and I can feel the energy and rush of their cold spray, and yet mysteriously, here I am, in the middle, right between the already and the not yet, right between grace past and grace to come, delighting in grace now, grace present.  I couldn’t even bring myself to make plans in Seattle for anything past Tuesday afternoon, when Dr. Gardner would call with results.  I knew that the whole landscape of my life could shift and break once again just as it did those few years ago when the continental plate repositioned 14 feet, causing the tsunami in Japan of terrifying proportions.  I had already been swept away once, it did not seem outlandish that it could happen again, especially as the details of life repeated, repetition from a year ago.  I asked the Lord to help me just enjoy the days that led up to our departure, just let me soak them up, not with morbid preoccupation that they may be last days, but form in me a new pattern, a new way of dwelling in the present, of delighting in the now that does not require loss to illuminate value.  And He answered that prayer.  As I pulled out Allistaire’s piggy jammies from the drawer that Saturday night, I found my mind drifting toward the question of would she again sleep in this room.  So I asked the Lord again to come to my aid.  I turned my eyes to Allistaire and fixed on delighting in her form and the childish, adorable lilt of her voice.  As the girls danced that night to crazy, hard-core music, I  sat with contented smile on the couch, tucked in Sten’s arm.  What a life I have, what gift, and I am consuming it, taking it into me not like last rations, but like manna, like nourishment for the day.

Sometimes walking with the Lord really is like wrestling and you can barely get your breath.  He seemed to just not let up, so continuous was His work in my heart in those two weeks before our return to Seattle.  I was thankful but it also seemed like relapse was ineveitable, simply because of how much He seemed to be accomplishing in my heart.  Again, I resolved to not live with dread that Monday and Tuesday but to attend to the details of the day, taking delight wherever I could.  We arrived at the hospital at 9am on Monday, January 23rd so that Allistaire could drink the giant cup of apple juice with the contrast in it, in preparation for the cat scan to come.  For someone Allistaire’s age, they automatically schedule anesthesia for the cat scan, not assuming a nearly 4 year old can stay still for the 3o seconds it takes to form the image.  But I was pretty sure she could do it – she did well in September the last time she had a CT and I hoped to avoid a day with two sedations.  They velcroed her in like a little papoose and she did a fabulous job of staying still.  Labs were then drawn and we had about an hour to wait before we would meet with Dr. Gardner.  Allistaire had no problem passing the hour glued to her iPad, and I had a great book, “Wednesdays Were Pretty Normal,” written by a dad whose son had ALL, the more common form of childhood leukemia.  You might think that reading about a kid with cancer wouldn’t be the best distraction as we waited for CT results, but in fact, reading of the father’s pursuit of the Lord was exactly the sort of spurring on that made those 60 plus minutes a restful yielding.  My hands only grew clammy as we honed in on the 10 minute mark before we would see Dr. Gardner.  When we were in the exam room with vitals already taken, I was alert to the door opening and taking that first look at Dr. Gardner’s face, like looking at tea leaves to portend the future.  Doctors, they drive me crazy sometimes, don’t ask me how I am, I don’t want to chit-chat…how did the CT look?  “Oh it’s good, it’s good, every things clear, ” she says like this the only reasonable outcome.  “And her labs are good too.”  I look and still see that blasted hematocrit of 34.9 that I was so hoping would be have risen.  But, it’s steady and the CT is good, maybe it’ll be okay, maybe the bone marrow will be good, maybe.  Thank you God.  Thank you, thank you, thank you.  The only bomb of the appointment is that doctors had discussed Allistaire’s case and decided they wanted her to do yet one more round of chemo.  This was scheduled to be her last but they want 6 rounds post remission which would result in a total of 7 rounds of Azacitadine.  It’s all a guessing game really and what they decide is based almost exclusively on what has been done in adults as very few children have ever been given this chemo, this mysterious substance that somehow changes the DNA of the cancer cells making them more identifiable to the body’s own immune system for destruction.  One more round of chemo?  I’m not going to argue, bring it, let’s do what we have to do to knock that junk down for good!

The long day continued with a 45 minute delay past the scheduled bone marrow aspirate, but at last we were there once again, taking up our familiar positions, Allistaire lying still unconscious in the bed they wheel into the recovery room and I in the adjacent chair, taking the odd picture of my child whose just had her bone plumbed.  If you’re wondering why Allistaire wears the same outfit in so many pictures, the one with the fantastic purple plants and the outlandish coral flowers, it’s because this is her weigh-in outfit.  Every single time she gets weighed she is wearing the same sweater, pants and socks.  I don’t want to have to wonder if her weight is being impacted by the bulk or lack there of her clothing.  So it was Monday, weigh-in day in Seattle and she had only dropped .2 kilograms and here she was again, for the 16th time, waking up from anesthesia after having a bone marrow test.

Recovery room is a bit of a misnomer as you pretty much get kicked to the curb the moment your kid is conscious and their vitals are determined to be stable.  There really is no recovering, no, you as the parent are kicked out the door with a kid crazed from anesthesia.  It’s not my favorite, at all.  On this day, however, we were simply moved to another room where we were to wait for Dr. Carepenter, the SCCA GVHD guru doctor to come see Allistaire.  We’ve only been able to see him once, way back in September and are supposed to see him every 6 weeks but between his schedule and ours it hadn’t worked to see him again until this visit.  He was currently the inpatient attending bone marrow doctor and was making an exception to come see us in clinic since we were technically in the same building.  She was in her crazed post-ansesthesia, haven’t eaten or drank all day and I need a nap real bad state.  Not probably the best time to examine Allistaire but this was our only window of opportunity with Dr. Carpenter.  He did his best to evaluate her and felt like she looked like she was doing well with no evidence of GVHD.  He approved the taper of her prednisone, which if all goes well, would be complete in 6-7 weeks.  At that point she would no longer be on any immune-suppressants which would be SO awesome.  We want her off those steroids both because of their awful side effects on the body and because we don’t want to dampen her own immune system from maximizing its fight against any remaining cancer cells.  Other than a flaring of GVHD, the only other possible concern about this taper is that as we near the dose that equals the amount of steroid her body’s own adrenal glands are supposed to make, we could see GVHD-like symptoms that may in fact be a result of her adrenal glands being tired and not “awake.”  Because her body has been being supplied steroids orally in the form of prednisone, her body has not had to rely on it’s own ability of the adrenal glands to produce the body’s natural steroid.  Should this become the case, they would prescribe a different steroid, hydrocortisone, to supplement while her adrenals wake up.

Our appointments Monday finally wrapped up and all we had to do was wait until late Tuesday afternoon to hear from Dr. Gardner about the Flow Cytometry results from her bone marrow aspirate.  There would still be chimerism, morphology and cytogenetic results that would take longer to come back, but the Flow is considered to be the most sensitive and definitive test.  Again the Lord sustained us throughout the day and I amazingly and genuinely felt at rest, knowing my Father who spoke the world into being, who determines every atom in existence, who knows all the days ordained for me, the God who turns darkness into light, He was the One who would really being revealing the next step in our journey that day.  I won’t lie though, twice Dr. Gardner gave us the worst news.  On that Tuesday afternoon, with glib delight in her voice, she called with the news that the first pathologist who reviewed the results of the Flow Cytometry was “very confident,” that there were no detectable cancer cells.  Of course, protocol required a second pathologist to review and confirm results.  Dr. Gardner agreed to call back when the final report had been made.  Not even a half and hour later, she reported again the absolutely glorious wondrous news that my little sweet girl was devoid of any cancer based on the very best of man’s technology’s ability to detect.  I could hardly believe our good fortune and God’s mercy was again made manifest in the tangible flesh of our little girl.

Can I tell you how delighted I was to take Allistaire to the hospital Wednesday morning, January 29th for her sixth round of this chemo?  Oh how I relished in seeing that fatty syringe of chemo locked into the pump and line going down, connecting to that line burrowed into her neck, the pulse of her heart blasting it into all the veins throughout her body.  Yeah chemo!  Sometimes you want chemo, sometimes chemo is gift upon gift.  In our appointment with Dr. Gardner on Monday, she had marveled at how well Allistaire’s body has held up under all this relentless assault.  Her liver, kidney’s, and lungs have done remarkably well.  They remain healthy as much as we can tell.  Even her heart, weakened by the chemo from her first bulk of treatment, continues be only minority effected.  And to add gift to gift, Dr. Garder, with twinkle in her eye, suggested we plan to have Allistaire’s line removed at the end of her next round of chemo.  What?  Oddly, it all seemed so fast, this year stretched out so, so long could actually, maybe coming to an end?  Allistaire is scheduled to return to Seattle and begin her last round of chemo on February 24th and have her line pulled on Tuesday, March 4th.  We would be home on the 5th, the day before her 4th birthday, a day I really didn’t know if I would ever see.  I rejoiced in all this amazing news, but held out a bit in my heart, wanting to get those last results.  And then one by one they came back, “in morphologic remission, ” 100% donor cells in her whole marrow chimerism test and no evidence of the MLL rearrangement by cytogenetics or FISH.  I look forward with bewildered joy that the end of her treatment is actually in sight.  It is actually just less than a month away. Inconceivable.

Life in this war-torn land has left me a little jumpy though.  I live today, taking in the joy of today’s abundance, but as always, I don’t count on “good” results tomorrow.  The tentativeness of our life was once again affirmed the very next day.  Thursday evening Allistaire threw up twice at our friends house.  This was unusual for her and didn’t fit her typical pattern of chemo-induced nausea.  By Friday morning, she had thrown up twenty times.  I lay beside her all night, helping her to get it all in the little crescent-shaped mauve bowl, holding her from behind as her body convulsed and retched, rotating the blankets when she didn’t make it to the bowl quick enough.  Sometimes we had a 10 minute lull, sometimes as much as 45 minutes in between.  I tried to get her to drink as much as I could, knowing how swiftly she could become dehydrated.  A few hours before we were scheduled to come in for chemo, I called the HemOnc fellow on call and asked for fluids.  It was our old friend, Urmilla who has known us from the beginning.  She was on it.  She would order fluids and have the on-call doc in clinic take a look at her.  By 8am the vomiting had finally stopped, though we had barely slept.  I reported two large diarrhea diapers as well to the doctor.  As the doctor lifted her head that morning from examining her, she asked if Allistaire’s liver was always that large.  What?  It’s never been enlarged as far as I knew.  My only comfort was knowing it couldn’t be cancer, so recent were her good results.  The doctor order blood cultures, labs, chemo to be held and scheduled an ultrasound.  She feared a possible clot in her liver given all her meds that increase risk of clots.  She wanted to admit Allistaire so she could be “followed.”  Oh no – I did NOT want to go back there – Allistaire had not been up to the 7th floor oncology unit since she was discharged after transplant in July.  I asked if we could please, please wait for some test results.  Antibiotics were given along with an IV dose of hydrocortisone to help with the stress of her illness.  A stool sample was taken.

Then just as suddenly, the world tilted back to normal.  Our sudden rush down was replaced with release.  Her labs were fine and upon a second examination, Allistaire’s liver felt pretty normal.  Perhaps it had felt so large because Allistaire had been laying on her side, the doctor explained.  Well good grief, I would sort of expect the doctor to have noted that possibility.  But what can you say, when seeming disaster has been avoided, the only real response is relief and thanks.  Allistaire slept through it all, so exhausted from the night before.  So we went  back to the house, she slept, I got just enough food into her that I could give her meds without upsetting her tummy again.  That night we ended up in the ER for several hours due to a fever of 102.8 for vitals, more blood cultures and a nasal swab.  Quite remarkably, this was the very first and only time Allistaire has ever had to go to the ER for a fever since she was first diagnosed.  This is virtually unheard of, so I felt we were due and I really couldn’t complain, despite being so fatigued.  Before we left, we got back results from the nasal swab that Allistaire was positive for enterovirus which likely explained the bought of vomiting 24 hours before.  Saturday afternoon, results of the stool sample came back positive for C-Diff, a nasty “gram-positive spore forming bacteria,” that causes horrific abdominal cramping and spectacular amounts of diarrhea.  Up until that point Allistaire had only had minimal diarrhea the past few days, but it was as if those test results signaled the onset of amped up symptoms.  The poor girl was just a wreck.  She felt miserable.  She was nauseous from chemo, in significant pain from the abdominal cramps, didn’t want to eat anything for days, was utterly fatigued and had me putting on the pressure to get food in so that I could get in all the meds that require food in the tummy, all the while knowing her weight was plummeting. It really was almost the sickest I’ve seen Allistaire.  She was unbelievably grumpy for so many days.

The remaining days of chemo were rough and just days to get through.  The one highlight, other than of course the glorious test results, was the joy-yelling of watching the Superbowl with my parents.  I don’t give a rip about football, but man, you could not help but be giddy.  For days and days before the Superbowl, the entire city of Seattle was blanketed in blue and green and sheer energetic, zeal and hope.  And then, wow, I don’t care who you are, you HAD to love that game, well I guess unless you’re one of those sad, so sad Bronco fans.  Let’s just say, it was a good day to be in Seattle on Monday, February 3rd.  The air was alive everywhere you went with collective delight combined with a bit of shock that the Hawks and the 12th Man did it!  They really won.  It was fun to say the least.

