Monthly Archives: December 2014

Christmas Gift


IMG_2201While I waited for Allistaire to finish up with her PET/CT on Monday afternoon, Dr. Gardner called saying, “I don’t have PET scan results yet.”  I laughed and said I knew that because she was in the PET scan at that very moment.  “Well, I wanted to call and tell you, I couldn’t wait, Allistaire has zero percent leukemia by Flow Cytometry!”  I was flabbergasted and overjoyed.  I just couldn’t believe it.

Later that afternoon she called back to say that there was significant improvement on her PET scan.  Out of the six original locations, two had disappeared completely (right arm pit lymph node and right groin lymph node), two had reduced significantly (right arm and right thigh), her left hand looked unchanged but the radiologist wasn’t entirely sure it’s a lesion.  The final spot on her left thigh looks brighter on the scan which means larger – a total size of about 1cm.  All in all her chloromas have shown great improvement.

This means she is in a great position to move forward with transplant.  As I explained previously, she can’t go directly to transplant but must have “bridge chemo,” while we wait for the timing to be worked out with the donor for transplant.  At this point, Dr. Bleakley says it could take four to six weeks before full approval from the German and U.S. sides are complete.  So one of the considerations with what chemo to give until transplant is timing.  The other most significant factor is what is best to keep her disease at bay.  Because of the aggressiveness of Allistaire’s disease, Dr. Gardner is concerned that just doing Decitabine alone may not be enough.  Because we have the time, Allistaire’s body is still in great condition and it has already worked, it’s been decided we’ll move forward with a second round of the DMEC which she just had.  Not only does the timing of this round. which takes 39 days to complete, (7 days of Decitabine, four days off, 28 day cycle of Mitoxantrone, Etoposide and High-dose Cytrabine covering the first five days) work well with the time needed to make arrangements for transplant, but when this course has been given in the clinical trial it has been given in 1 – 3 rounds.  The reason for this is in part because the way in which Decitabine works actually progressively becomes more effective.  What this means is that in the first, even second round, you may not see the full potential of Decitabine.  This is exciting to know that if it has already worked, it could potentially become even more effective against her remaining cancer.

One amazing thing to note is that this combination of chemos was not available when Allistaire relapsed the first time.  It was not even an option available to her.  What if this protocol had been available a year and a half ago and she could have had the more intense transplant planned for her had she been in remission?  Maybe one transplant would have been enough.  This illustrates how crucial the need for cancer research is.  For we parents, it feels like we just need out kid to hold on long enough – something new may open up, some new discovery that will make another open door for them.  There is a thrilling buzz in the air.  Things are changing and the hope for radically different, more effective, less damaging treatment is really on its way.  I look forward to the day when we can look back at what Allistaire has gone through and see it as archaic and brutish compared the sophistication of the treatment that is coming.  Around the hospital there are life-size photos of various researchers at Seattle Children’s.  It was fun to have Dr. Gardner’s smiling face great us as we entered the radiology area on Monday.

Tomorrow Allistaire will see a doctor who will check her over primarily to give the go ahead for her to begin chemo.  Her ANC must be 750 to start chemo again and since it was 742 on Monday, I’m sure we’re good to go.  On Friday she will begin 7 days of Decitabine.  This is done outpatient so she’ll just have to go into clinic once a day.  By the way, she was discharged on Saturday morning and we are at Ron Don.  I guess I didn’t make that very clear before.  She will then have four days off and be admitted on January 6th.  She will have the other three chemos each day for five days (Jan. 6 – 10th).  It will be the same schedule as before where she will be inpatient for at least 28 days until her ANC falls and rises back up to 200

The end of this round should be about February 2nd.  By my estimates, she would have about a week off before conditioning begins.  Conditioning will probably be 1-2 weeks, and then she has the actual transplant.  My guess is that her actual transplant will occur sometime in the last week of February.  Once you have the transplant, she would probably remain in the hospital at least a month which means sometime in late March, or April she would be discharged from the hospital.  You are required to stay in Seattle for 100 days post transplant assuming there are no complications to require you to stay longer.  This puts us at June.  If all goes well, we should be able to return home sometime in June.  Oh wow that’s daunting.  June sounds forever and ever far away.  But you know what, if I get to come home in June with my child alive and thriving, that will be miraculous and well worth it!  I will have missed the entire long Montana winter.  But what a greeting to come home in the green of June.

I really am in elated awe of how well things have gone.  It is not important that Christmas be a happy time for us.  Last year on Christmas, Allistaire was getting chemo.  Three years ago, Allistaire was getting chemo.  But wow, is it lovely to be walking forward, knowing she’ll get chemo the day after Christmas, but we have hope!  Hope!  What a glorious thing – how it changes everything.  When I walked in the door of the Unit in early November, all I felt was a thick suffocating blanket of dread, of impending doom.  The ray of hope was the smallest sliver.  It feels much easier to walk back into battle knowing there looks like there might be a way through.  Being gone from home and from Sten and Solveig so very long feels quite sad.  But again, we do what we must.  Allistaire is worth it.

So this Christmas, I have so very much abundance to praise God for and simply delight in.  I’ve got a silly wild cat of a daughter who might just be able to keep walking forward through this battle against cancer.  On Christmas morning, Allistaire and I get to go pick Sten and Solveig up at the airport!  We have a whole week together and friends of a friend have made their house available so we have much more freedoms to have a great visit all together than when Allistaire is in the hospital.  And of course, we celebrate the birth of Jesus Christ.  Emmanuel. God with us.  Christmas has everything to do with cancer.  It is the very truth that God is with me and He is with Allistaire, that we can persevere in joy!  Oh how I am in constant need of God with me.

Merry Christmas friends!  And WOW – thanks for the prayers!  I don’t know how God’s sovereignty and His admonishment for us to pray all works together – it is mystery.  But you people, who honor me, you humble me and you honor the Lord with your persistent prayers.  Thank you!

