Tag Archives: T cells

Lead Bellied Clouds

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IMG_0453IMG_0491The dark grey blue of cloud bellies move slowly east, sheets of rain stretching out, connecting sky to earth.  Thunder lumbers and bellows.  Rain hits hard on the roof.  A flash of lightning.  Quiet.  The storm moves on and the sky opens to blue.  To the west, to the south, the sun glints on the Spanish Peaks illuminating their vertical striations of rock and ridge, Beehive bright tucked behind.  Then shrouding of white, thin wisps of rain stranding from grey to light in the evening sun.

More thunder, cracks of power break open overhead, the darkness of more clouds heading this way.

“I don’t know how to do this,” I say to Dr. Cooper with a restrained wail in my voice, “I guess you have to just live each minute.”  There is always the before and after, a thousand points marked off, striating, separating then and now, what was, what is.  Eventually the “what will be,” becomes the “is.”  A hundred thousand test results, countless days and hours and minutes for the heart to beat hard with suffocating thud, anticipating the blade coming against your throat.  The wave rips you off your feet, dark weight pressing down on you, flailing, desperation to right yourself. Gasp of air and crashing wave grinding you down again and again.

Quiet.  Eery, odd, quiet.  Calm.  Flat face.  So this is how this goes.  This is how minutes amass to hours and days, months into years.  So this is how death comes.  This is how the thievery of your child’s bursting life gets stripped away, paint ripping in shreds from boards exposed too long in harsh weather, the slow erosion of flesh, the silent march of invasion.

Dr. Eagan, the PI (principal investigator) of the WT1 T-cell trial said Allistaire’s chloromas just amounted to too much disease to have hope that the T-cells would be successful, at least at this point.  In addition to the 6-7 chloromas in her spine, sternum and pelvis seen on the last PET/CT, four out of two hundred cells tested from her bone marrow aspirate showed Allistaire’s MLL (Multi Lineage Leukemia) mutation according to FISH (Fluorescence in situ hybridization).  The Flow Cytometry test showed 0% detectable leukemia in her marrow.  There was not even enough disease in the chloromas for corresponding masses to show up on CT.  Only about 5 years ago there would have been no detectable disease anywhere – there was no Flow Cytometry and PET scans weren’t used for leukemia.  Even a year ago Allistaire had never had a PET scan, only CTs to look for chloromas.  We would all think she was cancer free, in remission.  That was then, this is now.

Since we couldn’t move forward with the T-cells with any hope of success, the goal is to see if we can get her in a better spot.  Her heart is still far too weak to endure any intense chemo.  The accumulation of hard chemo has killed muscle cells in her heart that will never be replaced.  They are dead.  There is nothing new to replace them, only the hope that the surrounding cells can compensate for their loss.  The very weapon wielded against her cancer has cut her through, has permanently wounded her.  This is why there is no transplant on the horizon.  It is for now, off the table.  There is no plan to move forward with a transplant.

So Dr. Cooper, after much thought and consideration recommended the course of treatment that we have chosen to pursue.  She began five days of Decitabine last Friday which will be followed with three doses of Mylotarg (generic name: Gemtuzumab) on days 6, 9 and 12 of this round.  Gemtuzumab is an antibody which is bound to the chemo molecule, ozogamicin, which then binds to the CD33 antigen receptor on the cell surface of myeloid cells (which is the cell line that is cancerous in Acute Myeloid Leukemia).  Once the Gemtuzumab antibody binds to the CD33 antigen, the whole molecular complex moves inside the cell where the cytotoxic molecule, ozogamicin, kills the cell.  “Calicheamicins (of which Ozogamicin is a derivative) target DNA and cause strand scission. Calicheamicins bind with DNA in the minor groove, wherein they then undergo a reaction analogous to the Bergman cyclization to generate a diradical species. This diradical, 1,4-didehydrobenzene, then abstracts hydrogen atoms from the deoxyribose (sugar) backbone of DNA, which ultimately leads to strand scission.[6] The specificity of binding of calicheamicin to the minor groove of DNA was demonstrated by Crothers et al. (1999) to be due to the aryltetrasaccharide group of the molecule.”  I included that last bit from Wikepedia because I love the wild intricacies of our flesh.  And because I’m sick and tired of people offering me simplified cures for cancer.  Essential oils do not cure cancer. Juicing doesn’t cure cancer.  Cancer is a beast of a million, trillion heads with thousands of faces ever-changing, mutating, hiding and lunging out again to strangle the life out of you.

If you read about Gemtuzumab, you will see it has a dark past and was pulled by the FDA in 2010.  Allistaire is actually only able to get it on a compassionate use basis.  However, questions about the trial that caused alarm over its perceived toxicity and lack of efficacy, have shown that it may not have been the right move to pull it.  It has remained available in Europe and more recent trials have shown promise.  Allistaire will receive her first dose this Wednesday.  The primary concerns are immediate allergic responses like anaphylactic shock which she will be pre-meded with Benadryl and longer term concerns for her liver including VOD (Veno Occlusive Disease).