Another Monday brought another clinic appointment and another weigh-in.  Allistaire’s hematocrit had dropped to 32.6 but was no longer accompanied with an automatic fear of relapse.  Her weight dropped almost a kilogram, from 16.4 to 15.5.  The doc assumed at least half a kilo was probably water-weight loss and the other half due to not eating for so many days.  She was not concerned as the weigh loss could be easily explained but said we would need to watch her carefully.  Oh but wait, I exclaimed, I forgot to dress her in her weigh-in outfit.  I determined to get another weight the next day in the proper outfit.  Tuesday brought the last day of chemo, and extra fatty dose of fluids with some added electrolytes because her phosphorus and potassium had gotten so low from all the diarrhea.  The fluids only succeeded in bumping them up slightly so I was instructed to give her supplements on the drive home the next day.  Prior to fluids she weighted a nice 16.2 kgs.  I’m not sure how that happened because I wouldn’t have guessed the sweater and pants weighed that much more than the shirt and skirt she had worn the day before, but I was never-the-less pleased.  I’ve heard of kids stuffing things in their pockets for weigh-in, knowing a feeding tube was imminent if they didn’t make their weight.  I get that.  Many how tempting to keep a big, wet diaper on her for weigh-in.  Tempting.

In the early hours of Wednesday morning, February 5th, Allistaire and I began our journey east.  The sky was just barely beginning to betray the impending morning as we drove over the floating 522 bridge.  As we ascended Snoqualmie Pass, the light illuminated a world everywhere covered in the glory of white snow.  How did God know just how beautiful that creation would be?  How the contrast of white against the dark of evergreens and rock would thrill our spirits?  The pink wash descended on the white peaks in my rear view mirrors and I did my best to multi-task driving I-90 with as many glimpses of the Stewart range spread wide in the spectacular beauty of pure snow with sheer pink morning light overlaid.  On and on we drove through endlessly beautiful sights, all skies blue and roads bare.  From near light to end light I drove, and Allistaire slept.

I marveled that the season had so shifted that I arrived home at dusk, a time as beautiful and other-worldly as dawn.  The four of us went to bed on an exceptionally cold night, but in our own beds.  I marveled that God had once again brought us home.  Thank you Father.  There will never be words sufficient to thank you for all that you have done.  Perhaps that is part of why we need eternity, eternity to marvel at all that you have done, for all your beauty, all you mercy, all your gentle kindness through times of light and dark.

“It is not possible for us to know each other except as we manifest ourselves in distorted shadows to the eyes of others. We do not even know ourselves; therefore, why should we judge a neighbor? Who knows what pain is behind virtue and what fear behind vice? No one, in short, knows what makes a man,and only God knows his thoughts, his joys, his bitternesses, his agony, the injustices committed against him and the injustices he commits.
…God is too inscrutable for our little understanding. After sad meditation it comes to me that all our lives, whether good or in error, mournful or joyous, obscure or of gilded reputation, painful or happy, is only a prologue to love beyond the grave, where all is understood and almost all forgiven.”     – SenecaIMG_7276 IMG_7293 IMG_7304 IMG_7319 IMG_7324 IMG_7346 IMG_7383 IMG_7385 IMG_7393 IMG_7415 IMG_7422 IMG_7428 IMG_7440 IMG_7446 IMG_7449 IMG_7456 IMG_7471 IMG_7473 IMG_7474 IMG_7476 IMG_7482 IMG_7486 IMG_7504

Yes and Amen

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IMG_1868I hucked the Christmas tree out the door this afternoon.  It was satisfying, though I wished I could have launched it even further.  I wish I was a javelin thrower and could have sent that thing soaring, calculating the spectacle of its parabolic motion.  I was sick of it, with its glory stripped, now devoid of ornaments and only scraggly lights that demanded day after day to be removed.  I was pretty proud of myself really.  Sten said he’d take care of it, but I managed to get it all cleaned up with no major disasters except some sap on my pants I’m wearing for the first time in months.

Out beyond the valley the sun is lowering to the horizon, seems just to the north of the Spanish Peaks.  For a few moments the sun shone through the clouds, down in reflecting milky yellow light off of snowy fields.  The wind has been blowing for days causing incessant shifts of light and cloud and sky.  The wind chimes glinting with sound in the fir tree outside, singing as they have done for more years than I can remember, moving with us from place to place, singing the same notes, not melancholy but not cheery either, haunting, beautiful.

Time just keeps accumulating, moving, an ever-present force of reality, carrying me along with its tide.  Another Christmas come and gone.  Once more as I put away the lights, I wonder, I wonder.  What will next Christmas be like?  How will time have swept me along and like eroded rock, change the face of my life?  We returned home from Seattle safe and sound.  All went well with Allistaire and the only major sadness was that we had to cut out our trip to visit our friends in Portland due to them all being sick.  I was really so happy to be going home with several weeks before we’d have to turn around and go back.  But I surprised myself, sitting on the rec-room couch, crying the very next day, realizing I was entirely unsure of how to live my life, unsure where to step forward.

The clouds have shifted again, producing a vast triad of peach rays, diffuse like gauzy curtains draped down from the sky.  It looks like a blessing, like a kiss on the forehead of the valley, like lips reaching down over the blue of mountains.  Like the Lord telling his beloved how He cares for her.  And the sun lowers, now dipping below the clouds and the fullness of its light so immense and all-consuming, it blinds my eyes, so that all I see is truest yellow, penetrating eyelids and heart.  And it is beautiful and I know it will only last a few minutes before it will pull its light from the land as it descends behind the mountains.  Time is relentless and I both want it to stop and want to push it forward.  My life is lived in week-long segments, blood test to blood test, and shorter, meal to meal.  And shorter still, every one of her actions examined for evidence of health or catastrophe.

This morning I hit snooze three times.  I never do that.  I did not want to get out of the shower, but eventually I had to.  With nervous tingling in my lower back, I got myself ready for the day, and forced myself through all the many steps required to leave the house for yet another doctors appointment.  Last week it was a rash that showed up on her legs.  Could it be GVHD?  Could it be relapse?  I will never forget Dr. Pollard’s words in that last appointment of Allistaire’s first go at treatment, “an undefined rash can be a sign of relapse.”  Now the rays angle upward across the bellies of steel blue clouds, causing peach and pink skiffs to fill the sky.  The rash was basically gone in two days but then in her appointment we discovered she had dropped one whole pound from her appointment in Bozeman a month prior.   On the other hand she grew an inch since October which is pretty great.  Ever the question, of what does it all mean, and ever the answer, we’ll just watch it, we’ll just wait and see.  With sunset, the room, once filled with glowing light, darkens and I circle the room flipping switches and turning on lamps, pushing back the darkness and willing the day to last.

There are things one is proud of for no rational reason.  There are things we take delight in that having nothing to do with us, and are entirely out of our hands.  Allistaire’s hematocrit has always been tip-top, right up there at the very ceiling of hematocrits, pushing near 40 regularly.  That hematocrit felt like a secret stash that would guarantee safe passage.  I won’t deny it, I have scoffed at the hematocrit of others at times, smugly rejoicing in Allistaire’s fancy shmansy hematocrit that seems to always hover there at the highest heights.  It’s been dropping.  Bit by bit.  It’s still normal.  But normal doesn’t mean what it might have years ago.  Thirty-six is not normal for Allistaire.  It’s happened, but very seldom.  Today Allistaire stepped on the scale and her weight was back, up to 37.  Huge sigh of relief and thanks that all the perseverance in getting her to eat over the last week might could be helping.  But then I express my fear about her hematocrit to Dr. Ostrowski and she pulls down her eyelids, “a poor-man’s test for anemia,” she tells me.  “Yeah, they look a little pale.”  My heart drops and the tingling in my lower back returns with force and all the way to the lab and through the rhythm of drawing blood from her tubies, once again, my face is flat, the terror of what is to come, building.

An hour later I read the number 34.4 and can only think this is relapse.  We are about to be thrust once again from our home.  Once again separated from Sten and Solveig.  Once again my ferns will die.  Well, I must stick with my diet, I think.  I start to strategize how I can eat differently in the hospital this time.  No more coffee.  I cut that out almost two weeks ago.  Only salads from Starbucks.  Oh man, no more morning buns.  And I can run the stairs, all nine flights.  I’ve lost almost five pounds and I can now fit into one more pair of pants.  Now what do we need to bring with us – Allistaire’s CD player, and her colorful little clay letters that spell out her name and her eating chair.  Should I just go ahead and bring my summer clothes this time, instead of them trickling out across those 700 miles to me like the last time.  Wait, what is it going to be like this time?  What are they even going to do for her?  Can her heart even hold up to another transplant?  Will she emerge from transplant alive but in kidney failure like that other little girl I know who had transplants eight months apart?  Will Allistaire ever return home again?  What about Solveig?  We walk down the sidewalk to return a book at Country Bookshelf and the tears blur my vision and I can’t talk to the lady as I fumble in my wallet for the receipt.  Will I be torn once again from my home?

“I am your home Jai.  I am your dwelling place.”  But, Lord, but Lord, I want what this earthly life has to offer.  I know, I know, I know you’re my home.  You are my resting place.  And I wraggle in my heart with the Lord and in distress tell Him I want both.  But my life is not my own.  I don’t get to decide what comes.  I have learned these two hard truths – my love and my efforts cannot safeguard Allistaire’s life.  No matter how much I love her, my love my not overcome her being stolen away unto death.  No matter how much I exert all force of will and strength of mind, I cannot stop what may be inevitable. And I know this too – I will not stop loving her and I will not stop exerting all that is in me to come along side her on this brutal road.  But, ultimately, she is in the Lords hands.  When I told Allistaire that her sickness might be back and that we might have to move back to Seattle she said, “but that’s okay, you’ll be with me mommy.”  Oh how I wish I could respond to the Lord in the same way, “you’ll be with me Father, and that will make it okay.”

Dr. Ostrowski, our doctor here in Bozeman, relayed all the test results to Dr. Gardner in Seattle who is our acting attending doctor while Dr. Pollard is on medical leave for a few months.  Dr.  Gardner is the doctor that sat down with Sten and I on a Saturday evening two years ago and first told us that the cancer cells discovered in Allistaire’s marrow were Acute Myeloid Leukemia cells.  She is the doctor that called on a sunny winter afternoon last February 20th to say that the biopsy of the little lump in Allistaire’s back were indeed leukemia cells, and asked if we could get to Seattle the very next day to begin treatment.  She said that she believes the lower hematocrit is due to the cumulative effects of the Azacitadine that is known to increasingly lower counts the more doses received.  Some of the immensity of the fear and pressure were relieved when I heard her thoughts, but I won’t deny it, there is some strange superstitiousness one gains on this uniquely terrifying road – the sort that takes note of the bearer of bad news and anticipates a three for three with results coming up in a little over a week from the bone marrow test Allistaire will have on Monday, January 27th.   When I answer the phone on the evening of Tuesday January 28th, what will that voice of Dr. Rebecca Gardner be telling me?

We’ve been at this so long now that I constantly feel I should be used to it all.  It seems like I should have gotten over it a bit.  But I know logically that this irrational.  Death will never, ever be okay.  Separation from family and friends and home and ravishing of body will never, ever be okay.  Yes, my hope is that one day they will sit, nestled within a greater, infinitely more glorious reality that will somehow be the habitat of redemption for all sorrows.  Indeed, I pray such reality already surrounds our lives in the now, despite being invisible to my human eyes.  But – death will never be good.  I feel that I have wrestled and wrestled, trying to take the taste of death and a life radically disrupted by overwhelming illness and call it, not necessarily tasty, but at least edible.  Because it is as if every day that is what is served up before me to consume.  It is the bitter nourishment of which I am forced to partake.  It seems that most folks assume because we are home that we have jogged far from the dangers of death, that somehow because Allistaire has hair on her head and speaks with sweetest of voice and runs and laughs loud, that she is safe from harm.  “I mean, she’s in remission right?  She looks like she’s doing so great!  She’s fine now right?  This will be your last round of chemo right?”  Remission is fickle.  It is the thinnest crust of ice on a winter lake.  I don’t trust it and continue to live with the presence of that great chasm of black ever looming just to the side of our lives.

“Hear Your people saying yes, hear Your people saying yes to You, yes to anything You ask, yes to anything You call them to, hear Your people say amen, hear Your people say amen to You, let Your kingdom come on earth, let it be just like we prayed to You, yes and amen to everything that’s in Your heart, yes and amen to everything that You have planned, we live to see Your will be done and see Your perfect kingdom come on earth, on the earth, all Your promises are yes, all the promises are yes in You, hear Your people say yes, hear Your people say yes to You, yes to anything You ask, yes to anything we’re called to do, hear Your people say yes and amen to You.”  These are the words by Matt Redman, that sought their way into the forefront of my consciousness, like water seeking passage through rock.  As I stood at the kitchen counter, prepping dinner for the kids while Sten worked late, through the myriad of pressing thoughts, responsibilities, worries, and these words, repeated, “Yes and amen to You.”  And there it was so clear before me, this is what I had to swallow, this was the bitter nourishment that I need to consume to know life – I am not called to accept death or the horrors of sickness.  I am being asked to say yes and amen to anything the Lord my God calls me to.  It is His voice that is saying, Jai, dear child, sweet love, Jai, will you say yes to Me?  Will you say, Father, whatever life you give me, is the life to embrace, because it is gift from You?  Will you at long last, lay down the plans you have for your own life and truly, in your deepest core, see that your life is not your own and I am the creator, not just of the beautiful earth that surrounds you, but of the course of your life, of every single day that you have breath and every detail of your days?