By the way – the first picture above is Allistaire with Deb and Carrie – our Financial Counselors who constantly show us love and concern.  Turns out Carrie has an in with Santa and arranged an early delivery of a often recounted, very hopeful Christmas wish by Allistaire which was to have a doll with blond hair and a red and gold dress.  Wow did Santa get that one right.  You’ll also see Allistaire in a sweet belly dancer costume thanks to me dear friend Kai, who I have not seen in well over 10 years.  She and her husband are missionaries in Turkey.  What a joy to see her today.IMG_2210 IMG_2208 IMG_2206 IMG_2198



IMG_2153Ours is a sanitized fight.  I have only ever seen two insects on the Unit.  One would never know there was weather outside were it not for the horizontal planes of glass affixed to the side of the new building to contrast the vertical slices of blue, orange and green glass.  The rain hits the horizontal slabs, reminding the inside dweller that life does indeed exist out of these confines.  How I treasure those horizontal planes. Ours is a tedious, slow fight of absurd wealth.  The amount of financial, material, technological and human resources brought to fight for Allistaire’s life is staggering.  The light is bright with cheery images on the walls and flashes of exuberant color.  Countless groups come to the hospital and to Ron Don to make the season joyous.  Gifts flow in and in and in.  Everywhere smiling faces, time given to compassionate conversations and cheering us on and rooting for Allistaire.  Everywhere love and support.  Ours is a fight with so many allies.

In anticipation of the movie, “Unbroken,” coming out, I am determined to read the book first.  Much to my chagrin, I have not read much of history and this account of World War II in the Pacific gives me a much enhanced admiration and appreciation for our veterans.  How they faced the horrors common to war is awe-inspiring.  Their fight was poorly financed, poorly equipped and fraught with terrors I cannot begin to grasp – exploding flesh from countless weapons, disease, lack of medical care, sharks, exposure, starvation, torture.  In the same way that we press forward, unwilling to loosen our grip on life, they endured, they strove to hold onto life.  When Allistaire was first diagnosed, I kept thinking, if I was a Haitian mother, I would simply have a dead child.  There would be no fight.  There would simply be a swift succumbing to wretched disease.  So it has been throughout history and so it is in countless stories across this earth at this very moment – fights for life – lives cherished and infinitely valuable.

I went to bed Thursday night with the thought that we have been given SO much.  It is privilege to even have the opportunity to fight alongside Allistaire for her life.  Few have been given so much with which to battle, to persevere.  Who are we to have been so blessed?  The thought of what people must endure on this earth is utterly heartbreaking.  This fight tears constantly at my heart and yet, it is gift.  It could be so very different.  I went to bed more at rest in my spirit.  I woke less and still woke with heightened anticipation, but not terror.  I know the Lord is good and He sees the whole expanse while my sight is limited to a ridiculous degree.  Who am I to say what is best and thus what tomorrow should bring?  I keep handing her over to Him, entrusting her to Him, entrusting my heart and my life to Him.  Do as you please Lord.  You are my whole heart and it swells with longing for you Lord.  I live a dual anticipation – what will come to pass with Allistaire and looking for what the Lord will do.  The question of “why,” has never dominated my thoughts.  The earth and all that is in it is broken and it longs with eager anticipation for the coming of Christ to fulfill all His promises and restore and redeem.  The question of why rests far more on, “Oh Lord, why have you brought this wild, wringing sorrow into my life?  You are not an arbitrary God.  You are a sovereign, beautiful God, so what is your good intention for this road you are having me walk?  Why us, why now, why here?  Who will you put in our path?  How can I walk these halls and these days with face radiant because I HAVE seen you?!”  I don’t believe in accident.  I ask, “why,” because I am on the lookout for the beauty of what the Lord will raise up out of these days.

I actually experienced rest Thursday night and woke Friday once again in prayer, once again asking the Lord to orient my heart to Him – that He would fill my vision.  He has provided so abundantly, will I curse Him now if things do not go as I desire?  He is not a fickle God.  Is He not still the same good God when blasts appear on the lab sheet, when Flow Cytometry reveals an ugly diseased marrow?  I rose from my surprisingly comfortable couch bed to go and find our nurse, Nate, to discover what the Lord gave this day.  Allistaire’s ANC was 230 and there were zero blasts.  This meant a green light for her bone marrow test and ecstatic joy.  My joy was compounded when the doctor who did Allistaire’s bone marrow brought out a bright red, juicy sample of bone marrow to show me and tell me how good things felt in there, how simply good the sample looked.  On Friday they did a bi-lateral biopsy and aspirate, meaning they took sample from both hips in order to ensure sufficient sample given how hard it was to achieve last time due to the fibrosis.  Friday’s sample showed a changed marrow.  So, no blasts, rising ANC, platelets and hematocrit, a juicy fabulous sample of her marrow, lots of energy and no pain – as Dr. Gardner said, we have “guarded optimism.”

After I put Allistaire down Friday for her nap, I went to Ron Don and laid down, intending to read, “Unbroken.”  With lights of the room blazing around me I allowed myself to succumb to sleep.  Three naps in one week – what in the world?  A year could go by and I would not have typically had a nap.  Naps don’t work for me.  But an incredible exhaustion settled me flat on the bed and I dozed.  Perhaps I should be packing clothes for the next few days, but who could know which way the next few days would twist and turn.  I met with Dr. Gardner on Thursday afternoon to discuss three things: what was necessary to move forward with transplant, Denver and discharge.

As Allistaire’s ANC rose over the past week, the team started talking about discharge.  One might think that I should be excited about getting booted from the hospital but in fact “out there,” is a terrifying world I’m not excited to take Allistaire into – especially not now.  The docs pointed out that she has an ANC now which means she has a few lymphocytes (white blood cells) to fight illness.  Yeah, but perfectly healthy people with astronomical ANCs are getting taken down left and right with the flu and various other horrid colds and such, not to mention the Hand, food and mouth disease and Whooping cough going around Montana that could carry itself in the backs of our family.  Now more than ever, it is utterly essential to protect Allistaire from getting sick.  If the chemo has miraculously succeeded in getting her disease knocked down enough to move forward with transplant, then a very precise timing begins where two very separate lives must intersect at exactly the right moment.  The “conditioning,” (chemo and radiation), for transplant is timed in alignment with the donor prepping for the removal of their stem cells.  Cells are living organisms and can only survive so long outside the body and as conditioning begins for Allistaire, the process of permanently destroying her bone marrow has begun.  So, it is imperative that nothing stands in Allistaire’s way of walking each carefully planned step forward to transplant if we are given that option.  Something like RSV (a respiratory virus) is actually fatal in transplant.  She won’t have time to “get over being sick.”  The thought of leaving the hospital means she and I will be trapped alone in our room at Ron Don.  She can’t be in the communal areas and in order to get food I would have to take her with me to the grocery store which is a hot-house of hacking, sick people and kids.  Our best option is to go very early in the morning or late at night when we have a chance at steering clear of the sickos.