….That was Monday, today is Saturday.  In the week preceding Monday, Allistaire, Solveig, Sten and I drove east on I90 all the way home to Bozeman.  Dr. Cooper supported us going home for a visit – Allistaire’s first time home since she left in October.  Sten took the girls to clinic on Wednesday morning, July 1st so I could pack without them knowing in case labs were bad and we’d be thwarted at the last moment.  But labs were fabulous and when the girls opened the door, Allistaire asked why all the bags were packed on the floor.  “We’re going home to Montana for a visit, sweet girl.”  She was beside herself.  She couldn’t articulate her amazement and joy.  I’d say she was flabbergasted and it was the best.  I loved that joy.  After staying the night in Spokane as we have done so many, many times we continued on east through a land that all cells of my skin, eyes, hair, fingernails all sought to soak in, like dear friends with whom you have long yearned to visit – blue of Lake Coeur D’Alene, marshy grasslands before Cataldo in Idaho, my great big hill I plan to climb one day – a hill already turning yellow in summer’s heat but great and white in winter’s cloak and shocking purple in spring with billions of flowers of a name I don’t know, that curve of rock that repeats pinks and purples of setting suns, a great boulder over green water – a swimming hole I imagine diving into its cool deeps and drying out in the warmth of the rock, tumbling great rounded groupings of rock like a Flintstone landscape over Homestake Pass, the river bottom with Cottonwoods in Whitehall and up that great curve of road that will soon bring my eyes to rest on the Bridgers in the distance – the mountains that are mouth to my home, to Kelly Canyon with its aspens, Rocky Creek, Bridger Creek, magpies and coyotes, black bears and deer, scores of red-winged black birds calling their eery beautiful cry in morning and evening, pairs of sand-hill cranes who sound as if they have mistaken Montana for Africa.  There a multitude of colors of grass like waves moving in the wind over the contours of the land, punctuated by the silvery blue of sagebrush, that wondrous smell of moist coolness of night soaked up in their leaves and released like blessing.  At long last we were home, home.

Every joy paired with splitting pain.  The familiar strange smell of our house built in the 70’s.  Waking to light on the Spanish Peaks, light on leaves and flowers and the great evergreens on the hill, piercing blue of summer sky.  The feel of smooth tile underfoot as I stumble to my bathroom at night – no handicap bar just lush toilet paper.  Spying Allistaire sitting on her closet floor playing with her toys in the morning, her sweet blonde head ascending the stairs to greet the day.  Birdnest ferns and mother ferns, variegated leaves and leaves pink, leaves with purple, plump sculptural succulents and fuchsia of orchid petals, light broken in pieces of rainbow color by the prisms in the windows, the delectable breeze moving up the canyon and occasional ring of wind chimes.  Sitting down together for pancakes, four in a row along the kitchen counter.  Sending laundry down the shoot, into the wash and taking it out to the line to dry in the already hot day.  When I went into the garage I broke down.  Fishing poles and life jackets and bikes and buckets and pairs of little shovels and bug catchers and gardening gloves with childish patterns, hiking boots and a bike rack – a life once lived.  A life stalled.  A life paused.  A life cut short?  I think of going to Cliff Lake last year and my heart breaks open.  How desperate I am for the smell of campfire and the negotiation of how many marshmallows are reasonable.  I pant for Hyalite, for the simple extravagant pleasure of driving up that road and seeing water ringed by mountains, of packing coolers for picnics and the heft of a pack on my back as we ascend through the forest.  I watch the girls out the kitchen window, they head to the thicket of bushes where they made a fort last summer, the little blue bucket having finally been removed from the branch where it hung for months.  They play long with a caterpillar, lovingly making it a home to enjoy and hit jackpot when I find what I told them was a baby mouse, but I now think must have been a vole.  They carry it back and forth with gloved hands, tender in their care and wonder.

We had a wonderful week all together and time with family.  On her last evening home, we celebrated sweet Per’s third birthday.  Allistaire rode the tricycle in her yellow dress with great blooms – a french girl’s dress.  Up and down the sidewalk she went.  At last it was time to say goodnight, but not just goodnight, goodbye.  And I watched as simple hugs and goodbye’s were exchanged and suppressed the desire to cry out, to yell – “do you not realize you may never see her here again?”  Every joy sat side by side with the fear that these days would never be again, that I was witness to the lasts of many things, things simple, things mightily beautiful, treasured beyond all else I possess.  Next to the image of her yellow dress and happy face in the waning light sat deep sadness that she was alone, no one to play with, a child who has so seldomly been able to play with her peers, with really any children at all.  The older two, Solveig and Haaken, were off on their big kid adventures and Per was enamored with the little neighbor girl.  Next to the image of her that night, an image of seeming lighthearted joy, sat images of Carly’s face with tumors bulging, pressing tight and purple and shiny taut against the skin, eye distorted.  I saw Benton’s face deformed by numerous tumors that contorted his features.  I saw his face laying in a casket as I filed past, tears streaming.  I knew I had seen something that terrified me.  Something I wanted to ignore, to disregard, to cover with more plausible explanation, but I turned back to it over and over and over, examining, questioning – what do I see there?  Something seems off.  Her right eye, something is not right, something is not normal.  What is it?  What am I seeing?

Sten drove her back to Seattle on Thursday so she could begin chemo on Friday.  He came to Allistaire’s appointment with Dr. Cooper with a list of questions I had, questions with answers relayed and more questions lobbied back.  Nestled in amongst the questions of did we really know if Allistaire’s cancer expressed CD33 and how do you know how many days and on what days to give Mylotarg, was the question, do you see something off with her right eye?  Yes, ptosis, a droopy or falling eyelid, an effect on the muscles of the eye.  Sten’s voice on the phone, “He ordered an MRI.”  “Oh God, why?  What is he thinking it might be?”  Later Dr. Cooper and I talk on the phone and he was concerned.  It could be a tumor pressing on nerves in her spine or in her brain.