I went to my Bible Study Fellowship (BSF) class on Wednesday.  I hadn’t done my lesson so I only listened as others discussed the questions on the passage in Matthew – the stories in Matthew 14 that talk about John the Baptist being beheaded, the feeding of the five thousand and Jesus walking on the water with Peter coming out, in faith, to Him.  To a number of the questions, women answered that the lesson learned was that if you put your faith in God, He will take care of you, everything will be okay.  The scream sought to burst from my skin.  “Do you call this okay?”  What I want to scream is that God is not the safe refuge we love to say He is.  You come close to God and you might just find your life ripped to shreds before your eyes.  You come close to this one we call Father, and you might just get a knife in your gut.  But I didn’t scream, instead I worked to keep the hot tears inside.  Not long later they poured forth as I spoke to a sweet grey haired woman who had been one of the teachers in Allistaire’s BSF class last year.  She asked if I remembered her and went on to tell me how much reading about our story had meant to her, but she was hedging, she was holding back.  Soon she was telling me how her sweet husband of many years was diagnosed with AML this past July and only two months later he was dead.  She could not have imagined the parallels that would be true of our two lives.  She is wounded, with deep seeping sadness, and we cried hot tears together.

That same night as I went to remove Allistaire’s dressing for a dressing change, I noticed blood.  The skin under her dressing has been having a really rough time the last two weeks and hasn’t been able to heal up and I assumed the small bit of blood to be her skin weeping.  As Sten and I went step by step through the dressing change, we suddenly saw great fat drops of brilliant blood on the blanket.  Another hole in the line, on goes the bull dog clamp, the alcohol wipe and the gauze.  I call Dr. Ostrowski and determine our plan.  Not long later, Allistaire and I are at the ER to get blood drawn for blood cultures to look for infection and to get a dose of the antibiotic Rocephin.  Because it was impossible to draw blood from her now defunct line, she had to have blood drawn from her arm.  I circled my body around her, legs entwined over her legs and arms holding down her arms and she screamed with face bright red, quick streams of tears and entire body flexing in absolute protest.  A little later, once that terror had passed, I pulled down her jammies to expose her upper thighs and the nurses came in coordinated assault, plunging the matching needles into her legs, administering the dose of antibiotic, and again the terror and tears and the circling her body in hug.

Yes, her mom was with her, but terror still struck and not just once, and she was not okay with it.  And like the Lord with John the Baptist, I could have stopped those points of sharp metal from stinging into her sweet flesh, but I didn’t.  The love of the Lord does not preclude us from overwhelming sadness and loss just as my love for Allistaire will sometimes result in me not protecting her from the harm that she is demanding and screaming she doesn’t want.  And this is why it is terrifying to say yes and amen to the Lord.  This is why the Lord is not the sort of refuge I want Him to be.  I want to make God into the image I want Him to fit.  But He will not be constrained by me.  And even as I scream and shake in fear that no Lord, NO NO NO  – Don’t take my child!  Don’t force us back into that place of relapse and daily fight for life!  Give me the life I WANT!!!!  He encircles me.  He speaks words of reassurance to me and says, “It will be okay.”

Somehow, I am starting to believe Him.  At an imperceptibly slow rate, I am releasing my life and the words, yes and amen, come a little quicker.  And it is starting to feel a little more okay.  I see that Tuesday evening, and even that Monday morning with results from her CT scan, and I can easily imagine my greatest fears crystallizing into reality once again.  And I can see my hopes for the days ahead, slipping away again into blackness of night.  And I am nestling in a bit more into the reassurance that all the days ordained for me were written in His book before one of them came to be.  More and more I am lifting my eyes, degree by degree to see that in the long view, it will be okay.  In the mean time, I may be shoved out into a small boat on a stormy sea by Jesus Himself.  He that makes the storm and can quiet the storm are the same God, a dangerous, wild, beautiful, utterly-other God, that calls me to trust, to say Yes and to know that even if the worst comes to fruition – even if like John whose head was severed from His body or like Stephen whose body was pummeled with stones, though my flesh, it be destroyed, yet with my eyes I shall see God.  Slowly He is lifting the veil and allowing me to see that the only thing that matters in this life is to say Yes to Him, to yield my life to Him and to know that in its simplest, most fundamental form, this life is about knowing God and making Him known.  It is His to determine how this will be manifest in my one little life and who I am to say what means are best?  So I hold much more loosely the plans that I have for myself, and not just because I am forced by circumstance to do so, but now too, because I long to, I delight to.

Beware what songs you sing in church or to yourself as you listen running or in the car.  Beware what you say you are agreeing to with this God.  He is asking for everything, and that’s the thing – I know He’s not done with me.  He’s persistent and He wants more of me.  More and more He wants sovereignty over the terrain of this life of mine.  As another Tuesday, and thus another set of labs, draws near, the sour taste of fearful relapse begins to rise, and even if this Tuesday is fine, what of the next set of test results the week following or the next month or the next?  I even fear His gracious sanctifying of my heart because it may signal His preparing me for harder days ahead.  But I thank Him for all that He has done, even for the scars that have disfugured because against all rational argument and by mysterious means, these knives to the gut, these ravaging have left me broken but more alive.  I am mysteriously fragile and gloriously resilient at the same moment. These wounds have been bound by the Lord, binding me more and more to Him and I am tasting life.

Yes and Amen Lord, yes and amen.  Hear this child, with weak voice, saying yes to You, yes to anything You ask of me, yes to everything You have planned.  Yes and Amen sweet, wild Lord.IMG_20131130_123656612_HDR

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Advent

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IMG_3328IMG_4956Tonight I listen to Ola Podrida because this is my music of two years ago.  Two years.  December 1st marks two years since this all began.  On a mellow winter afternoon on December 9, 2011, I was told cancer cells were found in Allistaire’s bone marrow.  Time slows, distorts, your body acts and your mind chugs to comprehend.  On December 10, 2011, Sten and I were told that Allistaire had Acute Myeloid Leukemia.  It’s been two years, two strange years and it always seems to be winter.  In a few short days it will have been six months since Allistaire’s bone marrow transplant.  I now know four kids that have died of AML, all in just a little over 6 months.  The eyes of eight parents, bereft.

Marleigh died yesterday morning, tucked in bed between her mom and dad.  I remember the day I met Marleigh and her mom Becca, excited to meet the only other person I’ve known on the exact same path, the same clinical trial.  That was May and it was Spring and there was hope.  I remember standing by the elevators outside the Unit toward the end of July, excited and jealous on the day Marleigh was discharged from the hospital and we were still stuck inside.   She was covered in extravagant, childish color from head to toe and great big, stylin’ sunglasses.  Often as I drove up to our apartment at Ron Don, I would look up to see Marleigh’s various purple and pink doll toys set up on their balcony in the sun.  Coming or going, we would run into one another, checking in on any updates.  I remember Becca’s slumped shoulders when she relayed the news that cytogenetics had shown the mutated markers of Marleigh’s disease.  I remember fearing it would be our own fate, and then it was.  And so chemo began and hopes of visits home.  I remember the day they were packing to move home to Spokane and I confessed my fear to her that the SCCA folks were letting the two of our girls go home because really they’d given up on them and didn’t have the guts to say so.

Since then I have regularly checked Marleigh’s Facebook page, Miracle for Marleigh.  I don’t know how to comprehend it.  On Tuesday Marleigh was sitting on the bed with her cousin making a wish list for Christmas.  Thursday morning at 3:03am, her spirit has flown from this world, leaving only her broken body with the other-worldly blue eyes, now lifeless.  I walk into Allistaire’s closet and I see the dresses, the shirts and sweaters.  I think of Marleigh’s doll toys, sitting in her house, Becca wandering from room to room.  She’s gone.  I look out at the snow-covered trees, the blue of hills and shadows and I know that death is common, but yet it is incomprehensible.  No matter how close we have skirted it, it remains at an impossible distance, a reality impossible to grasp.  I don’t know how you live when your beloved is gone, but you must and you can and that somehow seems wrong and yet your life continues.  I look into Allistaire’s cheery blue eyes and I wonder what next winter holds.

It is this ever rapidly shifting reality overlapped with the seeming normalcy of home that leaves me disoriented, wondering how I am to purpose my time and understand my place in the world.  Two children, with which we have walked this road at length, are simply gone.  At a Christmas party the other night, I was asked what I do, and I answered, “not much as of late.”  The outlines of my life have blurred and bent.  Those defining parameters look like poorly erased lines of pencil.  On first glance, all remains as it has been for years, not much has changed, and yet I feel dislodged, adrift, simultaneously elated at the freedom and uneasy with such wide-open expanses.  But it is the inner boundaries that have burst from such unceasing pressure.  On the outside I am constrained from trajectories of action I might like to take.  Here I would like to strike out and learn to cross-country ski and there, I would like to start my own business making jewelry.  My waist, two sizes bigger than two years ago, demands I attend to its straining discomfort.  Friendships and book clubs languish as I remain caught in a cycle of battling cancer from which I cannot emerge.

But within, I am beginning to slightly taste transcendence.  Circumstances buffet and I stand less swayed.  I am learning to actually hand it over to God.  Here Lord, here is my heavy heart over this conversation with my mom.  Here Lord, here is this scary lab result from Allistaire’s blood tests.  Here Lord, here is this confusing situation I don’t know how to navigate.  Here Lord, here is my wicked, angry heart that bellows in fury and sorrow.  Here Lord, here is my relationship with Solveig that has suffered over these past many months.  Here Lord, here is my day, unknown to me and held by you.  My goal and task oriented self has so been knocked off course that there is no longer a course to follow and I find myself coming back to and contemplating these words of Jesus from the book of Matthew 9, “But go and learn what this means: ‘I desire mercy, not sacrifice.’  For I have not come to call the righteous, but sinners.”  And these words from Micah 6, “With what shall I come before the Lord and bow down before the exalted God?  Shall I come before him with burnt offerings, with calves a year old?  Will the Lord be pleased with thousands of rams, with ten thousand rivers of olive oil?  Shall I offer my firstborn for my transgression, the fruit of my body for the sin of my soul?  He as shown you, O mortal, what is good.  And what does the Lord require of you?  To act justly and to love mercy and to walk humbly with your God.”

I have never had one long-term job that I could latch onto in order to define myself.  No, in my working years I have been a cashier at Crazy Eric’s Burger Bar located at the local fair grounds, a Resident Advisor and a Resident Director, a food service worker, a camp counselor, an AV tech, a 911-Dispatcher, a math and science teacher, a case manager with homeless women and children, a guardian to individuals with disabilities, a bookkeeper, and had one 5-day stint in a bottle factory.  I’ve had no career, but I defined myself by my ability to work hard, learn fast and get along well with people.  Being a mom has been, without question, my hardest job.  And it turns out, I’m not so great at it, despite trying extremely hard.  And with all that has happened with Allistaire, I had to basically abdicate my position with Solveig for a long time.  Most recently, extreme struggles with getting Allistaire to eat has left me subconsciously flabbergasted that I cannot even fulfill my most basic task as a mom, to feed my child.  I don’t earn any income and every day seems marred with failure, for no matter how many scores of minutes I demonstrated patience and kindness, inevitably I break and yell and feel wretched within minutes but am still reeling with absolute incapacity to get my child to do what she so desperately needs to do to sustain her life, nor am I able to keep my mouth and emotions under control.

To put it bluntly, I have basically nothing to show for myself, or at least, far, far less than I would like.  It seems all my advances and efforts are thwarted and I am forced to ask myself and the Lord, what is left?  What is left of me God?  I am a heap of weak mortality.  And in this wretched, broken state, the sweet voice of the Lord speaks tenderly and He is showing me that He is the One who defines me.  He is the One who defines my worth.  He is the One who simply wants me to walk humbly with Him.  That’s it.  There is nothing more.  Those aspirations I have clutched so dearly, have been forced from my hand.  Those voices that yammer for me to be this and that and have this experience and that possession, and this expertise and knowledge – the world is growing strangely dim.  How long has He been saying the same thing over and over?  But how deaf my ears and how weak my eyesight, how sluggish my heart.  Thank you Father for your persistence, for your patience, for your very long-suffering with me.  Thank you that you have me in your grasp.  He is sowing contentment, rest, submission, in my soul.  My standards of perfection and achievement are smudged and growing slightly more faint.  I am finding the turbulence of this life having less power over my more rooted self.  The simple beauty of walking with the Lord is rising up.  But I can look up at those calls to act justly and love mercy and I look back at my wretched heart still so full of earthly plans and desires and standards and the enormity of justice and mercy makes my sway and dizzy.  But there, His voice again, walk with me, just walk with me.  I have your heart, I am the potter, He that forms you into my likeness.  Yield under my hands.  He is helping me bit by bit to yield, to rage less, to delight more. Little by little, with such minute increments, I am more tender with my children.

