Tag Archives: Seattle Cancer Care Alliance

Post T-cells

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IMG_1107I wonder how many times a day I see a bald head, a sweet face with that pale yellow tube leaving the nose, taped across a cheek.

September is Childhood Cancer Awareness Month.  My Facebook feed is literally packed full with pictures of kids with cancer.  Some with bald heads and sporadic hairs, tiny emaciated bodies, dark circles under their eyes.  So many dead kids.  Accounts of brutal treatments, how many rounds of chemo, of radiation, of antibodies, surgeries.  This is when we pull out all the stops.  This is when you drag out those dark pictures, the ones without the smiles, the ones you can hardly bear to look at.  These are the silent screams that declare, “DON’T LOOK AWAY.” Many of these faces I know.  Others are friends of friends, scattered across the country.  Of course there are also the pictures of happy, bright faces, eyes that shine.  These are the pictures that hope you realize these are just ordinary kids, they could be your own.  These are the lives that we are fighting for.

The last week and a half has been incredibly busy and at times brutally stressful and hard.  Even now I feel the tension that lately never seems to leave my neck and shoulders, clamped down like a vice, a viper with its fangs gripping the back of my neck.  I know, I know.  I must seem mellow dramatic.  But do you know what it’s like to see your friend’s kid with the leukemia literally pushing its way into their mouth, sweet lips that can’t even close over the intrusion.  This is the same sweet child that only months ago joyfully walked the hallways of the cancer unit with little shoes that squeak with each step.  These two girls fight the same beast, Acute Myeloid Leukemia. Allistaire’s eye is looking off again.  Something doesn’t seem right.  I fear these T-cells haven’t stopped the onslaught.  She rubbed her jaw today, saying it hurt.  She didn’t cry.  Within 15 minutes she hadn’t complained about it again.  But pain in her jaw, so close to her eye where we know there’s cancer…I am surrounded by cancer, drowning in it.

I wrote the above on September 11th, eleven days ago.  I could taste cancer on my tongue, some sort of acrid saliva.  The very cytoplasm of my cells seemed to swell with the dominating presence of cancer.  I wanted to scream and run, with fury, with rage, with terror, with ragged exhaustion, with desperation to flee, to at long last burst through that glass wall that isolates and corals us off from the life for which we so long.

For nearly two weeks Allistaire seemed to be growing literally more and more crazy.  Without exaggeration, I thought she was headed for some sort of psychic break, dragging me along right behind her.  Some sort of terror, fear was building in her, mounting to some peak or perhaps plunging to dark depths.  She would repeat to herself, “I’m afraid, I’m afraid, I’m afraid.”  Afraid of what?  “Afraid of throwing up, afraid of I don’t know.”  Meds, which she must take three times everyday, 24 doses in all, became an epic battle sometimes taking an hour, sometimes resulting in her throwing up and having to do it all over again.  She was completely irrational and nothing I could say seemed to get through her crazed state.  The intensity mounted.  Everything depends on her getting those meds in.  Her tummy pain was increasing.  She ate less and began to lose weight.  A feeding tube loomed. “It either goes in your mouth or up your nose,” I tell her.  I felt like I was failing on the two tasks most directly entrusted to me: getting her to eat and to take her meds. Our days felt frenzied. When my eyes opened to meet the day I would feel dread smothering, knowing it was only a short while before it would be time for her to eat and take meds again.

I was frantic for help. Karen, our PAC (Pediatric Advanced Care) Team person provided a referral for Allistaire to see the child psychologist. For the first time in my life and certainly in Allistaire’s treatment, I realized her little mind might really benefit from meds to help her calm down. I only hoped I could make it through the week until we saw her. We also had a GI (gastrointestinal) consult to try to sort out the tummy pain she’s been experiencing. It’s hard to know how much of the pain is anticipatory and in her mind and how much is real. After her incredibly severe typhlitus infection and the more recent ileus, it would be really great to know what’s going on inside and if there’s anything that can be done to help. But prior to these appointments, she would see cardiology for yet another echocardiogram and EKG.

On Tuesday morning, 9/8, I brought my bright green sticky note to Allistaire’s lab draw. “Digoxin,” was scrawled across in black ink. When Allistaire was inpatient for her ileus, a Digoxin level had been drawn with labs one day and showed that since she wasn’t taking her meds with food, it wasn’t being as well metabolized and so her dose was increased along with several other meds. Once her ileus resolved most meds returned to their pre-ileus dosages. Soon after she was discharged from the hospital, I called to ask the cardiologists about her Digoxin dose and to see if we needed to test her level again as they hadn’t adjusted it. I was told then that it was fine for now and would be retested in 2-3 weeks. I asked the nurse drawing labs Tuesday morning and was told it hadn’t been included on that day’s lab orders but could be added up to 8 hours later. Next I whipped out my green sticky note for the cardiology nurse and she said that Dr. Hong had mentioned wanting to get a level.