Then there was the issue of Denver.  So the bummer news is that the initial findings of the study, in the adult patients anyways, is not too impressive.  Only about 25% had a good response.  As Dr. Tarlock later told me, these aren’t such poor statistics for a single agent and likely this drug will be combined with other therapies in the future to have a far greater effect.  The truth is too, that this trial is Phase One, meaning they are only testing for safety, not efficacy.  The point being, it doesn’t seem worth it to send Allistaire to another state, another hospital, another group of doctors for a drug that isn’t a likely hit for her – unless there are no other options of course.  Dr. Gardner was going to see if she could contact the principal investigator and get a sense of how the pediatric patients were responding, as it could be quite different from in the adults.

By the way, here is yet another plug for pediatric cancer research – did you know that the NCI (National Cancer Institute) only gives 3-4% of its annual budget to funding pediatric cancer research specifically?  Here’s the problem, far fewer children get cancer than adults so it is not in the pharmaceutical companies financial interest to fund research to treat pediatric cancer.  So really, kids only get what eventually might trickle down to them from cancer research in adults which means much more time passes before there are any breakthroughs for kids with cancer.  Additionally, there are a number of cancers that only children get, like neuroblastoma.  Even AML, which is the most common form of adult leukemia, most likely has different origins and characteristics for children than in adults.  When a child is treated for cancer, their body is rapidly growing and every organ from the heart to the liver and brain are being poisoned from the chemotherapy and radiation.  Chemo targets the fast growing cancer cells.  In kids, all the cells are growing far more rapidly than in adults which means their healthy cells are much more vulnerable to the onslaught of chemo and radiation.  When an adult is cured from cancer, their life has been extended by and average of 15 years.  When a child is cured from cancer, their life has been extended by an average of 71 years.  So if the NCI won’t fund pediatric cancer research and the pharmaceutical companies have no incentive to do so, it means the real hope for children with cancer rests with the private donor.  Allistaire has benefited directly and significantly from research at Fred Hutch which treats adults as well and I will continue to root for them and seek to raise money for what they are doing, but there is also a place for giving directly to childhood cancer research.

Okay, back to the most significant issue at hand – what reality will enable Allistaire to move forward with transplant?  What must be true from the results of the bone marrow aspirate and PET/CT?  Dr. Gardner said the most important piece is that the disease in her marrow must be quite low.  The less there is in her marrow, the more likely the transplant is to succeed.  So while the transplant allows the patient to not be in remission, it is still far better that they are.  She said that if the pathologist looks at Allistaire’s sample under the microscope and she is morphological remission which is defined as 5% or less disease (this is the lowest detectable amount with the microscope), then she will be in good shape to move forward with transplant.  Of course there is also the issue of her chloromas (locations of solid leukemia).  One would presume that if the chemo worked in her marrow, it would do the same in the chloromas but apparently tumors have their own micro environments that can allow and promote cancer cell growth that doesn’t take place outside of them.  Only the PET/CT will tell the truth about what’s going on inside, but so far she has not had any pain which is a good sign.  Neither Dr. Gardner nor Dr. Bleakley are super concerned with the chloromas simply because they can be treated with focal radiation if necessary.  Of course this is not optimal as every part of the body that is exposed to radiation is more prone to develop cancer in the future and can be damaged or deformed.  I am sure that an increase in the number or size of the chloromas would require quite a discussion, even if her marrow was in good shape.

I left my time with Dr. Gardner with the plan that she would see what she could find out from Denver, and that if her marrow looked good, we would be discharged from the hospital and if not, we would stay in.  So what’s the point of packing I thought.  I lay in a flattened, utterly still state.  The phone rang with that attention grabbing number ever emblazoned into my brain: (206) 987-2000.  My heart jumps every single time that number shows up on my phone.  Even when all has been well that number gets my heart thumping and dampness of the palm.  It was Dr. Shoeback, the attending doctor at Children’s.  “The pathologist can see no cancer cells in Allistaire’s sample.”  WHAT?  Utter ELATION!!!!!!!!  I could not believe my ears!  Allistaire is in morphological remission and only the possibility of a horrible PET/CT stands in her way of moving forward with transplant.  After the exhausting torture of her last relapse, I could not have imaged this being possible.  But it worked!!!!!!  On Monday we should have results back from Flow Cytometry, but that will only give us a number below 5% and while it would be awesome if it was zero, it doesn’t need to be any less than 5% to be given the open door to transplant.

On Monday at 1:15pm, Allistaire will have her PET/CT scan and by the end of the day, I should hear from Dr. Gardner with the results.  Of course a plan can’t really be formulated until all the data is in, but the AML docs and Dr. Gardner are discussing with Dr. Bleakley what would be the best plan for “bridge chemo.”  It is necessary to have some form of treatment between the end of this round of chemo and conditioning chemo because you ethically can’t get the donor moving forward with their steps until you know you really can have a transplant.  By the way, while Allistaire has no U.S. donor, Dr. Bleakley is trying her best to exhaust all possible options for Allistaire.  She is in contact with the German version of the FDA to get approval on their end to get a consent process with the overseas donor to manipulate the T-cells.  I think the idea is that this is an additional step taken with the donor’s cells and because the donor’s cells are technically part of the donor or owned by the donor, they have to give consent.  If you want a super interesting read on this topic, check out, “The Immortal Life of Henrietta Lacks.”  If approval is given through the German system, Dr. Bleakley can then seek out approval from the FDA.  Even if all this approval goes through, there is still the issue of the timing and age of the cells given the additional time that would be required to process the cells in Seattle.  If the donor is from a “major center,” in the German system, this increases the likelihood that the quality and timing of the cells could work.  Dr. Bleakley says that ultimately it will be up for Sten and I to decide what we want to do.  It’s a gamble really.  The conditioning chemo for the trial transplant and the standard transplant are different.  The donor cells could arrive from overseas and it be determined that they are not in good enough condition to be processed and take out the naive T-cells.  In this case only the minimal processing that always occurs with donor cells would take place and Allistaire would get the transfusion of donor cells as is.  There is a lot to consider, if even we end up having that choice to make.  In the mean time, Allistaire will need some chemo to keep the bad guys down.  This could either be another round of the DMEC (Decitabine, Mitoxantrone, Etoposide, Cytarabine) which she just had – in the clinical trial it has been given in one to three courses.  Because her heart remains in good shape, this would be an option.  Additionally, Decitabine can become even more effective over multiple courses in the same way that Azacitadine does, which she had post-transplant last time.  Another option would be Decitabine alone.  Lots of brainstorming amongst the docs is necessary.

