Tag Archives: Blue Thunder

All together different


IMG_1427Today we walked down that long white corridor, light reflecting up from glossy floors, that tunnel to the Unit, but without trepidation, without terror, without the clamp around the throat threatening to cut of your breath.  Today we delighted in the amusing sight we gave the world around us – a little bright flower, a bald girl giggling with the effort necessary to tow the absurdly overloaded wagon and I pushing the equally loaded wheelchair, coffee in hand.  The tower of the hospital surrounded in a white swirl of fog made it appear we were entering another world, a secret passage to some Narnian existence.  And so it is, we reenter the world so strange, yet so familiar it has become beloved.  There a whole cast of friends surround us and an altogether different language is spoken.  Creatures of unexpected features are common here – the gorgeous unfettered curves of craniums, luscious curve of cheeks round as grapefruits, hair flourishing in disregards to the confines of foreheads, upper lips, backs or silly breaks between brows, lines swing from chests and poles accompany these little ones, simply one more appendage.

We all know what we’re doing here.  We’ve come to slay, to annihilate, to wield weapons of mass destruction.  We have come to destroy a destroyer.  Ushered down the hall to the very end, we enter our new room, Forrest 7A:308.  This is the MIBG radiation room.  The room is lined with lead.  Two doors, one lead, protect those on the outside from what typically takes place in these few square feet.  It is no matter that cancer is merely a wee little cell, it is within its confines that disaster has taken hold and must, must be stopped or its insatiable fury to divide and conquer will force its own suicide.  So the poisoning began promptly at 10 am, with joy, with chatting, with laughter, with ease.  First the Cytarabine, then the Etoposide and finally the magical potion – blue thunder – which later turns Allistaire’s pee a fantastic happy green.

I slept well last night and was simply ready to get this show on the road.  This round, this entrance into the constraints of the hospital this time feels all together different.  I walked through that door with hope.  There was none of the dread of the last round of chemo.  It worked and there is the hope and expectation that this combination of chemo will continue to do the same.  Allistaire is full of life and glee and a fair amount of weight packed on to get her through the dip in appetite that will invariably come.  Our great volunteers from Side-By-Side (a ministry of University Presbyterian Church) came again today, just as on previous Friday’s.  Allistaire cannot get enough of them. When they arrive she is beside herself with silliness and when it is time for them to leave, with her most forlorn face possible, she asks if they cannot play longer.

So we look out into the days ahead, at least 28 of them, looking for what the Lord will lay before us.  Let us make the most of these days!  Let them fill and swell with all the Lord sees fit.  Let us seek diligently to love each face that enters this room.  Let compassion and love fill my heart for each nurse, doctor, fellow parent, sweet patient and staff person that gives so tirelessly to care for us.  God help me to make the most of the opportunities you give, not disregarding them because of laziness or intimidation or selfishness.  We have been placed by the living God into these hallways and rooms for this specific window of time because of His great and beautiful purpose.  Yes, we are here to walk through each step to fight for Allistaire’s life and we will, I will!  But Lord, help me to keep my eyes open and my heart willing to every open door you given and fill me with your Spirit that Your love, Your light, Your hope can overflow!  That is my joyous hope.  This is what invigorates my spirit.  Let me not deprive myself and others of the bounty that He intends!

For those of you who pray for our days, pray for these things as eagerly as you call out to God to heal Allistaire!  You know what I want to see God?  I want to see you raise the dead!  I want to see you raise the dead cold heart of stone and breathe life into dry bones in the wilderness.  That is the miracle I’m asking for!  Do you hear me God?!  I am calling out to YOU the Ancient of Days, you who tarry only because you want that all should know the eternal, abundant life you are holding out to each of us through the sacrifice of Christ.  Father, who am I that I should lay down my life, what is my life, but Lord I do, I do!  I say yes to whatever you have for me because I know my suffering is temporary, it is short, it is light and I am asking for the ultimate pay-off: that other’s should have eyes to see you, that people would be drawn to your irresistible beauty and magnificence.  Oh Lord, you know how I love, love your otherness, your ways that are not our ways, your good that surpasses our comprehension, the paradoxes that so enamor – oh that others could see you for who you are.  And Father, show me more of yourself, more, more!  I want to see new facets of your face, new angles of light, even shadow.  Lord, you are all together beautiful.  May I greet each day with this deep, swelling joy.