For days Solveig and I were alone.  Just the two of us.  Just like old times.  Times when she was my little buddy and we went everywhere, just the two of us.  How dear she was to me, how overlapped with my life.  Then I had a miscarriage, a DNC, months of trying to get pregnant again, fear of miscarriage all over again.  Sorrow, fear, acrid poisons seeping into the crevasses of my heart and mind, weighing down my finger tips and shoulders.  Sober.  A turning.  I couldn’t laugh as easily.  Other private wounds and weeping added one to the other, layers pressing down.  Desperate cries to the Lord, a turning to the Lord like never before.  My first tastes of Christ as my very life, Christ the very fuel of my cells, the brightness of my eyes, my longing, my aching need for Him and the sweet, sweet knowing of really tasting the beauty of the Lord.  Sober.  Deep expanses opening up, being broken open down into the very core of myself.  A fundamental tearing, sinews strained and snapping, bleeding out, faint.  In these four plus broken years I’ve felt too weak to love Solveig as she deserves, as I long to love her and gosh, oh man do I love that girl.  I hunger for her eyes, her giddy laugh, her brown ringlets she desperately wants straight, her skinned bruised legs from play, the magnetic irresistible draw of books, of stories for her budding mind, her unstoppable creativity, the ever request for a back rub.  I love Solveig Kailen Anderson and I have missed that girl.  I have missed so much of her life because of all this with Allistaire.  When she was only as old as Allistaire is now, we sent her to Montana to live with her grandparents while I fought alongside Allistaire in the hospital.  The first relapse meant 8 months away from home and four plus more months of constant week-long trips back to Seattle.  This relapse it’s already been 9 months with no end but the worst in sight.

For three weeks I had the joy of being with Solveig, the most time I’ve spent with her in all these nine long months.  When at last Monday came and loomed as the day I would lay down to sleep knowing something more, something of that eye, I talked with Solveig.  I attempted to prepare her for what may be coming.  Dr. Cooper called around 5:30pm.  It’s not in her brain, but there is a 2 1/2 cm mass of leukemia in her right sinus.  It has begun to erode away the bone.  The tumor, the chloroma, is putting pressure on the muscles which operate her right eye, that’s why it doesn’t look right.  Right there.  Right there smack in the middle of my little sweet girl’s face dwells an insidious tumor that threatens to take more, to distort, to ravage, to gnaw.  There is also a very small one in her left sinus.  Dr. Cooper knows of children in which the leukemia eats away the bone into the brain.  Why Lord?  Oh God please, please don’t take her this way.

With shoulders slumped I came to face Solveig, to tell her this latest revelation of the onslaught of Allistaire’s disease.  I asked her, gently pleaded, be kind to your sister.  You don’t know how many days you may have with her.  Don’t fight over toys.  Treasure her, for one day we may have no medicine left to stop her cancer.  One day we may need to bring her home to this house to lovingly surround her as she dies.  I tell Solveig that she will not be the same girl she once was.  She may not be able to walk.  Her face may be distorted with tumors.  Her eyes may not work.  Will she be able to speak?  The imaginings are so brutal.  It just ravages my heart to imagine this for her.  Oh God it hurts, it hurts so bad.  Solveig is silent and then sobs heave and tears stream.  I hold her close and grieve time lost and a possible future without her sister.  How I so loved the thought of two sisters growing up together.  Solveig by herself, just another sorrow, another gaping wound.

The thing is, I can see on the other side of these brutalities.  I can imagine a life filled with joy.  I can imagine being close to Solveig, years ahead together.  I believe that there would be a day far off in the future where losing Allistaire wouldn’t decimate every day.  But to get there, to walk the possible road ahead, oh how overwhelming, how utterly horrid.  It is like facing the blackest tunnel, believing that it will eventually open up to light, but Oh God, how far, how long?  You think, I can’t do that Lord, I just can’t bear the loss of my sweet little girl – you think this is some sort of barrier to it actually happening.  I look at her little face, with that one eye askew, having many, many times a day to face that beast that is taking her.  I love her.  My whole flesh cries out – I love her TOO much!!  I just can’t lose her.  But neither is my love sufficient to hold her.

For twelve days, I soaked up Montana.  I brought my bike and at long last made friends with it.  I actually now crave being able to get on that seat, feet clipping easily into the pedals and heading out onto the curves of my dear Kelly Canyon.  I imagine the many adventures that bike opens up to me.  Morning after morning I went out into the land with vast expanse of sky opening up overhead.  Glory.  Absolute resplendent beauty.  My sweet mother-in-law, JoMarie, so generously gave me her bike, an orange bike, a bike built for Obliteride, a bike to carry my flesh into God’s wondrous creation and a means to raise money to heal the sick.  I had a fitting done at Bangtail Bikes in Bozeman and then it really became mine – it is now aligned to my body, to my outward self, propelled by the inner.  Then Wednesday morning, as the first light shone blue behind the Bridgers, Sten took me to the airport.  We embraced hoping not to see each other before planned in August, desperately hoping some new horror would not rise up in the next few weeks.  Back to the battlefield, back to a strange life of seeming ease where I regularly drink Starbucks and sit around, but just below the surface, if you have eyes to see, is an effort of epic proportions, an unyielding fight, a straining, a grasping for life.