At the Christmas party, I am quite bland in contrast to the world-traveling Irishman or the Frenchman turned American who has re-invented himself as a writer.  In this town, I fear I have not much to show for myself.  I am quite unaccomplished and there is the part of me that is greatly dissatisfied by this predicament.  And the thing is, I am not even very good at walking with God.  Incessantly I stray, drag my feet, have far less understanding and knowledge than I feel I should have and the severity of my lack, the fruits of the Spirit not so abundant, threatens to steal away my hope.  Within and without Christendom, I have little to stake claim to.  I have only this, unending grace and forgiveness that far outmatches my failings and weaknesses – the face of my Lord entreating me to yearn only to stay at His side.

These weeks at home have been great delight for Solveig and Allistaire, punctuated by sibling squabbles – Solveig the Silent and Allistaire the Aggressor.  A fabulous winter storm dumped snow, covering all land and trees, and the then the temperature plummeted, down to minus twenty-four at a few points.  Something about the severity of the cold invigorates the collective camaraderie of the town and while the Christmas Stroll may have been less populated, it was nevertheless cheery as we ducked in and out of stores and galleries for reprieve and the hand warmers in our mittens, never so cherished.  Allistaire herself has been doing really quite well, with the one exception of her eating which has turned into a grand battle of wills, stretching the consumption of one egg and a cup of milk into a two-hour event.

At Tuesday morning’s clinic appointment I expressed my weariness over the effort required to get her to eat.  This seeming lack of appetite, a point-two kilogram drop in weight from the week prior, redness of her cheeks and a bump up in one of her liver function tests, prompted Dr. Pollard to consult with the GVHD SCCA docs.  In the two days before I heard from her, Sten and I did some serious strategizing and determined that hence forth, we would offer Allistaire only foods we knew she most willingly consumed, things like hotdogs, mac n’ cheese, cheese pizza, eggs, cheese, pasta and tons of whole milk.  Somewhere deep in the recesses of my mind, I want Allistaire to live like a normal three and a half-year old, which to us includes eating what the rest of us have to eat for dinner.  In the same way I had to come to the realization that being at Ron Don did not mean that she needed less Zofran (anti-nausea) than in the hospital on chemo, so I have to remember that just because we live at home, does not mean she is normal.  She has had chemo dumped steadily into her body for nearly ten months.  She may be in remission, but that does not erase what has transpired or what she feels like right now as she continues the fight.  And she’s three and a half and such a fighter, just stubborn as all get out – amazing in her ferocity at times.  Sten and I are intent on deflating the intensity and emotion of our need to get her to eat and her resistance.  For breakfast, Sten has begun making smoothies with Ensure and she and I read stories while she takes sips.  At lunch she gets to watch little videos.  The time to consume her food has reduced quite a bit and the battle is much more minor.  We are also trying to get her up and eating a bit earlier in the morning so that there can be greater chunks of time between meals which will hopefully thus increase her sense of hunger.  It’s hard though, between meals she is drinking her water bottle (12oz) full of whole milk.

What is the source of this struggle to eat?  We wade through the many possibilities – chemo, maybe even accumulated effects of chemo, three-year old fights of will, GVHD, some combination?  The biggest concern of course is that it could be GVHD.  As of last week, she is completely tapered off Beclomethasone, a steroid to treat GVHD in her gut, which she has been on since July.  The hope is that she would do well coming off this localized steroid and an additional tapering of her systemic steroid, Prednisone, would be approved to start sometime after her upcoming clinic appointment with Dr. Pollard at Children’s on the 23rd.  The significance of this taper looms large for me as I recall the words of the SCCA doctor who described the optimal scenario for Allistaire, to be completely tapered off all steroids in conjunction with the end of her chemo treatment, in order to maximize her immune system’s ability to fight her cancer.  Many kids are on immune suppressants for a year or more post transplant, but most of the time they don’t have disease present post transplant.  The need for Graft Versus Leukemia, is clearly of utmost importance to Allistaire’s ability to survive.  On Thursday I listened to a message from Dr. Pollard saying the SCCA doctors wanted to see Allistaire the following Thursday, 12/19 – they were on vacation after that.  Well, I was certainly not at all excited about cutting our own time/vacation at home five days short and nor was I convinced there was clear evidence of GVHD (please note I am no doctor and have no expertise).  Allistaire has not been throwing up, having diarrhea, or expressing pain and things had improved with her eating with our new tactics.  Fortunately, Dr. Pollard was fine with holding off and we are still planning to see her and start chemo on the 23rd, unless things change.  Allistaire has clinic and labs again this coming Tuesday, so we will see what her weight is then and check all her numbers again.  She is stilling struggling with a bit of a cold, which in itself can cause one of your liver numbers to bump up.  Fortunately her other labs look good – hematocrit of 45, platelets 211 and ANC and unimpressive 612.

These days we really don’t plan more than a few weeks in advance, even knowing that can change in a flash, but we are hoping our Christmas plans work out.  Allistaire is scheduled to get chemo every morning December 23rd through the 29th.  Because she is scheduled in the mornings and the infusion is only 15 minutes long, we really have big chunks of each day.  Sten and Solveig will be flying in on the afternoon of Christmas Eve and we are planning to head up to my brother and sister-in-law’s house in Everett for the remainder of Christmas after chemo.  Once she has finished her week of chemo, we are looking forward to a couple of days at my parent’s house, followed by a day with dear friends in Portland before we head home and hopefully arrive safe and sound on January 3rd.  After that I don’t know.  At this point, we would expect her to get her last round of chemo at the end of January.  I am guessing Dr. Pollard will want a bone marrow test this time around and likely another one at the end of that 6th chemo cycle which would be at the end of February.  Who knows, that is so very far away in our world.

Today, I am praising God that He has sustained Allistaire’s life these 6 months since transplant and that her disease is under control, at least for now.  We are about to pass this significant date which marks the possibility of another transplant, should she end up needing one.  The thought of another is quite overwhelming, but we walk on, sometimes trudging.  You’re not supposed to look at another who has less than you to make you thankful.  The girl who is chubbier or the family that is poorer is not supposed to be the marker by which you give thanks, but there is this reality that while our lives are not what we wish, we know we have such unbelievable abundance to be thankful for, and it really, truly could be so different.  Allistaire is alive, and doing well and we are together as a family.  And I, I am coming to be more acquainted with turning my face to the Lord.

This is Advent season, a time of waiting – a time to remember back to the days that people awaited the first coming of the Christ and celebrating the birth of Jesus, Emmanuel, God with us.  And this is a time of waiting for His return.  It is a time of darkness as we draw near to that shortest day of the year on Winter’s Solstice.  It is a time of groaning and tears as we face our finiteness and our mortality and mourn the loss of our beloveds.  We wait.  We wait, in eagerness, like watchmen wait for the morning.  We wait for our Lord to come back and make all things right and to wipe away every tear and fill utterly and completely, spilling over, the light of life in our hearts and all of creation.  We are waiting for you precious Lord.IMG_6023 IMG_6026 IMG_6029 IMG_6037 IMG_6040 IMG_6045 IMG_6062 IMG_6072 IMG_6079 IMG_6084 IMG_6088 IMG_6095 IMG_6105 IMG_6109 IMG_6110 IMG_6113 IMG_6116 IMG_6122 IMG_6152 IMG_6195 IMG_6199 IMG_6200 IMG_6202 IMG_6207 IMG_6208 IMG_6214 IMG_6225 IMG_6229 IMG_6233 IMG_6246 IMG_6254 IMG_6266 IMG_6271 IMG_6285 IMG_6286IMG_6299IMG_6280 IMG_6287 IMG_6291 IMG_6295 IMG_6296 IMG_6297 IMG_6306 IMG_6327 IMG_6333

Cornucopia

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IMG_5775I was lured out of the warmth of my bed into the darkness of the cold house, no visual evidence of impending morning, only my body sensing the pleasure of the quiet hours.   I was further drawn out the door into the fridgedness of the coldest hours, those just before dawn.  The absolute perfection of white and blue sparkling stars drew me with the sickle of moon wed to its darker fullness.  The stars, the closest thing to eternal known to my eyes, they put my life into perspective, its smallness as they whirl through their courses of night and season and epoch.

And I would like to be doing something so very small, putting away the piles of bags and boxes I unloaded from the Suburban yesterday.  Yet, the stars silently speak of eternity and my small but mysterious place in the eternal tale and I am compelled to speak.  Yes, I am giddy to set aside the muted oranges of fall and Thanksgiving and pull out all of the sparkle and happy flash of Christmas, after all, it is the day after Thanksgiving, the day for as long as I have been an adult, that marks the beginning of Christmas celebration.  But yesterday, as I drove those many long miles of I-90, crossing over the Clark Fork over and over, watching clouds hug the dark hills of evergreens and clinging to the waters of Lake Coeur d’Alene, as my eyes savored the endlessly lovely sights, I knew that likely my prayer had once again been answered.  “Make my joy complete.”  For some reason, this is the prayer my innards cry every time I leave the house on a trip.  With our departure in February and the weighty knowledge of Allistaire’s relapse, I wondered if she would ever again enter our home.  And while we have now joyously been able to return home several times, every time we leave for Seattle, I fear we may become entrapped, entangled in cancerous circumstances that will prevent her return.  But the sun is rising far to the east and the outline of the hills is becoming clearer, and we once again know the joy of awakening in our own home.

As the days before our trip grew near, a sense of nervousness and heaviness began to spread and fill in me.  Winter storm warnings made the journey sound treacherous and I imagined being in an accident, rolled off to the side of the road with Allistaire, and we alone, having to make it somehow to safety.  We would not be returning to our apartment at Ron Don.  There was no sort-of-home awaiting us and I wasn’t excited about the idea of Allistaire and I sharing one room in Ron Don for the next 10 days, if even a room would be available.  And more than anything, the bone marrow test and echocardiogram loomed before me.  I knew a weakened heart could stop Allistaire in her tracks, unable to move forward with treatment.  I had a secret hope that maybe, just maybe, if this bone marrow test was good, maybe Allistaire would be okay, maybe she would make it.  Other little challenges of life added to the weighty pile, including a nearly $1,000 car repair bill for a busted differential on the Suburban that appeared to have been someone else’s fault.  I wish I could say I’ve learned how to walk intimately with God through all of this.  I think there are ways that I have, but I see that He calls me to so much more, so much more reliance on Him.  So with heavy, thudding prayers, I asked Him to provide.  Just provide God.  Just go before me as you have so many times before.

The car dealership that last serviced our car and our differential, took responsibility and paid the bill.  We got a letter from Seattle Cancer Care Alliance that the $9,000 bill for donor testing back in May, had been approved to be covered by their financial assistance.  Ron Don had a room for us and better yet, friends of a friend offered to let Allistaire and I use the two rooms and bathroom in their basement, only minutes from the hospital.  Only hours before I was to head out to Seattle on Saturday the 16th, Sten’s parents suggested that he drive with me and that they could use air miles to fly him back Sunday night.  Uh, wow Lord, thanks for the provision.  Thanks, thanks.  Let me give you thanks oh God!

Then Monday came.  Allistaire’s ANC had dropped to 326.  I had not seen an ANC so low since our days early after transplant.  Only three days before it had been 1710.  Oh please, please just let it be because of this cold, this virus, she has.  So the day continued with an echocardiogram, a clinic appointment with Dr. Pollard, and a bone marrow test.  Late in the day I called for echocardiogram results, unable to wait any longer.  Allistaire’s ejection fraction had risen slightly from 50 to 53 and her shortening fraction had risen from 25 to 27 – still a little below low-normal but slightly improved and we’ll take that!  Allistaire joyfully talked to Nana and Papa and Daddy on the phone, telling them her heart was stronger, little knowing just how significant and glorious this news was.  The crazy part is that this weakening of the heart is not a result of her current chemo which is not known to result in reduced cardiac function.  This is from her original chemo, nearly two years ago.  Apparently, girls under 2 (she was only 21 months when she began treatment) are hardest hit and she had a number of chemos that are very hard on the heart.  They tell you this is possible, even likely, but it’s just hard to comprehend such delayed consequences of treatment.  So what a relief that her heart was strong enough to continue.  Thank you Father, thank you!

Tuesday we spent at my parents house.  It was the first time Allistaire had been able to be there since Christmas last year.  It’s only a little over an hour from Seattle, but way to far to have been allowed to travel until now.  We had a lovely time but the nagging fear of bone marrow results, stole away some joy of the day.  As the afternoon turned to evening, my anxiousness grew.  Dr. Pollard had said emphatically that she would have results on Tuesday.  I called at 4:30 and was told results were still not back.  At last I went to the room in which I was staying and closed the door and opened the Bible.  I intended to read Psalm 121, but turned unintentionally to Psalm 20 instead.