It has been nearly three weeks since Allistaire and I left the hospital.  I didn’t want to leave for fear of all the inevitable exposure Allistaire would have, but it has been a wonderful break.  It is SO great to have not one person walk into your room at night, to stagger to the bathroom in disarray with no regard to modesty.  Sten and Solveig came out for a week over Christmas and we had such a great visit.  The girls played  and played and played and giggled ceaselessly.  They have such a better time interacting outside of the hospital, without all the constraints.  Uncle Jens and Aunt Jo also came out for a visit from Bozeman.  We made the most of good weather and went to various play grounds as often as possible.  Friends of a friend were out-of-town for Christmas and allowed us to use their home which made it possible to cook Christmas dinner and be together with my parents.  All in all it was all we could possibly ask for with our time out of the hospital.  It wasn’t home and that’s a bummer, but boy did we love the freedom.

This is our second 39 day round of chemo, identical to the last one.  She will have three different chemos each day for five days and then it is simply a matter of her blood counts dropping and eventually recovering.  Twenty-eight days is the standard estimate of how long this drop and rise process takes.  Day 28 will be February 5th.  There’s nothing magical about February 5th, it’s just an estimate.  Once her ANC gets back up to 200, she will have a bone marrow biopsy and aspirate, another PET/CT, echocardiogram and an EKG.  I will include below some pictures of her last PET/CT.  I believe the one that is just a white image is from the CT and the one with reds, yellows and oranges is the PET scan.  The computer overlays/combines the CT and the PET scan giving more complete info.  And in reality, there are many, many different images because they are like horizontal slices of her body, not simply one top-down view.  The brighter the image on the PET scan, the more metabolically active is that location.  There are many bright spots but that is because there are numerous places in the body that are metabolically active when given the infusion of glucose, but the cancer cells show up differently and in locations that would not be expected.  They use this scan in combination with the CT which shows physical masses to get a clearer, more detailed idea of what is going on with her chloromas.  I mentioned before that they are not sure that the spot on her left hand is actually leukemia because it has remained the exact same as the base line scan.  I just learned in our clinic appointment, that this idea is also supported by the fact that there is no corresponding lesion showing up on the CT.  They think that the area of brightness, which is in the web space between the thumb and pointer finger on her left hand, may actually be due to her thumb-sucking immediately prior to the scan.  I have asked that they do whatever necessary to really sort this out because I would really like to avoid focal radiation to her hand, which could deform the bones, if it is not clearly necessary.

Once this testing is complete, she is nearly ready to begin conditioning for transplant which includes radiation and chemotherapy.  I am not sure if there is additional testing that needs to be completed.  Were she older she would have to complete a pulmonary test to determine the health/strength of her lungs.  Of course there are various blood labs that look at organ function such as that of the liver and kidneys, but this would already be done routinely.  There may also be some period of time where they want her blood counts to recover more.  I believe her ANC would ideally need to be 750, but in reality, they would only estimate how long this could take and calculate that into her schedule.  I anticipate hearing from Dr. Gardner sometime in the coming week more details on timing.  She said she wanted to discuss with Dr. Bleakly (the transplant doc whose trial we are hoping to have Allistaire participate in) and get a schedule on the books.  It is exciting to step nearer to that mighty goal of transplant!