I returned to Seattle on Wednesday morning because Allistaire had an echocardiogram and cardiology appointment scheduled in addition to her first dose of Mylotarg.  I went straight from the airport to Ron Don to drop off my suitcase and then walked as fast as I could to the hospital to make it in time for Allistaire’s labs.  How strange to wake in my bed in Montana and so suddenly and utterly cast into a different world.  The best news of the day was that Allistaire’s heart has gotten a wee bit stronger!  Her ejection fraction rose from 29 to 36 and her shortening fraction from 16 to 21!  It felt like finally being able to breathe a bit.  But blast, just as we’re making some progress with her heart, her cancer is on a rampage, spreading in terrible places with still not much to combat it.  Later in clinic she received Tylenol and Benadryl as pre-meds for the Mylotarg.  Allistaire promptly fell asleep for the next four hours while I finally had a bit a lovely down time.  Thankfully she had no reaction to the infusion and all seemed well.

After ten hours at the hospital, we finally made it back to Ron Don and I was straight worn out, having gotten up at 2:30am Washington time.  Having slept so long, Allistaire completely missed lunch and now I had only a short bit of time to get dinner and meds in her.  On top of it, about 8:30 that night, I noticed she felt hot and the thermometer read 102.6.  Well, they were expecting this right?  This is why I was given a third dose of Tylenol to give her as instructed at 9:30pm.  The truth was I was wiped out and dreaded the fiasco of having to call the Hem/Onc Fellow to report the fever which I knew would result in being sent to the emergency room for blood cultures and possibly admission and antibiotics. Dr. Tarlock had warned me on Tuesday night that she may need to be admitted on Wednesday since her phosphorous and potassium were rising, signs of tumor lysis.  She may need to be monitored, but her labs had improved on her own and we had skated by.  But not calling in about the fever was a major failing on my part, really a huge mistake for any parent of a child with cancer.  We finally went to sleep after she threw up a wretched medicine twice – a medicine meant to bind with potassium.  I already had a laundry bin full when she had diarrhea twice as well and I had to change the sheets.  In between all the wakings that night, I continually took her temperature and watched it steadily descend to normal.  It was just because of the Mylotarg I told myself.

We were back to the hospital Thursday morning at 8am for electrolyte labs.  So here’s the deal, when chemo destroys cancer cells, the cancer cells lys – they die and break open spilling all their guts into the blood stream.  This is tumor lysis and it is detected by rising levels of potassium, phosphorous and uric acid.  It becomes dangerous when these electrolyte levels rise steeply, beyond the limits of what the kidneys can process.  Then you see the creatinine and BUN (Blood Urea Nitrogen) levels rise which indicate injury to the kidneys and the potential for kidney failure.  High levels of potassium can also cause arrhythmias of the heart.  So when Allistaire’s labs results returned this past Thursday morning, it was game on time.  Dr. Tarlock and Dr. Cooper were amazed to see overwhelming evidence of tumor lysis with all levels skyrocketing.  We were going to be admitted.  Then the plan intensified with measures being taken to have an Interventional Radiology surgeon install a second central line into Allistaire with the aid of Cardiac Anesthesia for the purpose of her beginning short-term dialysis immediately.  The goal was to respond quickly to this acute kidney damage and prevent kidney failure or long-term kidney damage by taking all of the burden off of the kidneys.  Because of Allistaire’s heart failure, her heart would not be able to endure the huge amounts of fluid that would be necessary to help the kidney’s flush out these electrolytes.  And because the kidney’s were already hurt, they could not endure the assistance of Lasix to remove the fluid.  So really, dialysis was the best option.  By 3pm we were once again in the ICU, this time in Forest level 5 room 321, exactly one floor down from where we spent 80 days in the ICU before.

In the time we waited for everything to be arranged, Dr. Tarlock consulted with cardiology about how much fluid Allistaire could handle on her own and she began receiving just 60ml an hour of saline.   To lower Uric acid levels, she was given a dose of IV Rasburicase.  She was also given Sevelamer to bind with phosphorous.  The problem is, Sevelamer can only bind with phosphorous in the gut, not in the blood stream.  Because Allistaire’s phosphorous was so high, Dr. Tarlock feared this would not be enough and we would need the aid of dialysis.  At last we were settled in our room in the ICU.  Yet when the labs drawn at 2pm came back, everything was trending in a much more positive direction due to the interventions already taken.  About ten minutes into a fascinating conversation with the Interventional Radiologist about collateral veins that a young body like Allistaire’s form when other veins are damaged, the ICU attending came in to say we were going to hold off on dialysis for now and continue to monitor labs.  It ended up being a crazy short and remarkably easy ICU stay.  Basically Allistaire just watched movies, got her meds and some IV fluids while I tried to get food in her and grumbled that I couldn’t eat in the room.  Because Allistaire was scheduled to get her second dose of Mylotarg on Saturday, we were just going to stay inpatient through Sunday with frequent labs to quickly deal with any issues if they should arise.  Friday morning we were to transition upstairs to the Cancer Unit except that they had no rooms available.  Finally on Saturday afternoon, we moved upstairs to the Cancer Unit into the radiation room – a room specially designed to give MIBG radiation to neuroblastoma patients.  It is a lead-lined room with most surfaces being stainless steel.  It’s not the most cozy room and the bed is about a foot to short due to having to accommodate the thicker lead walls.  But it meant getting the show on the road and I didn’t care.  I just wanted to get the Mylotarg in and get out of the hospital.  At long last, on Sunday afternoon we burst out of the hospital into the blaze of a 95 degree day, having completed the second dose of Mylotarg with absolutely no issues, no fevers and labs still looking great.

