Monthly Archives: May 2014

Magical

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This is the verse Kelly later texted me:

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

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GOOP or COP or whatever ya wanna call it

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IMG_8567Seems like we should be further along with this whole process.  A lot has been accomplished but still, no firm diagnosis.  Allistaire did great with last week’s endoscopy, BAL (lung wash) and lung biopsy.  Thankfully her remaining IVs were able to be put in after she was put to sleep with a mask so she didn’t have to go through that terror.  Nearly every “traditional” location was used though in those three days.  Unfortunately, you can’t typically draw out blood from an IV so that means a poke in another spot.  Waheed, the roving IV-Team guy, assured us he’s an expert in drawing blood from veins in the head – I think we’ll pass.  The only wee complication from the lung biopsy was a small pneumothorax which is an air bubble between the lung and chest wall that can occur as a result of the needle biopsy.  She had x-rays done on the portable x-ray machine one hour and several hours after the procedure to monitor it and because it was so small and didn’t get any larger, they were not concerned.  Were it to be a large one, a chest tube would have been required to drain off the air, otherwise you get a collapsed lung.  The one scare from my perspective (not the doc’s) was that her platelet count and hematocrit dropped slightly in Friday’s labs from Monday.  The platelets went from 220 to 188 and hematocrit went from 39.6 to 36.6.  These really are still great numbers and not a huge drop, but Allistaire’s platelets really never drop below 200 and her hematocrit likes to stay consistently up near 39/40.  I am always on the alert for a downward trend which hails the terrifying possibility of relapse.

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

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

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

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

I was so anxious about this trip to Seattle because I feared we would become entrapped here.  That’s just what happened.  Fears confirmed.  I am not actually crazy and no, she’s not fine just because she looks fine.  But, so far, it looks like we might escape true imprisonment.  I leave that fear for June and that looming bone marrow test.  I will tell you, it was the strangest experience to go back to the Cancer Unit – a place I have only visited once since Allistaire’s discharge last July and a place she has never entered again until last Thursday.  It is a clashing of homecoming and revulsion.  There were SO many faces that are just dear, dear to my heart – nurses and the Unit Coordinators and Natalie from the bone marrow team.  Amazing, incredible people who have become painfully and delightfully woven into our lives grace those halls and rooms.  The light and colors there are beautiful.  I may have nearly forgotten how to work the fancy new TVs but I have not forgotten the deep, pervasive sorrow and fear of life in that place.  You do not ever get over hearing a baby crying on an oncology floor.  Babies should not have cancer.  As I lay in that strange fold-out bed couch thing in the early morning, I remembered the countless mornings, nearly 250 times, I rose to meet numbers on a page, those blood counts, that decreed the course of our lives.  And I prayed and prayed that this would be the last time I lay on one of those beds. I have not figured out, in all this time, how to love Allistaire less.  Rather it seems I cannot get enough of her and as she grows and times passes, I love her more and more.  My grip on her seems no less.  Help me to love you more then Lord, I cry out.  Help me more and more love you and hope in your goodness and your plan for my life.  Help me God Above to put my hope and faith and trust in your definition of life and victory that so very far surpasses mine.IMG_8499 IMG_8503 IMG_8517 IMG_8519 IMG_8521 IMG_8534 IMG_8535 IMG_8540 IMG_8553 IMG_8556 IMG_8589 IMG_8600 IMG_8606 IMG_8607 IMG_8622 IMG_8623 IMG_8628 IMG_8646 IMG_8720

 

 

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