IMG_2349 IMG_2359 IMG_2368 IMG_2369 IMG_2372 IMG_2380 IMG_2398 IMG_2416 IMG_2440 IMG_2442 IMG_2449 IMG_2455 IMG_2458 IMG_2460 IMG_2467 IMG_2472 IMG_2478 IMG_2482 IMG_2485 IMG_2492 IMG_2495 IMG_2501 IMG_2506 IMG_2509 IMG_2515IMG_1354 IMG_1350 IMG_1349 IMG_1355 IMG_1347 IMG_1346 IMG_1433 IMG_1429 IMG_1430



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

I Choose to Worship


IMG_1677Perhaps what is the most strange is how very normal this all is.  It is like the song on the piano you have played for years – your fingers know what to do without the necessity of thought.  Your body moves in a constant sway from years of rocking babies.  Circles round and round.  Meal time has its own routines.  Take a bite.  Take a sip.  How many millilitres is this?  Take a bite.  Take a sip.  Threats to turn off the movie.  Hang the chemo wearing the blue garb.  A second nurse checks.  End of Infusion.  Flush.  End of Infusion.  Alarming pump demanding attention.  Next chemo.  Every day a bath with the protection of parafilm, press-and-seal, blue tape and finish up with the warmed Chlorhexidine wipes.  Another lap around the Unit on the bike, peering into windowed doors trying to guess at the lives within.   Blood counts fall.  Transfusions anticipated.  Round and round the circles go, small and wide.  And the faces come, one after the other, familiar, loved, with eyes slanted down in sorrow and smile on lips at the sight of a friend.  Out the window I see my old dorm from college.  The six cypress trees stand as they always have, clustered like tall girls, ever silhouetted against sunset.  Like a strange attractor in chaos theory, my life keeps circling back to this place.

We’ve settled into a most lovely room, one of the best I’m told, 218.  The view stretches wide out to the south beyond a sea of trees clinging to fall, to the lake and off in the clouds, that mysterious looming form of Mt. Rainier, cloaked behind clouds.  I already know the drawers and what fits where.  I ask for more of the barf buckets to organize socks, underwear, snacks and miscellaneous utensils, straws and cups.  The little green pot of fake orange flowers sits on the table, reminding us of a world outside that bears such dangers as fungus and bacteria and the passing beauty of plant life, ever dying and being reborn.

The hand of the Lord is evident over and over in His very sweet and tender provision.  Here, Jai, here is an activity plan for Allistaire. She may never get out of contact isolation because of VRE, but you may escort her through the halls of the Unit as you don the pale yellow gown and blue gloves.  Just don’t lick the walls.  Check.  Christy, the Unit manager, joins me on one of our walks and asks if there is anything they can do to help me in our stay.  She jots down a few notes of instructions for nurses so I don’t have to repeat the same thing every morning and nap time.  We prioritize clustering care primarily at night.  I sleep well, getting a few three plus hour spans.  At 2am, the nurse and CNA coordinate their actions in the fastest bed change the world has known.  It really was Youtube worthy.  The massive hydration that comes with chemo got the best of her.  She thinks she was just sweaty and won’t be convinced she wet the bed.  They pound out vitals, eye drops, meds, check the dressing, measure the urine and labs.

“Life doesn’t have to be perfect to be wonderful,” so says my toiletries bag.  It preaches to me every morning.

I have been cut off from the life we had, the life we tentatively, tenderly hoped would last.  I am cut off from common and desirable achievements.  I am forced into a position of need.  I must ask for my food to be heated.  I ask for milk, for cups, for wipes, for towels.  I ask for clarification on the difference between the MLL (Multi Lineage Leukemia) gene rearrangement and Mixed Lineage Leukemia.  I am ever asking, holding out my hands in need.  I can only ask for daily blood counts and watch as something outside myself fights the beast that threatens to tear away my child’s life.  I can only watch the strange dark blue of ocean drip down and flow through the tubing into her veins.

My heart is not proud, Lord,
my eyes are not haughty;

I do not concern myself with great matters
or things too wonderful for me.

But I have calmed and quieted myself,
I am like a weaned child with its mother;
like a weaned child I am content.