Yesterday, it was back to the hospital for labs and possible platelets.  I was pretty sure Allistaire would need them because of the small purple pricks of petechiae (tiny broken blood vessels) mixed in like a new wave of freckles on Allistaire’s cheeks.  A single round purple bruise adorned Allistaire’s forehead right between the eyebrows like some new-age tilak mark, in this case having bonked her head on the bar of the Target cart which she was eagerly driving when it rammed a shelf.  Sure enough, her platelets were 5 and so we spent the morning at the hospital getting her all tanked up.  Today we head back into the hospital again for labs and her third and final dose of Mylotarg.  Tomorrow, yet again, for the twelfth day in a row, we will be in the hospital for her clinic appointment with Dr. Cooper.  From there…well, we wait for her marrow to eventually recover, hope no infections get her and eventually plan to do another bone marrow biopsy and PET/CT to see how things worked.  After that?  Who knows.  If she were miraculously clear of cancer, we might be able to proceed with the infusion of modified T-cells (this is not a transplant).  If she has a partial response to the Mylotarg, it may make sense to try another round of it.  If there is no response or her disease has progressed, well, it all depends…of course we would investigate all our options for other treatment or the woeful possibility of being done.

Honestly, the next several weeks terrify me.  Obliteride is coming up – only 17 more days.  I wonder what life will look like as I ride that day.  By the way, I reduced my route to the 25 mile because I just haven’t had the time to train as needed to make the 50 mile enjoyable.  Three years ago on the afternoon before Obliteride, I was told that because Allistaire had disease after transplant, that she had a mere 5% chance at survival and probably wouldn’t even live 6 months.  I was decimated, inside and out, that day as I rode on my old mountain bike.  Last year, I physically had a hard ride, not being prepared for the 50 mile, but was propelled with determination to finish in light of all the pain and hardship Allistaire had endured.  But I rode that day with hope – having had Allistaire declared cancer-free only two months prior.  This year, who knows.  These are very scary times.  The Obliteride folks had invited Allistaire to be part of the Friday night kick-off party, but as her disease has progressed, I’ve had to say no to this, not knowing where things will stand on August 7th.

A little girl, Melissa, that I knew through friends, died of AML a week ago.  Last night, my friend Kiesha and I talked as she got back labs in Missoula.  It looks like Stevie has once again relapsed with AML and they will head back to St. Jude’s today or tomorrow.  As I was praying for her yesterday, knowing she was trying to get labs because of all of Stevie’s bruises, I put myself back in that place of waiting for news of possible relapse.  You have at long last returned to the magnificence of a “normal” life.  You gaze at your child in a way that no parent of a healthy child can fully imagine – your whole self rejoices at the smallest normalcies, ordinary becomes spectacular pleasure.  But when signs creep in that something is awry, the stinging is fierce and unrelenting.  It is like watching a black storm on the horizon, you see it coming and you know it is about to engulf your life and twist and spin and splinter you and your beloveds until at long last you are spit out on the ground, broken, with the life pummeled out of you.  It is a tsunami that sweeps you away from your life in an instant and you are put back in that place of fighting every day for life.  To just simply live is all you want.

I long for a better way.  I long for a day when cancer isn’t a ravager, a likely sentence of death.  I long, oh I ache, for a day when the way you fight cancer doesn’t cost so much life and destruction of beautiful body parts like ovaries, and hearts and brains.  I see my child.  I see the children of my friends.  A few have been released back into glorious life, but many stumble around from the horrific effects of radiation to the brain, limbs cut off, hearts faint, and some in caskets.  Cancer is the number one killer of children by disease!  I have asked many times, and I will ask again.  There are so many, many worthy places to invest your resources, your money.  But I am asking if you would consider giving it to further cancer research?  One in two men and one in three women will get cancer in their lifetimes.  You may be the one desperate for a better way, and if not you, it is almost certain that someone dear and close to you will be aching for a better way to eradicate, obliterate, cancer from their life.  Cancer is personal, it comes in close to each of us.  Will you join us in putting our resources to stopping this foe?  One hundred percent of all the money given to Obliteride directly funds cancer research at Fred Hutchinson Cancer Research Center.  Do you live in Bozeman?  Do you know that the Cancer Center at the hospital is part of the SCCA – the Seattle Cancer Care Alliance which is a collaboration of Fred Hutch, the University of Washington and Seattle Children’s?  Giving to Obliteride directly opens doors for clinical trials that you in Bozeman may need!

Thank you SO much to the over one hundred different people/couples/groups that have already given to further cancer research in my name through Obliteride!  Yesterday, you helped me surpass my goal of $15,000.  But I know there are many of you still who profess your love for us, your desire to support us in any way, who have not yet given.  Would you consider honoring Allistaire’s fight in this way?

Click HERE to donate to Obliteride and directly speed up cancer research!