May the Lord answer you when you are in distress;
may the name of the God of Jacob protect you.
May he send you help from the sanctuary
and grant you support from Zion.
May he remember all your sacrifices
and accept your burnt offerings.
May he give you the desire of your heart
and make all your plans succeed.
May we shout for joy over your victory
and lift up our banners in the name of our God.

May the Lord grant all your requests.

Now this I know:
The Lord gives victory to his anointed.
He answers him from his heavenly sanctuary
with the victorious power of his right hand.
Some trust in chariots and some in horses,
but we trust in the name of the Lord our God.
They are brought to their knees and fall,
but we rise up and stand firm.
Lord, give victory to the king!
Answer us when we call!

I began praying the Psalm as I read it.  Yes Lord, answer me in my distress!  Yes, Father, send me help from your sanctuary.  My heart echoed the words of the Psalm and then I read the words, “may he give you the desire of your heart, and make all your plans succeed.”  Okay, Lord, yes, yes, that would be lovely, glorious, but I know your ways are higher than my ways and my plans, and the desires of my heart may not be what you have for me right now.  I continued to read through the Psalm and pray its words but I thought, God, you taunt me.  Victory?  Victory?  How can I hope for such?  Why did I have to read this Psalm right now, of all the Psalms to read, I just don’t know how this is going to help me bear the weight of hard news.  “Some trust in chariots and some in horses, but we trust in the name of our God.”  Yes.  Yes.  I trust you Father, that you are able to bring healing.  My ultimate hope is in you for Allistaire’s life.  Yes, Father, I trust you in the face of her possible death.  My hope is not in my own strength to cope with sorrow or make sense of why you would allow such woe – I put my hope in you, I entrust my heart and my life to you.

The phone rings and it is Dr. Pollard calling from her twin boys swim lessons.  “It’s all good,” she says.  The Flow Cytometry is good, no detectable cancer.  “It’s all good,” I yell down the hallway.  And I laugh and I think on the words of that Psalm and I am humbled by the mercy God has shown me this day.  Mercy.  So many times it has felt like we are walking to the gallows or her sweet head lays below the guillotine, and then we are led away from that death.  Life has been sustained once again.  Oh Father.  Thank you is so utterly insufficient.

The week continued thus on, with an appointment with GVHD guru, Dr. Carpenter, at SCCA on Wednesday.  I think his words were, “she looks like a million bucks.”  I’m so sad I missed the open door to correct him, “actually four million bucks!”  He was absolutely pleased with how she is doing.  Without me even knowing it he was examining her.  “Her skin looks great, her hair looks great, her nails look great.”  No, he’s not a beauty expert but knows how to spy the signs of GVHD.  It was decided that because their clinic schedule is on a 6 week rotation and Allistaire’s chemo is every 4 weeks, rather than coming to Seattle twice a month, he felt comfortable in having Dr.Pollard look for any GVHD concerns at the beginning of her next course of chemo, and then being seen with him at SCCA the following month.  The goal is to taper her Beclomethasone which is the steroid for her gut and it that goes well, a few weeks later, begin further tapering her systemic steroid, prednisone.  Ideally, Allistaire would be completely off all immune suppression/steroids, either prior or in conjunction with the end of her rounds of chemo.  The idea is that if she is no longer receiving the opposition of chemo to her cancer, she needs the maximum effect of her immune system (Graft Versus Leukemia), to give her the best shot at staying in remission.  In consulting with Dr. Scott Baker, who has the most experience with Azacitadine (though in the adult setting), his recommendation is to plan for 6 rounds if there is still no evidence of disease at any point.  She has received 4 rounds so far and so conceivably could only need the December and January rounds.

Even with the good news and the beginning of chemo on time, I still felt hesitant in my joy, knowing that we were still waiting for cytogenetics and chimerism results.  The cytogenetics are normal – there is no evidence of the MLL-rearrangent that has been the marker of Allistaire’s disease.  The chimerism results show 100% donor.  This time the sample was taken from her marrow rather than the peripheral blood.  If something were awry, it would seem likely that it would show in her marrow first.  One hundred percent donor!  Walls toppling again.

As always, I am now wise enough to know that these results are for the day and the tests are imperfect, but nevertheless, there is SO MUCH to be thankful for!!!!  I ran into Dr. Rosenberg, our first attending with Allistaire’s relapse.  She said she heard Allistaire was doing great.  I was hesitant.  She said to me that I should say she is doing great with such great news of her flow cytometry.  I was hesitant.  Later that evening I found out that little Christian died last week.  Christian also had AML.  He was diagnosed a few months after Allistaire and relapsed a few months after her.  He had a transplant about a month after her.  His family packed up and moved out of Ron Don the very same day Allistaire and I did.  Despite the language barrier, I saw the joy on their faces.  They were going home with their boy.  It seemed all was well.  That was only a month ago.  Christian is dead.  I don’t know any detail and my mind cannot fathom it.  I saw Dr. Rosenberg again a few days later and told her she was right, I should say Allistaire is doing great.  The doctors and nurses, they have seen so many times seen the suffering and death that can be the reality.  They see Allistaire in contrast to that.  I look at Allistaire and I hope for a normal life for her; I look at her in contrast to “normal” three and a half year olds.  Doctors will talk to you of “quality time,” and the truth is I want to scream in their faces that I am not interested in quality time – I want quantity – I want a life time for my child!  I know they are only speaking as they must and are speaking according to their body of experience with countless children.  I don’t scream.  I just nod my head.

Father, thank you for quality time.  Thank you that my child looks like a million bucks.  Thank you that Allistaire’s energy surpasses that of nearly everyone I know.  Eating is a phenomenal struggle. It has been an epic battle but I pray as we get farther from chemo, it’ll get a little better again.  She actually gained a little weight, up from 16.3 kg to 16.6 in a week.  Another victory, another gift.  Our hosts from this past week and a half have offered their home again for Allistaire’s December course of chemo that should start the 23rd.  More provision, more bounty.

Remember in elementary school the cheesy thin cardboard images the teachers would festoon the room with for each holiday?  For thanksgiving there were always turkeys and pilgrims and that weird conical basket with various fruits tumbling out of it.  “The Cornucopia, or horn of plenty, is a symbol of abundance and nourishment, commonly a large horn-shaped container overflowing with produce, flowers, nuts, other edibles, or wealth in some form.”  Yes, I’m excited to move onto Christmas, but I would be utterly remiss, if I did not speak of God’s provision of overwhelming abundance – of extravagant wealth, of unmerited mercy, of love that I hear spoken to me not with my ears.  Thank you Father above and Holy Spirit indwelling.  Thank you Christ who in your death and resurrection, overcame sin and death.  Thank you for bounty, both inwardly and outwardly.  Thank you for this day, the day the Lord has made.  I will rejoice and be glad in it!IMG_5940 IMG_5914 IMG_5911 IMG_5909 IMG_5895 IMG_5880 IMG_5882 IMG_5885 IMG_5887 IMG_5892 IMG_5876 IMG_5874 IMG_5872 IMG_5871 IMG_5867 IMG_5820 IMG_5833 IMG_5845 IMG_5847 IMG_5853 IMG_5808 IMG_5800 IMG_5788IMG_5944 IMG_5949 IMG_5953 IMG_5964 IMG_5969 IMG_5970 IMG_5971 IMG_5984 IMG_5999 IMG_6004 IMG_6009 IMG_6016

Intermingled, Intertwined, Infiltration

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IMG_5717 IMG_5720 IMG_5745Is it like oil and water that sit side by side or is it like ink in water that mixes and colors the whole solution?  Both probably.  Probably both.

We moved out.  We flew the coop.  We said, “Peace OUT, Ron Don!”  We moved home.  We unpacked.  Our clothes hang in our closets and I pull my deodorant out of my own medicine cabinet.  I have a drive way and a mail box and a grocery shopping list.  I hung my hay bales painting back in its rightful spot.  I am reclaiming my domain.  I am driving the stake into this ground.  And I am hoping, praying we get to stay.

I was hesitant to start writing this post because I have not heard back from our pediatrician, here in Bozeman, about the remainder of Allistaire’s labs.  How am I to frame this post, how am I to frame my day, my life?  We went in for Allistaire’s weekly check up and labs.  Almost everything is back and everything looks great so far.  Her hematocrit is 40, her platelets 227 and white blood count 3.  We’re just waiting for the manual differential to come back.  It’ll probably be fine.  All her other numbers are fantastic.  But that seed of horrifying reality has been sown far and wide in our life.  Looks can be deceiving and that’s why I hesitate.

I hesitate in knowing how to step forward.  I never thought I would move home in a state of limbo.  I always assumed there were two options:  she lives or she dies.  But again, here I am, in this land of the already and the not yet, in the good but bad.  I’ve been here before.  When we came home last June 2012, I existed with the constant fear of relapse ringing in my ears.  And those fears have been realized, and so much more.  And the truth is there is no going back.  There will always be the fear of relapse.  There will always be so many fears that can crystallize into reality before my very eyes.  The longer you are on this journey, the more names and faces and stories you amass and they become as significant as any statistic science can give you.  They are the flesh and blood behind the numbers.  They are the children that barely made it through when all the odds were stacked against them.   They are the parents that just yesterday, faced the 6-month anniversary of their beloved boy’s death.  The other little girl on the study with Allistaire, Marleigh, is not doing well at all.  She went to Disney Land on her Make a Wish trip and towards the end of it began experiencing such intense pain in her legs, spine and abdomen, that she stopped talking and refused to let anyone touch her.  She had 20-30% leukemic blasts in her peripheral blood.  She was stuck in a hospital in California until they could arrange a special flight home.  Please be praying for her and her mom and dad, Becca and Matt.  You can follow their story on Facebook, “Miracle for Marleigh.”  When I look at Allistaire I think of Marleigh.  When I read of Marleigh’s agonizing struggle, I think of Allistaire.  Intertwined.

By all appearances, however, Allistaire really is doing great.  She completed her steroid taper this past Saturday and is now on only 3ml of Prednisone every other day.  Her appetite is not spectacular and it still takes an extraordinary amount of time and prompting to get her to eat her three meals everyday but she has only lost .1 kg since she was weighed at Children’s last week.  Dr. Ostrowski thought she looked slimmer in the face and tummy today since last she saw her a several weeks ago.  To use my brother’s words, “she looks deflated.”  It is likely that she has and/or will lose some water weight as the steroids cause you to retain fluid.  She’s sleeping, peeing, and pooping well.  There’s no sign of a skin rash.  No vomiting or fevers.  And energy?  She outlasts Solveig.  Solveig will eventually slink away to her room or the living room chair to indulge in a book only to have Allistaire track her down and plead to do more of their spinning games or perhaps another round of being kitty’s together or playing rodeo where they take turns doing tricks with their stick pony, and saying things like, “Good girl, Flower.  That’s a good job.”  So far no apparent GVHD flares or other outstanding issues.

The house fills with the bright airy light of reflecting snow.  Solveig spied two moose down in the aspen trees the other morning. Allistaire made snow angels and dumped shovelfulls of snow into the wheel barrow.  In the morning all is blue and white and then the sun begins to rise, skimming off the eastern slopes of the Spanish peaks, all pink and orange.  Life is really good and life is really strange.  I told Dr. Ostrowski, I feel a little less crazy than I felt when I brought Allistaire home after she was first treated.  She assured me I’m not crazy.  I wondered aloud if the normalcy of cancer in Seattle at Children’s and SCCA, makes my feelings and responses seem crazy when to every professional around me, all just seems common place.  How do I move forward?  What steps do I take?  How do I spend my time and energy?  In what relationships do I invest?  How do I prioritize?

Here’s how things could go.  Here’s how things would go in the most ideal scenario:  We spend another lovely week and a half at home enjoying friends and family and beauty and then Allistaire and I will head back to Seattle around the 16th or 17th of this month in time for a bone marrow test on November 18th.  We will wait for results before resuming chemo.  On the 20th, Allistaire will be seen by GVHD guru and SCCA Continuing Care Clinic doctor, Paul Carpenter.  If results are good, ideally 0%, Allistaire will begin her fourth round of chemo on the 21st and finish up on the 27th, just in time to jump in the car and get on the road so we can get home on Thanksgiving day.  If bone marrow results were between zero and five percent, we would have no choice but to continue on with the Azacitidine, given that you must have 5% or more to be eligible for the possible clinical trials she could try.  If it is over 5%, well, then who knows.  We go with the best clinical trial, home to keep things under control and make it to a second transplant.  So many options.

People keep asking me if it is so great to be home.  Here is a suggestion.  Ask an open-ended question.  Asking me if it is great to be home forces a yes or a no response and it makes me feel awful that I can’t just give a simple, pure, “yes.”.  Something core says to me that home is supposed to be where things are “normal,” life is good and safe.  I never wanted this “thing,” to cross over the threshold into my home.  This is my domain, this is the place where I am supposed to preside over what occurs.  I am supposed to be in control in this place, or so I tell myself.  But here it is, this wild, sneaky cancer dwelling right where we sleep and eat and have our family pictures.  It really is like the title of that movie, “A Lion In the House.”  Safety and control have been extinguished and you see, this place, this building, this sacred home was supposed to be a place devoid of cancer.  Allistaire was never supposed to be here with this thing still lurking.  But this is our life and we have no idea how long we will have to try beating it back like a wild-fire in a dry field.