Israel, put your hope in the Lord
both now and forevermore.  (Psalm 131)

It is not within my grip to decide her course.  That is the Lord’s burden to carry.  As for me, I am entrusted with kisses on the forehead, light sleep that attends to small moans and cries, to encouraging another bite, the tracking of fluid intake, attending to the course of the Chlorhexidine wipe as it circles her flesh to fight invaders, holding lines as we drive the IV pole to the bathroom, making sure Doggie doesn’t fall on the floor, clean clothes, brushed hair and teeth, encouragement to submit to the nurse with the eye drops, saying no to another movie and suggesting an activity, reading books, ears attentive to her words, stories and songs, standing in the circle of doctors, being alert to all her steps forward in this tedious process of conquering this ravaging disease that is clamping out the life of little Howie down the hall.  So very little is mine, but I am determined to carry this responsibility with great care and honor that I should be asked to walk these days with her.

And above it all, on every side and saturating every act, I choose to worship.  The Lord set the Israelites free from enslavement so that they might worship Him.  That is the whole point of freedom.  That is life abundant.  To know the Lord is to worship Him, to blush and bow the head at His unspeakable beauty, to stretch back the throat and raise hands to the sky, to feel your whole self, every cell pressed forward in adoration of a God who defies our finite logic.  He has enslaved me to this place and this disease that I might worship Him.  He has constrained me and cut me off so that I can stand from a different vantage point, so I can witness Him from another angle.

Down the road from our house there is a sign that comes into view as you round the corner.  It is a historical marker that tells of Lewis and Clark coming through this very place on their journey to explore the west, to report back about this land so unknown to those far off in the East.  They told of mountains of such scale that they defied comprehension.  Likewise, Thomas Moran provided the first glimpses of the colors and landscapes of Yellowstone which seemed only possible in fiction.  I am certainly not the first to enter this land in which I now dwell, but I feel compelled to report back, to describe the colors of this place.  To be “a witness,” to “testify,” conjures up highly undesirable connotations in my Christian experience.  They are words from which I have always fled as they raise images of door to door salesmen.  But I can’t help myself.  I cannot keep my mouth shut, I am compelled to testify.  I am compelled to lend my voice as a witness.  The colors of dark, of black, red and grey cut and burn.  The smells sear into my memory.  But so too are there flashes of translucent purple, liquid honey yellow, tender bright new green and deep, deep blues of refreshing.  This is my frontier.  This is my land for exploring, of gasping terrors and vistas that dazzle so utterly as to render silence and gaping mouth.

There is so very little to put my hand to.  But I can do this – I can keep my eyes wide, my ears alert, my heart open, throat vulnerable, palms outstretched.  I can go on asking and asking.  I can be in need and delight as filling comes.  I can open my mouth and speak.  I can cry out – “Father, Father come back, oh don’t tarry, oh don’t hold back, do you see what horrors happen here?  When will you return and bring healing.  When at long last will this suffering cease?  Don’t tarry, don’t delay.  Mercy, mercy Lord.  I call for your mercy.  I boldly enter the throne room of grace and in the name of my savior Christ Jesus I call you Oh Living God of the Universe, oh You beginning and end, You alpha and omega, I am calling for You to be faithful to Your name!  And with smile that my flesh can’t contain, I can with faltering voice and lacking eloquence, declare the beauty of a good God whose good explodes that word in infinite dimensions and proportions because He simply will not be constrained by me and my little ideas and understanding.  I will walk through every day and every circle small and circle wide and ask that He show me His face, that He hold me up that I might see Him from valleys low and rock faces high and sweeping.  I want to see you Father in storm, in quiet clear dawn, in approaching evening, in forest glade and in desolate wilderness.  I have witnessed the Living God, the mysterious God who lacerates and binds up.  I choose to worship.  And this is worship: I choose each day to apply my heart, hand and mind to the work you have given me – to love Allistaire and to love every nurse, doctor, CNA, Unit Coordinator, Environmental Services worker, Starbucks employee and person that I pass in these halls with a love I ask The Lord to continue to grow.  Make my face radiant Father as I lift my eyes to You!