The research is taunting.  It is moving at such an amazing pace, but I often fear Allistaire will just barely miss the thing that would at long last put down this beast of cancer.  You don’t want to hear it.  You think I’m crying wolf.  And oh how I long for you to be right.  I long for the Lord to once again make a way through for Allistaire.  I know, I absolutely know He is able to heal her.  I listened to the Nigerian woman tell me to pray, to fast, to believe, to test the Lord and demand He heal her as she has done for her son who is getting a transplant for Sickle Cell.  She proclaimed her faith in the Lord’s ability to heal, over and over and over.  But that seems too simple to me.  I just don’t believe in some magic equation where enough people pray or my faith is somehow the right degree of strong and then out pops what I want.  God is too big for that.  He is too vast and complex and when it comes down to it – He is just OTHER than me.  He is utterly “other’ and His ways are not my ways.  I don’t begin to know how my little life and my little child are woven into His great plans.  But the thing is, I do, I do believe they are part of the bigger picture.  I don’t believe our “littleness” equals lack of significance.  And what is the purpose of my life, of Allistaire’s?  Is it not our great joy, fraught through with pain, to direct attention, to illuminate more the beauty of the Lord?  God does not need more glory.  He is not some pathetic being needing me to build Him up.  No, WE need to see the glory of the Lord!  We humans need to see Him for who He is that WE MAY LIVE!  That is why I yield my life to the glory of the Lord – because I love, because I know my own great need to be engrafted into His life blood, that I MAY LIVE!  And not just live, but live an abundant, eternal life.  And in turn, I am honored that my life may in some small way direct attention to the radiance of Christ as the only source of life!  May I be so audacious as to link my life to Christ’s?  Is this not exactly what Christ did on an epic scale?  He suffered and He laid down His life that life might spring up from His death!  This is the “otherness” of God!  Out of Christ’s death, the ground soaked by His blood, God overcame sin and death!  He resurrected the life of Christ and in so doing made the way for redemption!  Is there anything more wondrous, more mind-blowing, more exploding with glorious beauty than this?  THIS is what I am invited into!  In my own power, this awful road with Allistaire is just suffering, is just agony, is just death. But God is at work!  He is alive and HE will take this heart of mine bleeding out as He may not remove this cup from me and He will accomplish life!

I lift my eyes to these wonders.  Sometimes I am too frail and weak to even open my eyes and I need the Lord to come down low and tenderly care for me.  I went to church with Jo in Bozeman and heard God’s word preached for the first time in a long time.  I was reminded of God’s otherness. I was reminded of the way He blasts my rational understanding to pieces and shows me a better way, the way of life.  I could hardly sing the worship songs.  I just cried.  I cried because the last time I was in that place was to honor Jens’ life and to mourn his death.  I cried looking at the man playing the drums, wishing so desperately it could still be Jens.  I cried because the words of those songs were just too much.  “There may be pain in the night, but joy comes in the morning.”  Oh Father, oh Father, how long is this night?  The joy seems ever so far off – is there even a glimmer of light on the horizon?  Words about how our life is not our own, how we give it to the Lord.  That sounds nice.  You can agree to that right?  Your life is the Lord’s.  How lovely.  You sing it out with beautiful voice.  Sobs fill my throat.  Oh God, oh God, I do yield, I do lay down at your feet, but it is agony, it is ravaging, it feels like brutality.  I cry out with Christ.  My God, my God, why have you forsaken me?  But I am given light on the horizon, the smallest hint of turning, I am given hope that this night will end.  I read in God’s word beyond that black moment on the cross.  I read of resurrection, of redemption, of light unyielding.  I stake my life in the hope of God’s promises.  I have tasted of the Lord and I will not turn back.

Where shall I go from your Spirit?
Or where shall I flee from your presence?
If I ascend to heaven, you are there!
If I make my bed in Sheol, you are there!
If I take the wings of the morning
and dwell in the uttermost parts of the sea,
even there your hand shall lead me,
and your right hand shall hold me.
If I say, “Surely the darkness shall cover me,
and the light about me be night,”
even the darkness is not dark to you;
the night is bright as the day,
for darkness is as light with you.  (Psalm 139: 7-12)IMG_0391 IMG_0403 IMG_0411 IMG_0418 IMG_0428 IMG_0441 IMG_0447 IMG_0449 IMG_0450 IMG_0452 IMG_0456 IMG_0465 IMG_0468 IMG_0469 IMG_0470 IMG_0479 IMG_0480 IMG_0481 IMG_0511 IMG_0521 IMG_0524 IMG_0530 IMG_0535 IMG_0539 IMG_0541 IMG_0543 IMG_0548 IMG_0549 IMG_0551 IMG_0555 IMG_0562 IMG_0565 IMG_0574

Consent

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IMG_3193There is a woman on the other side of the earth who has offered up her life to my child TWICE!!!! Allistaire’s bone marrow donor from June 2013 has once again made it possible for Allistaire to have another chance at life!  The unrelated bone marrow donor search coordinator just called to say that consent has come through from Allistaire’s donor to use the remaining stored cells, from her original donation, to be used in the WT1 genetically modified T-Cell trial!  I am in awe and mind-blowing crazy thankfulness for her generosity and compassion!  Thank you Thank you Thank you woman out there who I long to one day thank in person!!!!!!

It will take a few days to coordinate the paperwork and begin the cell processing.  The cells should be ready in about 6 weeks but must be given in coordination with Allistaire’s chemo schedule.  There are certain thresholds for count recovery (recovery of her blood counts/marrow) written into the protocol that must be met before she can receive the T-cells.  It would be ideal if the T-cells could be ready at just the right time to be given to Allistaire once she’s sufficiently recovered her counts so that the cells do not have to be frozen and kept until she’s ready.  We want MAX viability of those cells!  We want them as agro and hard-core as possible!  But it’s all a guessing game.  Today marks two weeks from the beginning of this chemo cycle.  Last time it took 9 weeks from the beginning of one round of chemo to sufficient count recovery to begin the next round of chemo.  Of course we can’t predict what her body will do this time.  It could take longer, it could recover quicker.  But if they began the cell processing in the next several days, we would be right at about 9 weeks from the beginning of this current round of chemo when the cells could be ready – it could work out beautifully.  I’d really like to avoid yet another round of chemo.

I am overjoyed!  Thank you Father above!  Thank you for overcoming what seemed an impossibility!!! You can read about the wonders of Allistaire’s transplant and this woman’s generosity from two years ago HERE.