I started this post with fear rising as time progressed and no lab results had been given.  Several hours later all was well and we had the manual differential that all looked great and a nice ANC of 1710.  Since I began writing, it seems Marleig’s chemo is  steadily reducing the blasts in her peripheral blood and she is smiling again.  Since I began writing, my texts to Pam (Caden’s mom), have turned from the joy of trying to plan dinner together next week, to the horror of the news that Caden has relapsed.  There is less than 1% neuroblastoma cells in his marrow, but it is there and now they face ever-deepening darkness.  It is a terrifying thing to have your child diagnosed with cancer, but it really cannot compare with the terror of having them relapse.  Relapse means you’ve already tried the best available and it didn’t work.  Relapse means you’ve already been at this a long time and watched your life get ripped up and twisted into something unrecognizable to your own eyes.  Relapse means you now know the faces and names of those who have gone before you and you have details of horror from which you are desperate to turn away.  Relapse means you are already so worn down.  You have virtually exhausted your resources – resources of time, money, energy and heart.  With diagnosis, you meet the enemy head on with determination.  With relapse, your tenacity and resilience is waning, but never has the fight been more fierce.

You see that spectacular view of a snowy field and all the delicate details of limbs outlined in snow, morning sun beginning to rise?  You see those two girls frolicking together ceaselessly, bringing you the greatest joy this earthly life can offer?  You see that sweet, excited face ready for you to be amazed at her creation?  Home is full of unending beauty and joy and gift.  And home is tainted with the sour, acrid taste of impending doom.  Creeping into the edge of every moment, is cancer, but more, it is the potential loss of something more dear to you than your own flesh, than your own life.  Yes, there are joys upon joys, but they are too, reminders, evidence of how much can be lost.  I have come to see with utter clarity that I am in control of almost nothing and that everything dear to me can be taken away and destroyed.  These realities leave me gasping, wondering where it is safe to take the next step, where do I put down my body weight, because it seems that at any moment, the ground may give way.  No matter how sure the footing appears, every step forward is tenuous and vulnerable.

I have asked myself a hundred thousand times, what really does my faith do for me?  Because I do fear.  I do worry.  I do feel undone.  Am I really any different at all because of my belief in this Jesus Christ?  I look around and see plenty of people fumbling their way through this crazy road and they look like they’re doing at least as well as I am.  We all have the same amount to lose.  We may all lose our child and not one of us thinks our child is less precious or glorious.  Not one of us yearns less to have our beloveds always with us.  As a Christian, losing Allistaire, is still losing Allistaire and I am desperate to have her with me.  And my love for her propels me to fight with all the vigor I can muster, to sustain her life.  I will not cease in that.  Even as I know that the Lord may take her, still I endeavor to keep her.  I find myself in the very strangest of predicaments, in the most bizarre of places.  I stand on both sides of seemingly opposing forces.  I stand with the smarty pant doctors, and fancy drugs, and big medical centers and over four million dollars, pulling out every conceivable weapon to keep Allistaire alive.  I call upon the Lord my God to use all of this resource and knowledge of the body to protect and provide for her.  I ask Him to use His status as God, to do what even science may be unable to accomplish.  And I stand in the opposing direction.  I stand with the Lord who says that He is the only one who determines the days of our life and gets to choose when our life is done.  I stand with the Lord and hold my child with open hands and say, “Yes Lord, she is yours.  Her life is yours and she is in your hands.  You have authority over her life and her death.  I kneel before you as the Ancient of Days, the God of the Creation, as my Savior.  I submit to your goodness.”  It is very mysterious and mind bending to stand on both sides, and really even to stand with the Lord on both sides.  These two forces are in direct opposition to one another, or so it seems.  As my dear friend put it, I am at war and peace.  I retain my place in the front lines of this fight and I strive to enter the rest God has extended to me in Christ.

So, faith in this God, what really is it offering me, because on the surface the loss is the same and the sorrow for that loss is the same.  I do not grieve less for the possible loss of Allistaire because I believe in Jesus.  But Allistaire’s death is not the end point.  My hope goes beyond the hope for her life to be sustained.  Yes, I put my hope in something that I cannot see with my eyes, that cannot be measured, that seems outlandish.  I put my hope in God’s words that say there is life beyond death.  I put my hope in the bold claim that life is eternal and that this earthly life is really a breath that vanishes.  I put my hope in a God who will overcome all sorrow with joy.  I put my hope in a God who will one day utterly wash away the rank sin of my heart and the putrid diseases that steal away our life.  My hope is not only for the fleshly life of Allistaire, but for fullness and eternalness of life for all who seek after God, in Christ Jesus.

The question I ask myself is how do I live out my daily actions in light of these hopes I cling to?  How do I orient my heart and mind so that I am not just constantly battered by winds that change the landscape of my life?  How do I see through every situation and activity to its core worth?  How do I spend my resources of heart and mind and money and energy on what really matters?  How do I look past the barrage of the tediousness in life and have eyes to see down to the root, to the thing that is of immense value?  How do I not become undone in frustration trying to get Allistaire to eat, and instead fix my eyes on showing her love above all else?  Yes, I am called to fight for her flesh and get food into her body to sustain her, but how can I do that in such a way that I am primarily caring for Allistaire’s spirit?  Yes, I need to teach Solveig to not leave a trail of clothes and toys behind her, but how can I do that in a way that builds up the spirit of my little girl, rather than tearing her down.  I am still relatively young in my faith and I have so far to go.  I put my hope in God’s Spirit being at work in my heart, teaching me the way and showing me the path into His Rest where fear is diminished and worry begins to fade, hope fills the heart and peace infiltrates all the farthest reaches.

I put my hope in the seed, in that which God has planted in me and which He will tenderly nurture.  I am land that looks more barren and desolate than I would like.  I long for lushness and the extravagance of jungle, so thick with life.  The life of the seed does not look like the life of the tree.  On the surface, at this present time, perhaps I don’t look much different because of my faith, but there is at work in my heart that which God has promised He will unfurl into abundant beauty.  I am plowed ground, ragged.  I want the pay-off right now, here, in this time and this place.  But what God is growing does not spring up out of the ground overnight.  The glacier slides imperceptibly down the slope, gouging and ravaging as it goes.  It’s impact is slow to be revealed but undeniable when seen and behind it is produced beautiful valley and habitat for life.  I heed His word to me, I am expectant, I am watching, I am hoping and I am keeping my face turned to His radiance.

By the way, if you’re still a little confused by how we got from there to here, this is what happened:  When Allistaire was first discharged from SCCA, everyone (as in myself and all the docs) were on board with the plan that if Allistaire’s chimerism tests were good, Allistaire and I would move home after getting her 7 days of chemo and we would just come back to Seattle each month for chemo and clinic appointments.  Upon our return to Seattle on October 21st, I was shocked to learn that the GVHD docs wanted us to stay through one week beyond the end of Allistaire’s steroid taper because of the concern of a possible GVHD flare.  I was incredibly disappointed and frustrated that this caveat had not been mentioned or discussed.  Obviously I worked through it and willed myself to submit to the wisdom of the docs who simply have Allistaire’s welfare in mind.  But I did request that rather than waiting until November 11th to be seen, perhaps we could have the doctors check in on Allistaire the week prior.

On Monday, 10/28, Dr. Pollard said that Allistaire looked like she was doing great and she suspected that the SCCA doctors would let us go home after our appointment with them two days later.  I had slowly begun the process of sorting through all the stuff we’ve accumulated over the last 8 1/2 months but I was certainly not in full-blown packing mode.  Dr. Pollard graciously offered to email the SCCA docs to see if she could get a more official approval of our plan to leave so I could proceed with packing.  At that point I was challenged to come up with some creative explanations to Allistaire as to why everything in every cupboard in the kitchen had been pulled out.  Dr. Pollard promised to email me on Monday, even if it was late.  Monday passed with no news and then most of Tuesday as well.  By 2:30 on Tuesday afternoon, I could wait no longer and called the clinic to ask Dr. Pollard for any update.  At 5pm on Tuesday, 10/29, Dr. Pollard left a message saying we had a green light.  I promptly called my parents and asked if they could come over the next morning and help me clean the apartment and load up their car with stuff that I would need again for our next Ron Don stays.  I called Homecare Services and arranged supplies to mailed to our house in Bozeman.  I called the pharmacy and at just before 11pm that night I picked up all of Allistaire’s med refills.  I packed like a mad woman.  I loaded the car.  I dreamt of where I was going to fit everything – what should I take and what should I leave behind.  I woke up Wednesday morning and packed and my parents arrived and we loaded more and more stuff out the door.  At 12:30 pm Allistaire and I left to go to her SCCA appointment where Joan, the P.A., was impressed with how great Allistaire looked and  gave us her blessing to depart for home.  By 3pm, we were driving away from a cleaned apartment, my parents in their loaded down car and off toward the east, to Spokane for the night.  We left on our 100th day in that Ron Don apartment, over 250 days since we’d left home.  On Thursday morning, we began the last haul for home and arrived in Bozeman just in time to surprise Solveig at school and head down Main Street where the whole town comes out for some trick-or-treating.  When Allistaire’s transplant had been scheduled in June, I counted the days and had hopes that we would return home in October.  When her disease was still present post-transplant, that seemed no longer possible.  But, on October 31, 2013, I walked through the door of my home with my sweet little girl, hopefully still in remission, but determined to soak up and enjoy our time together, no matter how long or short it may be.

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Curve Ball and Splendor

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It’s been a while and it has been a full time.  A lot has transpired.  Here it is in brief:

On Thursday, October 3rd, Allistaire was officially discharged from Seattle Cancer Care Alliance by sweet Dr. Delaney and her team.  In sum, all the Day + 80 testing showed that all of Allistaire’s organs are in good working order and that they have determined that she does not have chronic GVHD (at least at this point).  These are two monumentally wonderful things!!!!

The big shocker of the meeting was the idea that a second transplant may not end up being necessary.  In Dr. Delaney’s view, if Allistaire were to continue to remain in remission through the end of the 6 courses of Azacitidine chemo, they would not recommend a transplant, as the risks would not, at that point, outweigh the possibility that she may be in a long-term remission.  She went through each of Allistaire’s bone marrow tests starting with the one just prior to transplant.  In her view, Allistaire probably did not relapse post transplant, but rather simply still had minimal residual disease.  Apparently this is a better scenario.  She said that while the Day + 28 marrow showed zero percent, there were also relatively few cells, which is common at that point post transplant.  Had Allistaire been in remission prior to transplant, the Day 28 marrow would have carried more weight as truly being an accurate zero percent (no one cared to mention this nuance to me back then).  Dr. Delaney described how there is a delicate balance of immune suppression where enough must be given at the time of transplant in order to prevent rejection of the graft (new donor cells) but then, as the donor cells engraft, to also prevent the graft from outright attacking the host (Allistaire).  The new cells need time to get established so you don’t want too much immune suppressants but you must again, protect the host body from assault by the new cells that recognize Allistaire as foreign.

Once Allistaire’s cancer was detectable, there was the increased need to pull back on the immune suppression as much as safely as possible in order to give the donor/graft cells as much ability as possible to identify and destroy the remaining cancer cells.  What Dr. Delaney hopes, and believes is possible, is that we have hit this sweet spot where the transplant wiped out the vast bulk of her disease, and now enough time has passed for the graft to be fully established, give a little chemo to help clear the few remaining cancer cells, pull back on the immune suppressants more and hope to maximize the graft versus leukemia (GVL) phenomenon.  From the beginning (prior to transplant) , it was abundantly clear that Allistaire’s cancer would never be cured by chemotherapy alone.  We were always going to need that mysterious and beautiful GVL.  So it seems that when I was so emphatically told that Allistaire’s only chance of survival was to have another transplant, that was accurate in terms of all previous statistics.  Dr. Delaney made the statement that as far as she knows, Allistaire is the highest risk patient they have ever transplanted.  I assume this means high risk in terms of amount of disease given the enormous amount in the marrow in addition to the fact that it was in eight additional places in her body outside of her marrow.  Allistaire is on a road in which there are no numbers to predict her course – pretty exciting, terrifying and total and utter gift!

So today Allistaire has long been off the immune suppressant Tacrolimus, and is currently tapering her steroid, prednisone.  So far she is doing well with her taper which, assuming she has no GVHD flare, should end on November 2nd.  At that point she would only be receiving 3ml of Prednisone every other day.  I’m not sure how long this would continue before a further tapering. As the taper nears the end, however, the risk of a GVHD flare increases because of the more substantial decrease of the immune suppressing steroids.  She is scheduled to be seen by the Continuing Care Clinic at SCCA one week after the end of her scheduled taper.