A couple little details:  The pictures showing Allistaire’s lines with blue is the Blue Thunder chemo (officially Mitoxantrone).  She’s completed 3 out of 5 days of chemo and is doing well – no throwing up, slightly decreased appetite.  Her fatigue has increased which means we’re back on the old schedule of a nice long afternoon nap.  All her labs look good.  The blasts have not reappeared which is to be expected as her blood counts drop.  Today both her platelet count and hematocrit were at about 25.  She will get red blood when her hematocrit reaches 20 and platelets when they reach 10.  At home she had just finished all of her meds with the exception of Enalapril for her heart, vitamin D and Multi-Vitamins.  She continues on these but now also has Fluconazole (anti fungal), Bactrim (antibiotic) and Allopurinol (helps clean out all the cancer cell gunk that spills into the blood during tumor lysis/death of cancer cells).  Every four hours she gets eye drops to prevent complications from high-dose Cytarabine. The picture of Allistaire with the other girl is our friend Piper who is now 10.  She was diagnosed with AML two weeks after Allistaire back in December 2011.  She relapsed in November 2012 and got a bone marrow transplant in February 2013 and is doing well.  Lastly, I have included a few old pics just to lend perspective. Note the same pink helmet from first diagnosis and a couple picks with Piper from diagnosis and first relapse. Only four more days until Sten flies in and five before Solveig, JoMarie and Lowell get here.  We are excited!!!


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Another little girl, so alike Allistaire


78664fa8-04b3-45d4-8744-03205fe8c0a2Friends, you dear people who have supported us so faithfully throughout this long and difficult journey…I don’t call you “dear,” lightly, you are precious and of great value to my heart.  You have been part of the great throng of people who God has used to hold us up through months and then years of struggle and sorrow, victories and defeats. You have been generous with your hearts, your time, your money and your prayers.

Today I implore you to pray on behalf of another little girl whose story so closely resembles Allistaire’s.  Now I am the one in your shoes, heart hurting from afar, prayers pleading up to heaven for God to show mercy, to make a way through and struggling to figure out how I can help.  Last December 2013, while we were in Seattle for Allistaire’s chemo and appointments, my friend Pam told me of a little girl named Stevie, who had just been diagnosed with AML.  She was just about 2 years old and was life flighted from her home town of Hamilton, Montana, two days before Christmas.  Her parents, Keshia and Michael, walked away from their life in Montana as students and joined Stevie at Seattle Children’s Hospital, to fight alongside her.  When I found out about this family, my heart and mind immediately was transported to our own horrifying December when our nearly 2-year-old beloved was diagnosed with AML.  I was able to contact Keshia and visit the three of them in the hospital.  I yearned, with a sort of desperation, to bring all that I had to bear to serve and care for and support these bewildered folk, whose story I so well understood.

Fortunately, Stevie went into remission after the first round of chemo, just as Allistaire did.  But the chemo weakened her heart and she was unable to receive the standard fourth round of chemo, the infamous big gun – Blue Thunder (officially Mitoxantrone which is combined with high dose Cytarabine).  Instead, she was given the FLAG regimen which is the standard first round of chemo for relapsed AML.  She continued to be in remission, finished treatment and moved home to Montana.  Sadly, this sweet girl only had two months of life at home until a routine blood test showed extremely low platelets and blasts.  Keshia and I were planning to meet up together in Missoula with our girls for lunch since I was headed that way to take Solveig to camp in June.  One day we were making lunch plans and excited to see each other and literally the next I was trying to take in the news that Stevie had relapsed.  I knew so clearly what relapse meant – transplant.  And I know what it means to have a transplant – first there is the hope that you can get into remission to even qualify for a transplant.  This process alone can take months.  Then you hope and pray for a match.  If you make it to transplant you hope the intensity of the chemo and radiation and all the possible side effects don’t take your child down.  Then there is the long, long trek out of that crevasse, trying to evade Graft Versus Host Disease while not endangering the body with defenses down because of immune suppressants.  The list of awful long-term consequences are something you can’t even begin to consider.  My whole heart went out to Stevie and her parents.