Also, if this blows your mind that this woman has been able to offer life to Allistaire TWICE and you think – WOW! that’s so cool!  Guess what?  You too can give this gift to another person!  Go to Be The Match and sign up for free to be on the registry to be a bone marrow donor.  Sten has actually been called and he is the backup person for someone who needs a donor – if the prime person selected falls through for some reason, Sten is going to have the opportunity to donate his marrow!  What a glorious gift to offer your life to another person, a stranger!  It is just so seriously beautiful!!!IMG_2932IMG_2974 IMG_3267 IMG_2954

Get STOKED!

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The above three pictures are of Allistaire on February 4th in 2012, 2013 and 2014.  Each of the last 4 February 4ths she has either been in treatment or about to begin again due to relapse.

Today is World Cancer Day.  Today is a day to take note, to lift up your chin and force yourself to look cancer in the eye.  Because let’s be real, most of the time we want to look the other way and pretend we don’t see that dark shadow looming in our periphery.  Look around at your life – how many of those you love have been touched by cancer?  And I don’t mean “touch” in the desirable sense.  Maybe impaled, scarred, lacerated, bruised, wounded, ravaged.  Maybe these are better words to describe cancer’s impact. Yes, cancer has also brought a lot of good in my life, but I will not for a second pretend that I wish cancer on anyone.  How can I not desperately want cancer to be stopped, forever?!  And it’s not just Allistaire.  It’s my sister-in-law who didn’t have her mom there when her sons were born.  It’s my friend Megan who lost her baby because of her own cancer.  It’s my aunt who had to make the hard choice to have a mastectomy because her mom died of breast cancer.  It’s my cousin who has decide whether or not she must cut out parts of her body because she bares a gene known to show high risk for breast cancer.  It’s my friends’ sad, weary eyes that long to have their child back.

Today I bring you videos to tell the story.  The first was made by our friend Abi who was in treatment with Allistaire, also with AML.  I love this video because it is a window into our world.  I love this video because it’s full of faces dear to us.  But what I can’t ignore is how many faces are now gone, dead.  Cancer does not leave one unscathed.  If you make it out alive, one almost always bears the scars and damage of treatment.  The second is of a little 3 year old boy named Ben who died of neuroblastoma.  Out of the deep well of their grief, his parents started the Ben Towne Foundation which is linked to Seattle Children’s Research.  The goal is to find cures for cancer that do not rely on chemotherapy and radiation and to accelerate research to get to real patients who are desperate for options now.  The next three videos provide a window into one of the most thrilling and promising areas of research today – the idea that researchers can genetically modify our most powerful fighting cells, T-cells, to identify and destroy our individual cancer cells.  Lastly, to lift your spirits there is the “Stronger,” video filmed on the cancer unit at Seattle Children’s while Allistaire was in treatment the first go around.  Life is worth fighting for.  These kids are worth fighting for.  Your mom and brother are worth fighting for.

If you’d like to tangibly support cancer research, I invite you to support me in Obliteride which is a fundraiser bike ride for Fred Hutchinson Cancer Research Center.  Every dollar you give goes directly to cancer research.  There are a number of very worthy places to give your money to support cancer research.  I have chosen to focus my efforts to support research at Fred Hutch because Allistaire’s life has been directly sustained by their research through the clinical trials that have yielded her last transplant and holds the promise for her cure with this next transplant and subsequent T-cell trial.

Click HERE if you’d like to support me in OBLITERIDE – accelerate the cure and put an end to cancer for good!

Look At Me Now

The Story of Ben Towne

T-Cell Therapy Explained

Fighting Fire with Fire

The Mighty T

What Doesn’t Kill You Makes You Stronger

 

 

A Thousand Barricades

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IMG_1926Written yesterday:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Dread, Hope, Dread

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IMG_1612I know I should go to bed but I know that when I do, tomorrow will hasten its coming.  So fast it will fly and then we will have arrived on the threshold of that day we must enter the hospital.  I strain to slow my steps as though I can with force of will prevent the series of events which will come, which must come to bring us to Wednesday morning.  The halls are bright with light and the colors, blue, orange, green are meant to be cheery, modern.  But to a prison cell it feels we are being sent.  And the dread is not because of the annoyance of people perpetually coming and going or the fact that we are closed into a tiny space where no normal advances of life can take place, where we are stunted in 4 hour cycles of vitals.  No, that is endurable, that is bearable.  The dread, though weighty, sinks slow and silent, settling firmly in my heart, in my gut.  Will she ever leave again?  Will the sweet small child who walks through those doors ever, ever return?  I KNOW what happens in that place.  I know what terrors lurk.  I feel as though I’m walking my child to the gallows.  I’m doing this, in her innocence, I lead her into that place.  But I have no other choice.  I must hand her over.  It’s breaking my heart to know what will soon be done to her, again.  How can she endure?  She is so small.  And she must do it all over again for a second time.  My heart tears with screams – how can I be forced to choose between these poisons and destroyers of chemotherapy and radiation, and her death?  Neither are good!  I despise being crammed in this wretched crack of murderous choices.

But I yield.  I take her by her small, warm hand and I will lead her in.  It does not take long in the fight against cancer to know so clearly how each step forward is gift, pure, free, underserved, gift.  For you see those falling away around you and you know how very fortunate you are.  The sun has shone upon you, you are the blessed and you have absolutely no room to grumble or complain – for you still stand.  I don’t know what the days ahead may hold.  I don’t know how long we will be locked in that place or if ever, ever my beloved Allistaire will come out, marred, but alive and radiant.