As of today, Allistaire has completed four of the seven days of this third round of Azacitidine.  She is handling it extremely well, and now that I am giving her more consistent Zofran for nausea, her tummy seems to be doing better than before.  For some reason, I have foolishly had the mentality that because she is not in the hospital, she does not need as many meds.  This is absurd.  This time around I’ve been giving Zofran about every 8 hours, as they do in the hospital, and she has yet to throw up and so far is still eating rather well.  Her blood counts continue to do spectacularly.

The two looming issues this week has been her heart function and the much-anticipated chimerism tests.  On Tuesday morning, she had a surveillance echocardiogram which showed a drop in her heart function since the last echo in September for the Day + 80 workup.  There was a drop in her Ejection Fraction from 53 to 50 (55 being the low-end of normal and a drop in her Shortening Fraction from 31 (her base-line before diagnosis) to 25 (28 being the low-end of normal).  Our savvy Dr. Gardner, got us into the cardiologist the next day.  Apparently it usually takes two months to get in on the schedule.  We saw cardiologist, Dr. Sebrina Law who took copious notes.  In summary, she feels that Allistaire has very mild chemotherapy induced cardio myopathy.  Her EKG, which measures the electrical components of her heart, was perfectly normal.  Additionally, her heart is not dilated, nor does she have any symptoms of decreased heart function: lack of appetite, lack of energy, shortness of breath.  Because there is no dilation nor symptoms, she chose only to increase her enalapril dose to the maximum of what her weight allows, which only bumped it up an additional .5 ml twice a day.  She said they will just follow her and want to see her again in three months, though I’m guessing, Dr. Pollard will want her in much sooner than that, as it is typical to get echos done after each round of chemo.  I was very thankful that her heart issues are mild and have the possibility of being reversible.

People are always asking me how I am, how are things going?  They will comment ceaselessly, that Allistaire looks SO good!  Every time these two things occur – this question and this comment – I cringe.  How do I answer how I am?  It’s complicated.  I’m often doing great on one level, but there is a way in which something is so fundamentally wrong.  And Allistaire has looked great by all external measures a hundred times and often there was cancer lurking, which if not stopped, will, without question, eventually take her life.  So for me, the last several days have been lovely with all the splendor of reds and oranges and yellows, foggy mornings and brilliant crisp afternoons.  They’ve been quite busy days with chemo every morning and then multiple additional appointments and other events.  But lingering in the back of my mind is the question of those chimerism tests.  Every month a chimerism test is done to determine the percent of donor cells in her peripheral blood versus the percent of her own cells.  Apparently, it is common to only do bone marrow tests every other round with this chemotherapy regimen.  So Dr. Pollard and I agreed that this time, at the end of round 2, we would only do a chimerism test.  The thought is that a chimerism test can give a pretty good idea if something is going wrong in the marrow.  You could conceivably have a small amount of cancer in your marrow that would not show up in your peripheral blood chimerisms, but if anything significant were happening, it would show up with that test.  At this point, this chemo is Allistaire’s only option for treatment.  Were she to have over 5% or more cancer in her marrow, she would then be potentially eligible for few different clinical trials.  This means that if there is only a small amount of disease, we would only have the choice to stay the course with the Azacitidine.  What this comes down to is a bit of willful ignorance.  Why know if there is some small amount of cancer if there’s nothing you would or could do differently?  Why not have a chance to have one more month a little less burdened?  I had a horrible dream about the chimerism tests last night.  I dreamt Dr. Pollard called and said they were 84% and I kept yelling out that was bad, so very bad!  This morning as Allistaire was getting her chemo, I mentioned to the nurse my anxiousness for those results.  When she couldn’t find them herself, she said she would ask Dr. Gardner to check to see if they’d come back.  Dr. Gardner (the doctor who sat down with Sten and I and gave us Allistaire’s original diagnosis), walked to our little infusion room with a bright green sticky note.  All three cell lines are still 100% donor.  Oh Father in heaven, what a relief, what a joy!

In between being discharged from SCCA, returning to the care of Dr. Pollard at Children’s and beginning this next cycle of chemo, Allistaire and I had some seriously packed joyous days.  October 9 -11th my beloved sister-in-law, Jess, and little nephew, Per, came for a visit.  We had a wonderful time!  I cherished Jess’s teary eyes as she sat on the couch at Ron Don and relayed how being present with us helped her to understand the reality we’ve been walking.  It was a gift to me – her compassion, empathy and presence.  And of course, Allistaire was thoroughly excited to have Jess and Per around to entreat into playing her silly games.  Then on Friday night, October 11th, the four of us flew home to Bozeman, thanks to the generosity of one of my dear friends.

Allistaire and I had nine fantastic days at home, enjoying family and the splendor of the changing of seasons.  In Bozeman, the transition from summer to fall to winter can be quite speedy.  The cottonwoods and aspens had all turned blazing oranges and yellows and there was intermittent snow and bright blue skies.  We just had such delightful days at home – Allistaire and Solveig dancing, coloring, pretending to be cats, playing outside together.  Solveig and I spent a day together and Sten and I had a day to go hiking up Middle Cottonwood and then walking around downtown a bit and enjoying a nice meal.  All in all a wonderful time.  Allistaire also had one clinic visit with our local pediatrician, Dr. Ostrowski and then we had to go down to the cancer center to get labs drawn.  It was strange and lovely to see the sign on the window saying that the Bozeman Deaconness Cancer Center was partners with Seattle Cancer Care Alliance.  We had to wait nearly four hours for labs and I was getting pretty nervous but thankfully everything was great.  In addition, to all the other great times, I was able to go to my home church twice and to my old bible study, BSF, once.  It was uniquely wonderful to once again be able to worship, take communion, hear the Word of God taught and simply be with so many other believers who have loved us and prayed for us so faithfully.  It was all pure gift!

So home – home is a place where not every single part of our lives is directly linked to cancer.  At home there is invigorating blue skies and cold, where you notice things like stars and wind ruffling aspen leaves, and the brightness of moon setting as the sky turns pink in the Eastern sky.  At home I am mom to two girls and I clean and cook and organize.  At home I am wife and I don’t sleep alone in a queen size bed though some mornings I’d stretch out my arm, searching in the dark to find my husband, only to remember, oh yes, he’s gone up on the hill behind the house to hunt for elk.  Home is where we are sisters, Allistaire and I – she to Solveig and I to Jess, Jo and Jessica.  Home is all four of us sitting at the kitchen counter eating pancakes and soup and the whole family gathering together in a swirl of conversation and amazing food and the best sangria on earth.  Home is where I tend my ferns and other myriad of plants and where Sten and I sit in the evenings watching Solveig and Allistaire dance like the craziest two wild cats.  Home is where my Father-in-law hits a bear driving to the airport and where his eyes tear up as he holds Allistaire, listening to her every word.  Home is where relationships are complicated and priorities are blurred.  Cancer is no longer the only defining facet of your life.

For those of you who have looked at me as something extraordinary, you need not.  For those of you who have thought, “I couldn’t do that,” yes you could.  Here’s the deal – ordinary life is unbelievably complicated and often its ordinariness, its normalcy, its constant, predictable cycles and routines make it harder to have clearness of vision and courage and inertia to break out of patterns.  Cancer helps with that.  Cancer rips you right out of comfort and security and predictability.  Cancer demands that you never take your eye off of it.  Cancer is an obvious predator.  Do you think I had choice?  Did I yearn to know God more?  Yes, Yes, Yes, but I could never have chosen to cut off my arm and gouge out my eye.  Yes, I am wounded you see.  I have been given sight at great cost.  I once said, out-loud, that it seemed noble to have a dying child, as I grumbled and groaned internally about a private, but devastating situation.  Not two months later, I did have a dying child.  It’s not noble.  It’s brutally hard, but so is being a wife, a mom, a sister, a daughter, an employee, a citizen of these United States, a human on this globe, a child of God.  Cancer allows me the luxury of setting aside nearly all other priorities – when there is a hand gripping your throat, cutting off your air, you find yourself unpreoccupied with what color you should paint the trim or what to make for dinner or if you should put more money away for retirement, what to do if maybe your blood pressure is a bit too high or what’s happening in Syria or those being sex-trafficked in Moldova.  There is a knife about to slit your throat and all your energy and attention if funneled into preserving life.

Thank the Lord, ordinary life is not lived at this high pitch.  The sounds and colors are a bit more muddled.  I don’t have the answer for you.  I guess, just know that I am no different from you and though our struggle for Allistaire’s life, and my struggle to submit my idea of how I want life to be, to the perfectly glorious plan God has in store, is perhaps more public and/or more seemingly dramatic than the life you might find yourself living, there is not less at stake.  I guess at the core, I find it extraordinarily challenging to live a life with eternity in view.  I am constantly lulled and swayed by the things that are ordinary and common to desire in this life.  I am brain washed by the standards of what is considered a “good” life.  God’s ways are SO NOT our human ways.  The things He cares about are so utterly different from much of what I spend immense energy, emotion, time and resources pursuing.  It is staggering how much effort I put toward accomplishing what I want.  But you see, again, things are not so clear, not so black and white.  There are plenty of overlaps with God’s many blessings and our desires.  We are chimeras ourselves.  We are both made in the image of the One True God and so yearn for that which is from Him, and we are fallen, forlorn creatures, bent on our own simple, earthly hopes and desires.  We are eternal and magnificent and depraved and broken.  The hope of eternity through Christ Jesus, is that at last, that one beast will be put utterly to death and only our glorious, made-in-the-likeness-of-God selves will be manifest.  Then turmoil will cease and life and peace will prevail.

My Aunt Jennifer found this prayer and ask that I post it to bless others.  It is simple and profound.  I wish cancer on no one, but I do hope for there to be a way to gain what is received in the stripping and tearing of one’s life with serious illness.  Much has been taken – taken in a flash and wrestled away from a white-knuckled fist.  And abundance has overflowed and life has sprung up.  This was written by a dad who lost his son to neuroblastoma after a 6-year fight, something I cannot bring myself to imagine.

A Cancer Prayer by Stephen R. Chance

Dear God, we have prayed often for you to rid our child’s body of cancer and never let it come back.
We have prayed often for you to spare his body the harsh effects of the treatments he must endure.
We have prayed for mercy and strength. But we have not yet prayed for the things about cancer we would like to keep.
Please let us keep the love that has been laid bare and that binds our family, our friends, and our community.
Please let us keep our preferences to be together.
Please let us keep our appreciation for simple pleasures.
Please let us keep our ability to not sweat the small stuff.
Please let us keep our tolerance for each other’s needs.
Please let us keep our patient smiles responsive to normal childhood conflicts rather than the irritation that so easily ensues.
Please let us keep our tendency to treat others tenderly knowing that we don’t know all the heart breaks they have felt.
Please let us keep the ease with which new acquaintances become good friends.
Please let us keep our enhanced appreciation for nature.
Please let us keep our motivation to live vigorously now rather than planning to live later.
Please let us keep our calling to help others fight cancer with better weapons and smarter generals.
Please let us keep our need to reciprocate the wonderfully kind favors we have received.
Please let us keep the strength to press on when faced with other illnesses, deaths, and human tragedies.
Please let us keep You at the center of our lives during good times, too.
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Ruts

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IMG_5022I’ve really only had one, true social work job, but it was my dream job.  As I lay down to bed on the day that I applied to be a case manager with Seattle’s Union Gospel Mission, I could not go to sleep – so giddy was I.  The only thing that compared were those last few nights before Christmas, when I would sleep on the top bunk in my brother, Patrick’s room, the glow of Christmas lights reflecting on the ceiling.  Being a case manager was just exactly what I wanted to do.  I loved the holistic nature of social work and delighted in the idea of sitting down and setting goals with my clients and advocating on their behalf as needed.  Somehow that role seemed to pair my scientific, analytical mind with my heart of compassion.  While I was not the 45-year-old married black woman with kids my supervisor was hoping I would be, I was very motivated.  However, one of my least favorite responsibilities as case manager, was having to check the apartments of the ladies in our program.  It was a transitional housing program for homeless women and children, and each week I had to enter each apartment and go through a list of items to make sure everything was being kept up. On one such afternoon, I stood, clip-board in hand, and cast my gaze about the living room and kitchen, being eyed by the lady of the house who did not seem pleased.  I came to learn that she did not appreciate my use of the clip-board, it was a “trigger” for her.  The truth is, I scoffed at that.  I really need the clipboard if I’m going to write on the paper, I thought.  What’s the big deal?  Let’s just say that learning about PTSD (Post Traumatic Stress Disorder) triggers was all new to me.  I had the, “get over it,” attitude.  That was, until I entered the bathroom of a tall building downtown one day, on my way to a meeting.  As I opened the door to the bathroom, I was caught off guard by a smell I could not place, but immediately seemed delightful to me.  I was smiling and I didn’t know why.  I sat on the toilet trying to place the smell.  It wasn’t actually a particularly nice smell, but so unbelievably familiar I realized.  And then it hit me – it was the exact smell of my Nana, well not her so much as whatever powder she used.  And that is when I realized that I had gifts I have never calculated.  How many times have little things “triggered” joyous memories in my life?  Something as small as the sound of a chain saw – that brings me delight like I can’t tell you.  That is the sound of my growing up with my dad in the back yard cutting wood.  For me that is an entirely wonderful memory and I still to this day repeatedly derive joy from that sound that causes memories to come flooding back.  What I soon realized, is that for many of the women in our program, their life was replete with awful memories and a whole series of triggers that brought the terror of past days, flooding back with vengeance.  For this particular woman, I was not the case manager holding the clip board checking her apartment, I was the husband that beat her and abused her so viciously that she had fled for her life with her son, as far away as she could get – she hadn’t cleaned their home well enough, and she was going to pay.