While  initially they were in Seattle for immediate care and confirmation of relapse, they quickly moved to Philadelphia for Stevie to be treated at CHOP (Children’s Hospital of Philadelphia), in order to be closer to family support.  Stevie’s heart had regained some strength thanks to Enalapril which is the same drug Allistaire has been on for her heart and will continue to be for up to five years.  So Stevie was now able to get Blue Thunder.  There was the long wait in the hospital for her blood counts to drop to zero and then for her ANC to rise again to at least 200.  Thirty-five days later, they were able to get a break and wait for results of the bone marrow test that would tell how effective the chemo had been at suppressing the leukemia.

Five days ago I got this text from Keshia, “Well we got the worst possible news today, the chemo didn’t do anything, and her percentage of leukemia is actually higher than when we got here.  And they said they will do another round (of chemo) but they don’t expect it to do anything and they don’t expect her to make it to transplant.”

This right here, this moment is when the dagger, hot, cuts right through your heart and you gasp and collapse and your eyes are wide because you cannot possibly begin to fathom what has just happened.  Every step before has been hard, excruciatingly difficult and wearisome, but this, this is an all together different reality.  You have now reached a precipice you wanted to block from your mind.  You have journeyed far and now you stand looking into a deep, black crevasse and you are absolutely terror-stricken.  You have not yet fallen and you hope desperately you won’t, but the possibility that you will be plunged into that suffocating, clammy darkness – it’s real, this is not a nightmare, this is your life and you feel yourself teetering and growing faint.

Not making it to transplant equals death.  There is no other treatment for relapsed AML.  If you are not in remission, you will not be offered the opportunity, the gift and horror, of transplant.  Why?  Because the odds are so low that you will survive, they won’t put you through it.

Every bit of Stevie’s journey comes at me in blazing, vivid detail of sight, sound, smell, touch.  I know rubbing your hand across the bald curve of your child’s head, of watching them sleep, of going to bed crying and waking with tears in your eyes.  I know the heaviness in your arms and legs that feels like you can hardly even stand.  My heart cries up to the heavens and pleads with the Lord, “Father, Father, please, make a way through for this little girl!  Have mercy oh God!  Hold up her parents.  Make your face shine before them.  Give them ears to hear your voice and pull their hearts to you.  Mercy, mercy, mercy oh God!”

This is the most recent update on Stevie’s Facebook page:

“Stevie’s leukemia did not respond to her re-induction phase of chemo. When we arrived at CHOP she had 26-36% blasts, and the results from her bone marrow biopsy tell us she now has 50-70% blasts. Whats next? We pray for a miracle. She is being admitted today for her next round of chemo, she has a 1 in 5 chance that her leukemia could respond. We pray for that to be the case, if not, we could potentially have to relocate to participate in a study, texas, Maryland, wherever we have to. Please pray for Stevie. For those of you who don’t know, Stevie has M7 AML which tends to be a little more unpredictable and harder to treat than other types of AML. Please pray for Stevie. You can help at youcaring.com/superstevie we are uncertain of the road ahead and need all of the prayers we can get.”

Please friends, I ask you, please pray for this little girl and for her mom and dad.  Please call out to the God of the Universe who is able to heal.  Pray for healing.  Pray that more than anything, Keshia and Michael would know the comfort that only He can give in all circumstances, even the darkest.  And please consider giving to them financially.  I know I have asked much of you, to give to further cancer research, and you have given so generously to our family.  I know there are many demands on your finances and so many worthy causes.  But here, here is another example of a child’s life, an otherwise healthy, happy, thriving girl, whose life is hanging on the hope that there is some medicine out there that will cure her, perhaps some clinical trial that will make a way through.

Allistaire was given a 5% chance of survival.  Her story is not yet complete, but she is alive, she thrives.  I hold out hope that Stevie can make it, no matter how small the odds.e93af59f-4cfd-4c15-86a1-07e4a354a7ed107284e6-a0a9-4bee-83c0-6da8d5162ca38e032fe0-c363-4dee-a20d-2f40e32d2fb36b9a4378-6273-4f53-bb7c-d344223dbbeb