This morning we went to clinic and Allistaire had labs drawn, then we saw the nurse practitioner.  At the end of the appointment we had the joy of having Dr. Gardner come by as well.  She was able to relay the discussion regarding Allistaire that the Hem/Onc and transplant doctors had this past Thursday.  They agreed to prioritize a clinical trial transplant whose aim is to reduce Graft Versus Host Disease (GVHD).  Based on Allistaire’s HLA (Human Leukocyte Antigen) typing, they are optimistic that they will be able to find a 10 out of 10 matched, unrelated donor that will fulfill the protocol’s requirements.  The trial is testing the efficacy of removing “naive T cells” from the donor cells and returning the remaining cells to the patient, leaving the memory T cells.  For those new to bone marrow transplants, the idea is not only that you myeloblate (utterly destroy) the patient’s marrow in the hope that you also destroy the cancerous cells, but that the real beauty of transplant is mythical GVL (Graft Versus Leukemia).  When you receive the infusion of the new donor cells, these cells enter the patient’s body and sees their body as foreign.  The immune system is created to search out and destroy what is foreign and unwelcome.  This means that both healthy and cancerous cells may be attacked.  The attach of healthy cells is known as GVHD and the attack against cancerous cells in the case of leukemia is known as GVL.  So this transplant is designed to remove the T cells that indiscriminately destroy and leave the rest.  While I love the thought of less GVHD, I asked Dr. Gardner with concern, whether or not such a transplant would produce diminished GVL.  With a smile, she said, no, they don’t think so, they have had very promising results.

Another upside of this transplant, is that with diminished risk of GVHD, there is a greater likelihood that Allistaire would be in a better position to receive the infusion of the modified TCRs (T cell Receptor).  When you have GVHD, one may need to go on immune suppressants, often steroids, to reduce the immune response of the T cells.  The most common places under attack are the skin, liver and gut.  It would make no sense for Allistaire to receive fancy, modified T cells only to suppress them with steroids, rendering them ineffective.

Perhaps the greatest ray of hope, came with the words, “transplant without remission.”  It sounds like the transplant doctors are still willing to go ahead with this transplant, even if Allistaire is not in remission.  To qualify for the trial, Allistaire would have to have 10,000 or less circulating peripheral blasts, a 10 out of 10 matched, unrelated donor, and generally be in good condition (organs functioning well, no out of control infection, etc.).  Dr. Bleakley, the principal investigator for the trial at Fred Hutch, does not view Allistaire’s chloromas (solid leukemia outside of marrow), as disqualifiers.  Of course it would still be optimal for these spots to be gone or substantially so, but their presence would not close the door for her.  It may mean, however, that she would need focalized radiation to these locations in addition to TBI (Total Body Irradiation).

Suddenly, the yellow walls of the room felt fitting for the hope swelling in my chest.  There may be a way through.  There is a ray of hope.  That is what I needed to face an indefinite inpatient stay.  Knowing there is hope, spurs one onto fight.  Before this conversation with Dr. Gardner, it just seemed like this was all doomed to fail which made it all the harder to willingly walk into that lock-down prison.  Good fortune continued with Allistaire drawing her first person and getting bumped up in the schedule for her “back poke,” where they test her spinal fluid for leukemia and inject a chemo, cytarabine.

Allistaire had just been wheeled into the recovery room where they practically kick you out 5 minutes after a procedure, when our nurse practitioner walked in with the lab results.  In the appointment we’d had everything back with the exception of the ANC (Absolute Neutrophil Count) which always takes longer.  All her labs had looked great, despite her falling blood counts which are naturally to be expected because of the advance of her leukemia and the chemotherapy.  The ANC was fine, 1022.

The absolute smack in the face was the presence of an Absolute Blast Count – 68.  Blasts are immature cells and they can be completely normal depending on their location and number.  Blasts in the peripheral blood, and of more than just a few, are most likely leukemic.  There was that wretched number declaring the very real increase of her cancer, such that it has pushed out cancer cells into the bloodstream, and this, even in the face of seven days of chemo.  Now, Decitabine is not a hard-core chemo, is known to take a while to be effective and is not what we are relying on to get her cancer into remission.  Yet, it makes you want to throw up on the spot.  Blasts are the harbinger of things grossly out of control in the marrow.  Their presence stings and burns the mind.  Blasts were the evidence that every round of chemo prior to her first transplant had failed.  It is not an overstatement to say that they strike terror.

All the hope I had known in that yellow room thirty minutes before, seemed to have been violently suctioned away.  I felt panic and desperate need to talk to Dr. Gardner about this most wretched development.  She appeared shortly and said in short, “I don’t want to blow it off, but it does not add to my level of concern.  It does not surprise me and it doesn’t change our plan.”  She affirmed all of my assertions regarding Decitabine that I had quickly thrown together in my mind.  Well, I would have felt a lot more free-spirited joy had those blasts never shown their ugly faces, but all hope is not lost.

For now it is late, but I have one last morning to sleep in and snuggle with my girl, just the two of us.  No lights, no pumps or beeping sounds, no interruptions for vitals.  One more morning and day of seeming normalcy.

For more information on the transplant trial, click the link below.  The trial for the modified TCRs is below that.

Selective Depletion of CD45RA+T Cells From Allogeneic Peripheral Blood Stem Cell Grafts for the Prevention of GVHD

Laboratory-Treated T Cells in Treating Patients With High-Risk Relapsed Acute Myeloid Leukemia, Myelodysplastic Syndrome, or Chronic Myelogenous Leukemia Previously Treated With Donor Stem Cell Transplant

Explanation of TCRs from the Juno Therapeutics Website

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