I can hardly believe it.  I can hardly take it in.  I cannot stop smiling!!!!!  My girl has been given one more open door.  Every day of this journey feels like walking around a blind corner.  There is absolutely no way to predict what the next day will bring.  Often the entire trajectory of your world can shift from morning to night.  The wind blows, the seas rage and toss and yet the north star is unmoving.  I keep my eyes fixed on Christ, my one sure hold.  Tomorrow morning we rise to a new day.  I have no idea what will be known when I lay down to sleep Monday night.  What if this whole thing, this crazy journey is just so that I would meet Debbie today in the rug aisle in Target?  What if all these years of highs and dark lows are so that I could tell her, Debbie, my hope is in God!  My hope is in God!  Not that He will save Allistaire, though I have joyous confidence that He can overcome the most hideous of cancer cells, but that this whole crazy life and world are His and He will accomplish the beauty of His will which is more magnificent and glorious than we could ever, ever imagine.  His promises are sure footings.  Debbie, your hope can be in God, in Christ the Savior who was born to bring peace and goodwill to all men!  Oh let the whole earth, the whole wondrous earth sing His praises, may every cell of my flesh rise up and strain to declare His love, His beauty, His overcoming power to redeem and raise the dead, the dead heart, the dead flesh.  He is coming, He is coming and I am on the lookout!

(The top picture is of the vial of her bone marrow aspirate and the the tiny bit of bone is the biopsy.  I’ve included at the end a number of pics from three years ago – always wild to see some perspective on our journey)IMG_2149 IMG_2154 IMG_2155 IMG_2159 IMG_2160 IMG_2161 IMG_2164 IMG_2173 IMG_2181Allistaire with Papa sisters and cousins 1 Christmas Family Cancer Fears Me DSCN4804 DSCN4805 DSCN4806

Pounding Anticipation


IMG_2134 IMG_2139Growing up, as the days grew near to Christmas, my brother, Patrick, and I would be wild with excitement.  In the last few days preceding Christmas, I would abandon my room and take up post on his top bunk bed, going to sleep at night dreamily gazing at fuzzy orbs of red, green, yellow and blue reflecting against the ceiling from the Christmas lights lining the roof outside.  On Christmas Eve we were so giddy we could hardly fall asleep and seemed to wake up repeatedly only to slump back to bed once we realized it was still the middle of the night.  In the final hours, before the time we had negotiated with our parents, we would lay on the floor, chins in hand, staring at the clock with the red digital numbers and faux wood grain siding.  Our joy and anticipation of what lay under the Christmas tree downstairs was uncontainable.  We took great care to contemplate all the joyous possibilities.

The last several mornings I wake with a shocking pounding of my heart.  I check my phone, it’s 4:36am, it’s 3:56am.  I lay there with eyes wide and the disturbing sensation of a thump in my chest that seems too palpable.  I tell myself to go back to sleep, it’s a long time before 6am when I will rise and that will be the time to get her labs.  Even as I lay down at night, I know the morning is coming.  There is some clicking sound that keeps waking me.  I am convinced the nurse is in the room with the familiar click followed by the sound of the blood pressure cuff expanding telling me 6am vitals are underway.  It’s the time of reckoning.  I lay utterly still, ears alert, straining but hear no more sounds.  It’s just the refrigerator.  It’s not even close to 6am.  I force myself to go back to sleep.  My bladder demands I wake and as I round the corner into the bathroom I scan for a white sheet of paper – maybe the nurse printed labs early and it’s lying there waiting for me.

Allistaire’s room is decked out in Christmas joy – tinsel, ornaments, pink tree and battery operated Christmas lights – some cheerily blinking their bright colors, others transforming slowly from one array of colors to another.  But just underneath that holiday cheer, underneath the sparkle of snowman tummies and reindeer hanging from the IV pole, the anticipation courses in an altogether different direction.  While it seems all the world around us scurries about in final preparations for the biggest holiday of the year, our life ebbs one single day at a time, one lab draw to another.  One 6am to the next 6am.  Christmas is a blank day on the calendar.  It lies in an altogether different realm.  Christmas feels more significantly like next Thursday and Thursday dwells on the other side of Monday.

Every day in rounds the resident doctor repeats the same line, “awaiting count recovery.”  That is our plan of action.  We wait.  Here we are on the 30th day of this round and Allistaire’s ANC (Absolute Neutrophil Count) has been on the rise.  Her marrow is recovering.  Yesterday it was 157 and today it was 171.  It needs to be 200 in order to have a bone marrow test and in anticipation of this, she is scheduled for her bone marrow tomorrow morning at 11:15.  This time they will take samples from both hips in order to ensure a sufficient sample.  In the past her marrow has been so fibrotic, it has been difficult to even get enough aspirate to test.  They will also be giving her intrathecal chemo which is chemo placed directly into the spinal fluid.

There are essentially four tests by which her cancer could reveal itself – in her peripheral blood in the form of blasts which would be seen in her labs, in her bone marrow as seen under the microscope by a pathologist and/or through Flow Cytometry, and/or in the PET/CT scan which is scheduled for 8am on Monday.  Each day presents another opportunity for the unseen to become seen.  Each day I scan down the long list of items quantified, hastily pursuing the one number that matters above all else – Absolute Blast Count.  Our whole life feels balanced on these tiny pinpricks of numbers, these infinitesimal objects that determine the course of her life.

It’s finally 5:45 am and I reach over to turn off my alarm.  I do not spring from bed.  I do not slowly rise.  I lay there, still, looking for the face of Christ, calling out to Him.  I survey what I know to be true about Him.  I consider His Word.  I reflect on how He has cared for me before.  I fix my heart on His promises.  It is becoming less hard to yield.  But the thought of losing Allistaire has lost none of its sting, its slice, its atom crushing force.  My heart pounds and I gather on my armor, knowing I may be run through with the blade, but miraculously, I am incapable of utter defeat.  I carry the quiet power within me, conscious of the ripping pain that can still penetrate.  My feet hit the cold linoleum floor and the day has begun, but the battle started while I lay still.

So much bounty.  “You’re on the VIP mailing list Jai,” Marie, the Unit Coordinator, tells me.  “What does that mean?”  “Oh, you get so much mail, more than anyone else.”  The packages pile up on the floor.  The envelopes keep coming filled with words of compassion, love, delight, faithful prayers and tangible helps.  Every need we’ve had has been met, not just sufficiently, but abundantly.