In the case of PTSD, a traumatic event or events occur which elicit powerful physiological and emotional responses.  These responses are often appropriate given the event.  However, once the traumatic situation has passed, there may still be “triggers” associated with the trauma that elicit a similar intense response, only now these responses hinder a person’s ability to live life.  A person’s response to the trigger is automatic – there is no thinking through the situation and how to respond, there is only instantaneous reaction.  So I’m clearly no expert in PTSD, but I have come to see that whether or not I have any official diagnosis, there are things that just set me off, and I just respond in a predictable way,  There are roads I have traveled so often, they are gouged out with deep ruts.  There are ways that I respond that have been repeated so many times, that there has become an entrenched pattern.  My response is not thought out and carefully considered, it is automatic.  I liken it to a freeway.  A big wide smooth road has been laid out which allows you to go really fast.  Or it is the drive home from work that you’ve driven so many times, you sometimes wonder how you got there – you were not even conscious of making the turns – having set out, you simply arrived at your destination.  I’m guessing there are both psychological and neural/brain science reasons for this phenomenon, but I see in myself too, sinful patterns.  There are ways that I think about things or respond to things that are deeply entrenched in me.  Some people defend themselves the millisecond you begin to bring something up.  Some people immediately shut down in a group setting.  Some people are quick to blame others, and some people are quick to heap the blame on themselves.

A powerful pattern in my own life is perfectionism and self-sufficiency.  Nearly every single thing I approach, is looked at, both consciously and unconsciously, from the view that what must be done, must be done with absolute excellence and additionally, I should be able to accomplish that.  So was it my parent’s fault for instilling a good work ethic in me?  Was it my 9th grade geometry teacher, Mr. Stroud, who would lean on the over-head projector, big glasses at the tip of his nose, and repeated, “Strive for Excellence.”  Is it the sin of pride?  What I know, is that I am made in the image of the One True God and am thus deemed glorious and I am a fallen, broken, sinful creature.  The good and bad, the beautiful and the ugly, are all mixed up and intertwined.  My tendency toward perfectionism and self-sufficiency has accomplished a lot of wonderful, really great things in my life and comes in handy every single day.  It is also my undoing.  It is also the source of my absolute raging angst and unrest.  At my core, I still believe I should be able to do everything and I should be able to do everything really, well.  And when all my efforts fail and are insufficient, I am just straight-up mad.  I mean I tried really hard, and it still didn’t work!  I distinctly remember as a teenager, thinking that surely if I just kept trying every angle to convince my parents to let me do something, it would work.  If I just kept pushing, I could make my way through.  perseverance, strategizing – they can be great things, but sometimes they are obnoxious and sometimes it’s really just manipulation.  Sometimes seeing the big picture and a hundred steps down the road will get you a really great paying job at a big company and sometimes it is the very “strength,” that becomes your weakness because a poopy diaper equals the death of your child.

Up until last fall, when I heard the phrase, “a gentle and quiet spirit,” my initial gut response was always, “No thank you!”  For me that phrase was equivalent to all the weak, push-over, meek, church ladies I had ever known.  You know the ones who still wear the giant glasses, no makeup and spray their bangs up?  The skinny ones wearing calico dresses and are the pastor’s wives?  The ladies who think lace and mauve are the best?  Gross, just totally repugnant to me.  I was a tom boy.  I’m the one who carried the 50 pound box of nails up the hill, over and over again on our mission trip in Papua New Guinea.  I might not have the best hair but I know not to do that to my bangs.  And I am not going to sit back and never speak up.  At my core I believe in, “buck up!”  I relish my Irish heritage and brawling, partying loud mouths make sense to me.  But you know God, He likes to sneak things up on you.  I think He just relishes making you want somethings you said you’d never want.  He’s done this to me before.  I moved to California, became a Resident Director and married a younger guy – three things I had emphatically proclaimed would never be.  And so it was that last fall the Lord planted those words, “a gentle and quiet spirit,” in my heart.  I found, mysteriously, that I actually wanted that.  But the Lord was opening my eyes to the beauty of those words.  He began to show me that gentleness was an outflowing of a person who had been broken – who had come to truly know their fallenness, their sinfulness, their finiteness.  They themselves had come to be in a position of needing to be dealt with gently, compassionately, so broken were they by things out of their control and by their own failings.  And perhaps the quietness of spirit too, comes from that same brokenness, that same deep-seated utter awareness that I am human, and I really do need God.  I am in desperate need of God because I see how utterly wretched my sin really, really is.  I am in desperate need of God because I have seen that I am not in control of my circumstances.  There is a way in which the words of scripture become known, not by the mind as with memorization, but with the gut, with the core, with the fundamental innards of who we are.

On the night I wrote the last post, I cried out to God.  “Lord, you HAVE to help me!”  Yes, I am fully aware of finiteness, my sinfulness, my weakness, my insufficiencies and I see you Lord as the One in control, as good, as loving, as merciful.”  I do embrace the truths of who the Bible says I am and who God is and both my need for Him and His generous, gracious meeting of my need in Christ.  I know a whole lot of Bible verses and I actually believe them, and it is not enough.  “Lord, show me in practical, tangible ways how to live out the truths of your Word I hold so dear.  “Father, please create in me a quiet heart, help me to truly rest in You.  Help me to learn the practice of incorporating the hope of your promises into the tangible activities of my life.  Lord, how do I do that?  I know it is by your Spirit being at work in me, but show me, show me how to rest.  I cannot go on this way, in this raging swirl of anger and sorrow.”

It was 1:30 in the morning and I lay in bed with the lights on.  I was blasted tired.  But for some reason I thought that would be a good time to pick up the stapled papers a friend had sent in the mail.  I’d had the papers for probably a week and a half and had opened them, noting they were some sort of Bible stuff that I’d have to look at a time when I was in the mood.  I wasn’t so sure I was in the mood, but picked them up anyway.  “Peace, be still”:Learning Psalm 131 by Heart,” is the title, an excerpt from David Powlison’s book,”Seeing With New Eyes.”  “Peace, be still,” seemed a good start.  I began reading, “This person (David who wrote Psalm 131), is quiet on the inside because he has learned the only true and lasting composure.  He shares the details of what the peace that passes understanding is like.  Amazingly, this man isn’t noisy inside.  He isn’t busy-busy-busy.  Not obsessed.  Not on edge.  The to-do list and pressures to achieve don’t consume him.  Ambition doesn’t churn inside.  Failure and despair don’t haunt him.  Anxiety isn’t spinning him into free fall.  He isn’t preoccupied with thinking up the next thing he wants to say.  Regrets don’t corrode his inner experience.  Irritation and dissatisfaction don’t devour him.  He’s not stumbling through the mind field of blind longings and fears.  He’s quiet.”

At that point I laughed out loud.  “Really God?  You’re funny.”  I had just minutes before specifically asked for tangible help learning how to live life with a quiet spirit and right in front of me was a description of a wound-up person that sounded a lot like my noisy, raging heart.  Right there was something to begin the process of learning to rest in the Lord.  Thank you God for hearing my plea.  The next paragraph reads, “Are you quiet inside?  Is Psalm 131 your experience too?  When your answer is No, it naturally invites follow-up questions.  What is the “noise” going on inside you?  Where does it come from?  How do you get busy and preoccupied?  Why?  Do you lose your composure?  When do you get worried, irritable, wearied, or hopeless?  How can you learn to regain composure?  Do you need to learn it for the first time?  We’ll get to these questions, because they are what Psalm 131 answers.”

I need some STRATEGERIE!  When I was a kid I read a book about Pocahontas and the thing I remember most was the morning ritual the people had where they would greet the sunrise.  I have always wondered, “Lord, how, from the moment my eyes open, do I orient my heart and my day to You?”  Because I know, if I don’t address the direction of my heart and thoughts immediately, they are simply off and running.  Within 5 seconds of beginning my day, I am already pacing through my list of things to do and strategizing how I am going to accomplish everything and be everywhere I need to go, on time.  Again, this pattern of mine, has enabled me to accomplish a lot in my life.  But it’s also robbed a lot from me.  This pattern also is saturated in worry, and pressure.  I expect a lot of myself, and I don’t have a lot of grace for failure.  When I fail, I should have tried harder.  I hold myself to an impossible standard.  The saddest part of it all is that it not only hurts me, it hurts the people around me.  I remember absolutely bellowing at Allistaire last winter when she decided to take the long way down the hill to the car rather than the more direct stairs.  “We’re late!” I lashed as I hurriedly and roughly forced her into the car seat, and for the next five minutes, preached on the virtues of speed and the importance of not being late, blah, blah, blah.  And for the next 20 minutes I seethed that we were late again and seethed that I was such a wretch and Allistaire cried in the back seat.  Her path, versus my preferred path to the car, might have a 30-60 second time delay.  So you see, it’s not just cancer that has me all wound up.  Cancer just amps up my already underlying issues.  My reactions in the face of cancer are exponentialized versions of my normal patterns.  It is all just makes me sick to my stomach and just heaps on more guilt and more despair and I am desperate for the Lord to show me another way to live.  How do I live the life of rest in my spirit that I know you have for me?  How do the truths of your word more deeply and thoroughly direct my heart and actions?  There are so many evidences in my life of how far the Lord has brought me, but boy am I often overwhelmed at how far I have to go, at how entrenched are my patterns of sin.

So ultimately, the answer to Romans 7 is, “wretched man that I am, who will save me from this body of death?  Thanks be to God through Jesus Christ our Lord.”  I take great joy in the hope of knowing Christ, but I was still asking the Lord for some tangibles.  “But what do I do, Lord?”  There is a lot to contemplate in Psalm 131 but the thing that stuck out to me that night was this, “Lord, my heart is not proud, and my eyes are not haughty, and I do not go after things too great and too difficult for me.”  Those words just burst off the page to me, “I do not go after things too great and too difficult for me.”  I have been trying to keep Allistaire alive!  Too great and Too difficult for me!  Now, I know rationally that I have no ability to determine if Allistaire lives or dies, but I live out my daily responsibilities with the absolute weight of life and death.  Why am I so angry with Allistaire when she doesn’t eat?  Because it is all tied up with the fundamentals of keeping her alive.  Every single responsibility gets directly linked to the weight of her possible death.  I get it, I get it, I know I just need to calm down, but how?  The Lord showed me that He will help me to see what are the responsibilities He has given me.  He said He would help me sort through what is my task and that of the doctors, and what is His.  Rather than approaching meal time with the weight of her life, or the even lesser, but still awful weight of potentially needing a feeding tube, the Lord can show me what He has entrusted to me.  My responsibility is really as simple as purchasing and storing good food, preparing it for her, providing a reasonable amount of time to consume the food and encouragement to do so.  That’s it!  I can’t make Allistaire eat!  What a novel idea.  In that moment the Lord freed me up to choose to look only at what He’s given me.  When the diarrhea comes or she throws up after an hour and a half of eating dinner, what is mine?  What has the Lord given to me to do?  I rub her back and speak kindly to her as her entire dinner falls into the trash.  I clean her up and give her a new diaper.  I make sure I put on diaper cream so her little bottom won’t get raw.  I make a note of how frequently she vomits or poops and in what circumstances.  I am faithful to convey the information to the doctors.  They determine what to do with the reality at hand.  It’s not my responsibility to determine if this is GVHD or a lingering virus.  It’s not my responsibility to weigh the pros and cons of immune suppressing steroids.  It’s not mine to determine if this cancer will take her life or not.

For the past four days I have not yelled at Allistaire.  Really, I haven’t, I mean at all.  And this, is literally, a miracle, an act of God working through His Spirit in my heart.  This one tangible step is helping me to practice the truths of scripture.  It is a beginning.  It is a gift.  The last four days have been quite lovely with Allistaire and I have felt much more light-hearted.  My spirit’s angst has been smoothed down.  I’m going to keep asking Him to reveal to me those practical ways that will help form new patterns and paths in my heart and mind.  My flesh over the years has ground down deep ruts – habits of heart and habits of actions. I am weary, sick to death, of those destructive paths.  I want to go the way of the Lord.  I want to know, in practice, what it is to walk with Christ.  How I long for the day, when it can be sincerely said, Jai is a woman with a quiet and gentle heart.  That would be no less of a miracle than Allistaire being cured of cancer.  Lord hear my prayer.IMG_5042 IMG_5049 IMG_5051IMG_5029 IMG_5033 IMG_5034IMG_5020