Allistaire herself, is also doing remarkably well!  As of today, she has finished her 14 day course of the antibiotic, Cefepime and ethanol locks on her lines have been discontinued.  This alone means a far quieter night that now only requires vitals and labs.  Because she is such a rock star at taking all her meds by mouth and drinking her required 44 ounces a day, she has also been taken off IV fluids and is completely detached from her IV pole.  What glorious freedom this is!  Allistaire’s appetite continues to improve and she gained .3kg over her intake weight.  Perhaps most phenomenal are the results of her Echocardiogram and EKG.  All her cardiac function is doing excellent, which is especially amazing in light of the chemo she had, mitoxantrone/blue thunder, which is well-known to be hard on the heart.  Her ejection fraction prior to this round of chemo was 65, now it is 63.  Her shortening fraction started at 33 and is now 32.  I am in awe of how well her heart has held up thus far!  God has not stopped pouring, and I mean literally, pouring out His blessings on us!  Allistaire goes throughout her day with silliness and joy, ever in hopes of playing tricks on the staff.  She rides her bike around the Unit unfettered, pink, yellow and blue butterfly wings aloft behind her, vampire teeth firmly clamped in her mouth and my constant exhortations, “Slow down Allistaire!”

I think it is this radical contrast of such a thriving, vibrant being and the real possibility of the life being drained from her by cancer that causes such dissonance in my heart.  How can the two possibly coexist?  But this is what I face each morning with labs, as I wait for each test result – the beauty of her bright smiling eyes with the knowledge that Beth has gone home without her son after just shy of a year in the hospital and three bone marrow transplants.  The living can die.  We are not exempt.  God does not promise to open the doors before us.

Allistaire and I watched a Disney movie about a grizzly bear and her two cubs today.  We just decided we liked it so much, we might watch it together again tomorrow and this time it won’t be so scary because we know the outcome of the story, the big mean male grizzly does not find the sweet little cub and tear him to pieces.  The story has a happy ending.  I dwell within my story and I don’t know all the twists and turns of the plot, but my Father in Heaven has told me the ultimate outcome.  It has a happy ending, at least, in the very end it does.  Sometimes the anticipation caused by ever balancing on a nimble edge over a cliff is exhausting and all-consuming.  I may fall, I may not.  It is time to get to bed and face another set of labs in a few short hours.  I may fall, but I won’t be dashed to pieces.  My anchor is in the Lord.IMG_2050 IMG_2052 IMG_2057 IMG_2059 IMG_2068 IMG_2072 IMG_2075 IMG_2079 IMG_2088 IMG_2090 IMG_2095 IMG_2106 IMG_2115 IMG_2116 IMG_2120 IMG_2123 IMG_2133 IMG_2143


WHAT?!!!!!! NO WAY!!!!!!!!!!


IMG_2036 IMG_2038What a morning.  I rushed out of Ron Don to make it back to the hospital in time for rounds.  The door to the parking garage opened and revealed a bright sunny day with blue sky.  “How dare you,” escaped my lips as I told the sky it was inappropriately joyous on this most woeful of days.

I got to Allistaire’s room just minutes before rounds. I opened the blinds and light flooded in.  The doctors donned their ugly pale yellow gowns and blue gloves.  I knew what was coming, “Allistaire is our four-year old with relapsed, refractory AML,” the resident would surely say.  I had bucked at the word “refractory,” in past rounds.  Dr. Leary affirmed they would stop using that word.  It means unresponsive, it means a disease that won’t back down in the face of treatment and I was not ready to submit to that word until there was evidence to affirm such a wretched label.

“I guess you can say refractory now,” I mumbled sadly.  “There were blasts today,” I say and Dr. Learly responds she hadn’t seen that.  The resident goes on with the ordinary daily schpeeel and I just couldn’t take it – whether or not she had a stool, what her hematocrit was, etc.  What’s the point of all that stuff, I felt.  All I could see were the presence of blasts that spell death!  I began to crumple on the bed next to Allistaire and I could not stop crying.

I don’t know exactly what happened next but basically, the staff were looking feverishly at the computer and in baffled shakes of their heads, declaring, “There are no blasts.”

WHAT?  I could not believe my ears?  But there were blasts this morning.  I saw it with my own eyes.  Absolute Blasts: 10.  But, no, they were nowhere to be found, only a few little basophils and granulocytes.  Did I see it all wrong?  I had kept stammering to the nurse about blasts this morning and she did not correct me.  I cannot say what actually happened.  The doctor called the lab and confirmed, there are no blasts.  The simple reality is probably I read the line on the computer wrong.  It is the most wonderful mistake I have ever made.

So friends, yah, I feel pretty bad and really, pretty dumb for putting you all through this.  The sun is shining brightly and never has the day more well matched my joy.  Today is another day with no blasts.  Tomorrow they may come and I’ll just have to refer back to that most woeful post from earlier this morning, but for the moment, hope has risen up once again.  I imagine some, if not many, will say I am far too emotional about this all, far too ready to see the worst.  I understand that but you see, I see the worst every day.  The worst HAS happened.  Time after time after time the news has been heart breaking.  My friend came up to visit me on the Unit the other day.  While her child does not have cancer, she has had another life threatening illness that is in a good spot for the time being, but it wasn’t always so.  She told me she had to fight not to throw up coming here.  I know that terror that strikes your whole body.  We are too linked to sorrow and shriveling hope that it is hard not to be pulled down in an instant by the next wave of bad news.  And this morning, when my eyes read that blast count, I was shoved under again.  And might I add, in all the mornings I have read Allistaires labs, which occur every single day, I have never had the joy of reading bad results incorrectly or having a lab error, though I have yearned for such!

But I have been given pardon this morning and I will take it with extravagant joy!

Black Waves


IMG_2005“To swim in the ocean, you dive through the waves as they come at you,” my friend Matt tells me as he points to the horizon and the relentless pounding of ancient force.

I do my best to dive through the first wave, but I don’t quite make it and the curling power forces me down.  My body is tumbling in the cold water.  I try to get my footing on the sand that gives way.  Breath.  Breath.  I see the next one coming and before I can recover, it slams me down again.  The waves kept coming, utterly oblivious to my plight.  This must be what it feels like to be drowning, but that won’t happen.  It can’t happen, right?  After three or four waves I finally scrambled out of the pull of the waves, tired and shaken on the sand.

Matt is dead.  The incomprehensible happened.  And it’s happened so many times since.

My friend and her daughter are back on the Unit.  She tells me how little there is left to try, how she must hang on for a clinical trial she hopes to get on, but it may not be until January.  She walks slow in the hall, bearing up under the pain that seems to be everywhere.  It has not mattered that her disease gave her an over 80% chance at survival.  Her she is.

I saw a dad I know the other day.  He and his daughter had driven hours to come visit one of her friends whose cancer keeps returning in the lungs, a bone cancer.  This is how it goes and when it does, it almost always spells the end, eventually.  He tells me of some of her other friends, this one at home on hospice to the north and the other to the south.

Hospice.  “They went home on hospice.”  Has a word ever cut so brutally.  It is like a dirty, ragged knife, cutting slow but deep.  It is tearing through your gut and it is so horridly slow but you can do nothing to stop its course.

I look at my friend and her daughter and think, here we are, we have at last become, “those people.”  Those, that even within this small harsh world, have become “other.”  We are the lepers.  We are the stories to steer clear of.  We are the living, breathing, shuffling statistics we have all sought to disregard.

I debated when my alarm went off this morning whether or not to give into the desire for sleep, but rather determined to get up and climb up and down the overly warm stairwell as some attempt at excercise.  The nurse came in as expected for 6 am vitals and I asked her to see Allistaire’s labs.

“They’re all normal,” she said, “but the ANC isn’t back yet.”

The sickle came swift and sliced through my legs and left me collapsed.

“That means there are blasts,” I stammer and my eyes scan as she gets to the right page on her computer and there it is, everything is back now.

Absolute Blast Count: 10; Absolute Neutrophil Count: 0

Her ANC had been at zero for sixteen days and then on Friday it peeked up at 8.  I was so relieved to see no blasts.  Yesterday it was 20 with no blasts.  Every day in rounds the resident repeats the same refrain, “awaiting count recovery.”  That is what we’re here for.  Get the chemo and then wait and wait and wait to see if it worked.

It hasn’t worked.  The chemo has failed to control her disease, much less to suppress it to get into a position for transplant.  It only takes the sighting of those few horrific blasts to know there will be no transplant next and what’s next requires a move to Denver.  I imagine we will still have to wait until her ANC gets up to 200 to do the bone marrow test.  You have to have enough recovery of the marrow to get a clearer idea of the amount of disease.  What is clear is that her cancer is recovering along with some healthy cells.

I should also update the news that there is no match for a donor in the United States.  Not one.  She needed a U.S. donor to be able to get the Naive T-Cell depleted transplant that Dr. Bleakley is overseeing.  It is just baffling and hard to imagine that in the whole of the United States there is not one person who can offer Allistaire the cells she would need for another chance at life.  Please, if you are not on the registry, ask yourself why not?  How often are you given a chance to save someone’s life?  This is not abstract.  This is as tangible as it gets!  You haven’t had the time yet to go online to check it out?  You’re afraid of the pain?  Please, are these reasons to deprive someone the chance at life?  So many have said they love Allistaire, they are praying for Allistaire.  Is any child less worthy of life?  I asked Dr. Bleakley if they could do another search for a U.S. donor if we ended up having more time before transplant and she said it was a matter of very diminishing returns.  But you know what?  It only takes one person to be a match, ONE.  You could be that one person.  Click HERE to sign up to be on the bone marrow registry.  And please pass on this appeal to as many as you can.

The last two days have been pretty wonderful with Allistaire.  I wish you could see her bright face and mischievous twinkle in her eyes.  “You distract him,” she hoarsely whispers.  “Connor, I think there may be dragons outside Allistaire’s room.  Can you go keep a look out?”  Connor, the CNA, joyfully plays along, and Allistaire speeds with IV pole in hand from bathroom to bed and throws the pale blue covers over her head.  I cry out, “Oh Connor, where is Allistaire?  I fear she has been eaten by the dragons.”  The blankets wiggle and giggle with her uncontrolled delight.  She wants to play this game over and over.  Her appetite has been better and eating has become much less of a struggle.  It still takes about two hours per meal but at least now she is getting in a reasonable amount at most meals.  Her weight only dropped point two kilograms over the week that she didn’t eat much.  She has loved having Betsy, the music therapist come by and sing songs together and play instruments.  Two sweet young ladies from the ministry of University Presbyterian Church, Side-By-Side, came and played with her Friday afternoon.  She absolutely loved having them and was desperate to have them stay longer.  They promised to be back in seven days.

We’ve gotten into a little routine she loves.  When I leave either in the morning or at her nap time, she whispers with glee, “you go over there by the curtain and I will tell you things.”  So I obey and go stand at attention by the curtain.  “I love you and I hope you have a good time exercising (insert whatever activity I’m off to do), and I’ll see you after my nap.”  Then she blows me kisses and I respond in turn, “Allistaire, I love you, I hope you sleep well, and I’ll see you when you wake up.”  I obnoxiously blow millions of kisses.  Her eyes, so bright with happiness and her sweet, little voice tilting up and down with her words.

No matter how my times I have bent my knee before the Lord, submitting to whatever His will might be in her life, in my life, in our lives, I don’t know any better how to let her go.  I have made no progress in my ability to know how to let her go.  My whole being soars and stretches with love for her.  This little girl becomes only more and more precious to me.  And I just can’t comprehend someone so wondrously alive being dead.  She is no different from millions of other children who have been lost.  She is no more valuable than any other human, any other mom, sister, dad, grandparent that has died.  But these millions upon millions of deaths do nothing to diminish the loss of her.  If she dies, it will take all of her.  She will be gone from this life.  I see all that we’ve been given, these years with her, even these three whole years since she first became sick.  I see how fortunate we’ve been to live in this time and in this place, we have been given so, so much.  I see the overwhelming kindness of so many people, both that I know and those we’ve never met.  I look at the Lord and I know I will see her again.  I believe in the good that will come.  But here and now, her loss would be loss. Her gone would leave a gaping hole.  This life will no longer contain that voice, those bright eyes, that laugh.

I know I must go on, putting one foot in front of the other, going through each step that must be taken.  I am asking God to hold me up.  I am asking God to give me moments of joy in this midst of these crashing black waves.  I will keep my face to Him, but it is a face streaming with tears, agony of heart, gasping of breath.  Lead me by your hand down this road Oh Lord.  I cling to you.  I may even need you to carry me, I don’t know that I can will my feet to move forward into that darkness.

I cling to your promise.  “I am in that dark place, Jai.  You will be found my me.  I am the God that turns darkness into light.  I am the redeemer God.”IMG_1992

A Thousand Barricades


IMG_1926Written yesterday:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Thanks and thanks and thanks, giving thanks


Little three-year old Howie died Friday morning of neuroblastoma.  I stood in line at Anthropologie, trying to score a deal on Black Friday and get out of the hospital for a few hours.  Out of habit, I pulled out my phone as I waited.  There was Pam’s text, “Howie died.”  I gasped out loud.  The phone went black and I fumbled to see if it said what I thought I just read.  Suspended in the swirl of shopping mania, the world seemed silent as I saw arms loaded with clothes and faces considering Christmas gifts.  There on the hill, the world went black, went silent.  Forever the cheer and celebrations of this season will be punctured through with ripping grief for that family.  The fight is done.  There is nothing more left to do.  He is gone, gone.  His eyes will never again light up.  His sweet voice will never again utter, Mommy.  His father will never again gather him up in his arms.  The warmth of his neck is lost.

My mind apprehends the fact of his death, but my whole self struggles to take it in.  His death declares the possibility of Allistaire’s death.  They are no different from me.  They are ordinary people who were suddenly thrust upon this path, just as we have been.  I sit here in the same spot in Starbucks that I have countless times before.  I recall that conversation a year and a half ago when Dr. Pollard said we could be done.  We didn’t have to try more chemo.  We could bring her home.  Bring her home to die?!  I could hardly breathe.  I could not stop gasping, trying to get up to the surface for air.  I felt myself going down into the dark waters.

Yesterday was Thanksgiving.  It really was a lovely day.  In our small room we enjoyed such pleasures as one another’s company, bright afternoon light, a football game and the incredible provision of an amazing Thanksgiving dinner.  Julie and Jeff, whose son Zach died last January of AML after his third transplant, cooked us and two other families a feast complete with homemade ham, turkey, gravy, yams, mashed potatoes, green beans, pinto beans, spinach with bacon, cranberry sauce, butter, rolls, pumpkin pie and whip cream, pecan pie, cherry pie, apple pie and cupcakes.  Out of their sorrow, on their first Thanksgiving without Zach, they cared for three families trapped inside the hospital as our three children fight against AML.

Allistaire was also blessed on Thanksgiving day with the gift of her 40th transfusion of red blood cells.  On Sunday, she had her 27th transfusion of platelets.  On the evening of her very first transfusion of red blood, on December 1, 2011, her hematocrit was 9.  The doctor later said she would have lived 2-3 more days with a red blood level that low.  That transfusion saved her life, just as each one since has given her the chance to persevere and fight against her swallowing cancer.  So thank you to each of you who have given of your time and endured a wee bit of pain, to sustain Allistaire’s life, and those in grave need like her.

Thanksgiving marked her third day of her ANC (Absolute Neutrophil Count) hitting zero.  It was also the second day of zero blasts.  The blasts returned last week in low numbers (18, 10, 6, 18).  We were so thankful on Wednesday when they finally hit zero.   When that first day of 18 blasts showed up, I again felt that shaking terror, that suffocating clamp on my throat.  Why God, why?  Why do you have to do this?  Why do you have to let terror strike again and again?  Can’t you just give me a break?  I barely felt settled in the hospital and back in this life when I was ruthlessly slammed up against the wall, with tip of knife pressed up against my throat.  Will I believe God?  Will I trust Him?  Will I rest in Him?  I’m up against the wall and my heart is pounding, my breath is strangled and the world tilts hard.  Will I believe?  Is God really good?  Because man this doesn’t look good.  There is nothing good about this.  My whole view is flooded with brokenness.

Every time I wait for test results, every time bad news is delivered once again, I am given opportunity.  The Word of God calls me to give thanks, regardless of the circumstances.  How?  What is there here in this mess to possibly give thanks for?  The Lord offends by His command to give thanks when the whole world turns black, turns silent and death swallows.  How do I possibly give thanks?  Resisting thanks drives further still the question out of the corner of my eye, is He good?  Am I actually some crazy lady brain washed to believe a whole load of crazy?

The waves pressing cold against my face and breath sputtered with swamping water.  Down, cold, dark, arms flailing, chest straining, burning.  Fighting for surface.  Whole body fighting.  The tipping point is near, the temptation to yield and slip silent into that cold deep dark where all thrash is done.  Sometimes I don’t want to have to fight to see the Lord.  Sometimes I weary and just wish for some way to walk away and never turn around.  But what is there out there for me?  The desolation of life outside of God is a complete aloneness.  Sometimes the dullness of a simple life where eyes stay put on earthly plane appeals.  Eat. Drink. Sleep. Work. Repeat.  Fancy collection of elements that eventually gave rise to consciousness, but really it’s all just biology – love, hope, religion – just biology.  That’s what I’m told.  Every inclination of my heart is simply tied back to survival of the fittest.  This love, this hope, this searching for God is merely impressive operations of a brain that innately yearns for the species to survive.

But I would have to will myself to blindness.  Because when I look up and look out and look in, when I scan all that I perceive with finite eyes and mind, I see that there is so much more.  There is SO much that defies my comprehension.  I went and saw The Theory of Everything last week.  It’s the true story of Stephen Hawking and his pursuit to understand time and it’s place in physics, in the universe.  Sten and I saw Interstellar yesterday.  It’s a wild movie about traveling through a worm whole, passing from our galaxy into another and the mysteries of black holes, mysteries that ignited the imagination and brilliance of Stephen Hawking.  In talking with a fellow mom the other day, she mentioned the Higgs Boson Particle.  Look it up.  You will begin a journey that unveils a world where time bends and there are realms upon realms of reality that completely boggle the mind.  We are SO small in the universe!  Our minds so finite.

So when I feel the tip of that knife pressing up against my pale neck, threatening to burst through and rip out my life force, snarling to tear me apart, I look up.  I look out.  I fix my eyes on the Lord, my lifeline in these ragged waters.  I place my hope in an infinite being who is beyond and outside of time – a being who makes audacious claims about what He has done and what He will do.  I look at finite flesh and flower and sky and I see we humans who are absolutely discontent to live as though this is all there is and I am convinced that in as much as I can know anything, I know the Lord is there, orchestrating my days, ordaining the life and death of cells in Allistaire’s flesh.  The Higgs Boson Particle is not mystery to God.  It is His delight.

In Ann Voskamp’s book, 1000 Gifts, she gives a compelling case for us to give thanks.  She challenges herself, and thus the reader, to be on the hunt for all of God’s gifts – all of them, and to name them and in so doing, to stake claim to them, to possess them more fully.  She strives to not let life pass her by but to dwell fully in the present and soak up all the bounty that exists.  But she dares to go further, she dares to take God at His word when He tells us to give thanks in all circumstances.  Get down low, eyes wide, scanning, scanning – where is the gift?  Where is the bounty in the sorrow, in the ripping times, in the dark, in the silence, when death swallows?  I can never do her work justice in this short space, but if I might summarize her work by saying that in practicing the habit of giving thanks daily, hourly, moment by movement, we gain eyes able to see the bounty in the times that at first appear as only ravishings, as only loss and desolation.  She refers to these brutal times, when we can still be on the look out for God’s good, as “seeing through to God places.”  That is the point of giving thanks – giving thanks enables us to see God.  And to see God is to have fullest of life, fullest of joy, fullest hope for fullest redemption.  To strive to give thanks stops my view from being swamped by sorrow and gives me eyes of hope – hope that this right here, right now, this is not all there is.  There is SO much more!  The SO much more enables me to dwell fully in the present – I am more able to take in the whole view – not just a view saturated by death and disease and threat of loss and present loss – there are all these AND there is more.  The loss is wrapped up within the fuller view of life in God.

I wish to leave you a few quotes from Ann’s book to give you a taste of her dare to give thanks at all times.  God has used His work in her life and her words to spur me on, to give further evidence, to offer support to what I have seen Him do in my own life.  She is my sister in Christ and I am humbled to have been so blessed by her yearning for Him and His faithfulness in her life.

“You murmur the question soundlessly. No one hears. Can there be a good God? A God who graces with good gifts when a crib lies empty through long nights, and bugs burrow through coffins? Where is God, really? How can He be good when babies die, and marriages implode, and dreams blow away, dust in the wind? Where is grace bestowed when cancer gnaws and loneliness aches and nameless places in us soundlessly die, break off without reason, erode away. Where hides this joy of the Lord, this God who fills the earth with good things, and how do I fully live when life is full of hurt? How do I wake up to joy and grace and beauty and all that is the fullest life when I must stay numb to losses and crushed dreams and all that empties me out?”

“Is this the toxic air of the world, this atmosphere we inhale, burning into our lungs, this No, God? No, God, we won’t take what You give. No, God, Your plans are a gutted, bleeding mess and I didn’t sign up for this and You really thought I’d go for this? No, God, this is ugly and this is a mess and can’t You get anything right and just haul all this pain out of here and I’ll take it from here, thanks. And God? Thanks for nothing.”

“And I moan that God has ripped away what I wanted. No, what I needed. Though I can hardly whisper it, I live as though He stole what I consider rightly mine; happiest children, marriage of unending bliss, long, content, death-defying days. I look in the mirror and am fearlessly blunt – what I have, who I am, where I am, how I am, what I’ve got – this simply isn’t enough. That forked tongue darts and daily I live the doubt, look at my reflection, and ask: Does God really love me? If He truly, deeply loves me, why does He withhold that which I believe will fully nourish me? Why do I live in this sense of rejection, of less than, of pain? Does He not want me to be happy?”

“I wonder if the rent in the canvas of our life backdrop, the losses that puncture our world, our own emptiness, might actually become the places to see. To see through to God. That that which tears open our souls, those holes that splatter our sight, may actually become the thin, open places to see through the mess of this place to the heart-aching beauty beyond. To Him. To the God whom we endlessly crave. But how? How do we choose to allow the holes to become seeing-through-to-God places? To more-God places? How do I give up resentment for gratitude, gnawing anger for spilling joy? Self-focus for God communion. To fully live – to live full of grace and joy and all that is beauty eternal. It is possible, wildly. I now see and testify. So this story – my story. A dare to live an emptier, fuller life.”

As for sweet Allistaire, she is doing relatively well.  Our life circles around meals and sleep.  Each meal seems to take about 2 hours of relentless effort to coach in bite after bite.  She has to drink 44 oz of fluid a day to remain unhooked from her IV pole, which she has managed to do every day since coming off of chemo and IV Zofran (for nausea).  Our goals are simple – protect against infection with baths, chlorhexidine wipes, ceaseless hand washing and Purell, keep her hydrated to help her kidneys and keep her weight up.  Her ANC remains zero and she continues to get transfusions as needed in this time of decimated marrow.  Today she will get another transfusion of platelets.

The saddest development has been that due to her being in contact isolation for VRE, she is not allowed to have any visitors under 10 years old, which has meant that now even her cousins are barred from visiting.  I was so, so sad when the Infectious Disease doc came by to enforce the rule.  The upside is that Solveig was here for five days and the two wild cat girlies had a great time together.  It was hard to see Solveig leave this morning.  It’s also been great having Sten here for the past week.  He has stayed at the hospital each night and taken on the bulk of meal-time duties.  It has been a great break for me.  Sten’s folks watched Allistaire and Solveig stayed with my parents so Sten and I could have some time together. We are truly indebted to our parents for their faithful, generous love.  Both sets of our parents have been unflagging in their support through this now three-year journey.

It is surreal to realize that it was three years ago, on December 1, 2011, that it first became clear that something was drastically wrong with Allistaire.  I remember when she was diagnosed just a week later with AML, being told that she would have five hard rounds of chemo with most of that time spent in the hospital.  We were utterly overwhelmed at the thought of going through that.  Little did we know how much more would come.  The Lord said to be expectant.  I could not have guessed how He would move in my heart and be at work in our lives.  I could never have chosen these three years and yet, given the chance, I don’t think I would ask to undo them.  The good has been other-worldly, it counts for little in earthly currency, and yet it is an enduring good and an exponential bounty that is not yet done unfurling.  Thank you Father.  Thank you for these past three years, for all your abundant provision, tangible and intangible.  I look ahead down the road and it is easy to fear what lies down that path.  Some times I want to turn away.  Rather, I dare to fix my eyes on you and give thanks, even as the knife threatens.

Here are a few videos of the little miss Allistaire. I needed Sten, my techy fellow, to help me remember how to put videos on the blog.  The first is from last week, the second is from March 2012, the only round of Allistaire’s first treatment that she was able to come home for a few weeks. The next two are post transplant (summer 2013) when she was a huge chubster on steroids.  The last one is from last night.

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