So it turns out Allistaire’s Digoxin level was 5. The goal range is .5 to .8 with 1 being fine and anything over 2 being bad news. Digoxin originates from Foxglove and in high doses can be very toxic. Her Digoxin was immediately held in order to get the level down.  It wasn’t until about a week later that I thought to look up side-effects of Digoxin toxicity.  Though these are listed as “less common”, I’m guessing having a level that is 5 to 10 times higher than desired might amp up these effects.  “Agitation or combativeness, anxiety, confusion, depression, diarrhea, expressed fear of impending death, vomiting, loss of appetite, weight loss, low platelet count.”  These are just the ones listed that seem to directly relate to what Allistaire was experiencing.  In addition, her Pozaconazole level, an anti-fungal, was about 4,000 when the goal level is 700.  Some “more common” side effects of pozaconazole are, “abdominal or stomach pain, body aches or pain, confusion, diarrhea, nausea or vomiting.”  Other less common effects include “anxiety, change in mental status, mental depression.”  Again, I have only listed those side effects which I specifically saw Allistaire exhibit.  I only thought to look up side effects later because of the dramatic improvement she made once her Digoxin was stopped to get the level down and the pozaconazole was nearly cut in half.  There was a night and day difference.  The girl who fought me for an hour on meds can now take them in 3 minutes.  She is not afraid anymore.  I did switch to lactose free milk at the same time her pozaconazole dose was decreased, but either way, her stomach pain has reduced to nearly nothing.  She has been doing a much better job eating and has actually gained back  some of the weight she lost.

Her other big cardiac med change was the exciting switch from Enalapril to Entresto. Entresto is a drug newly fast-track approved by the FDA this July for heart failure. In a massive, well-conducted trial, Entresto was compared to Enalapril, the leading heart-failure med, and shown to have significantly greater impact. The heart-failure team first told me about it way back in February or March. I asked Dr. Law about it in August and he said that it had just been approved but it has never been studied in children and he wasn’t sure the hospital would approve him prescribing it, if even it was available. The man, who is typically quite mild-mannered, was visibly excited about it. So Allistaire began her first low doses of Entresto a week and a half ago. Assuming her blood pressure doesn’t bottom out, they can continue to increase her dose until it reaches the optimal level. This is exciting given our utter dependence on her heart improving for any hope of curative cancer treatment.

While the calculation of her ejection fraction on this latest echocardiogram was less (previously 41 and now 37), Dr. Hong said the function of the left ventricle squeeze looks the same and there was actually significant improvement in the dilation of her heart. Her left ventricle went from 4.7 cm to 4.2. A year ago before all of this, it was 3.9cm. A dilated heart indicates a heart working too hard and quite ineffectively. When I think back over the last 9 months, I am overwhelmed at how rough the road has been, but the truth is, it has been vastly better than it could have been. I will never forget the sensation of my legs falling away beneath me as I read that horrifying echo report in March where her ejection fraction was 11. I will never forget the solemn nods of affirmation in our subsequent care conference when I said, “So in summary, none of you think she’s going to make it.” The cardiologist said there was pretty much no way she could recover her heart function. A weak heart cannot begin to endure all that is necessary to beat AML between hard-core chemo, intense infections and simply unbearable pain in transplant that necessitates everything going into the body be given by IV. And yet here we are, here we are. With tears immediate, I smiled a great heaving smile with cheeks pressing up against my eyes when the cardiology nurse, Jen, told me Allistaire’s BNP was 51. FIFTY-ONE!!!!!!!!! This was the very first time Allistaire’s BNP, a measurement of heart distress, had ever been in the normal range of 0-90. On the day of that wretched, heart stopping care conference in March, her BNP dropped from the astronomical height of “greater than 5,000,” for the very first time in weeks. Gosh this has been a crazy-making, exhausting, brutal road but I laugh out loud with joy for the number of times we have been told that Allistaire just won’t make it and then she just keeps going. Maybe she won’t. But she has overcome what has been described as insurmountable obstacles.

How many times have I called out to You for mercy Lord? Mercy. Mercy. And He has, over and over and over. Thank You Father for all the days you have sustained us!

Wednesday the 9th arrived and we got to meet Joanne, the psychologist. I left feeling encouraged that there might really be some tangible ways to help Allistaire learn coping skills and overcome her fears. That day we also met with Taryn, her new hospital school teacher, who schedule allowing, will meet one-on-one with Allistaire for an hour on Wednesday and Friday afternoons. I won’t lie, I find myself zooming past the endless Facebook posts with “first day of school,” pictures. All those smiling faces with cute outfits by the front door with chalkboard signs declaring the next grade, sobs choke my throat and I try to turn away. This is Solveig’s fourth year of school in a row of which I will miss significant chunks. I missed her first day of 2nd and 4th grade. And Allistaire, her first day of preschool last year was nothing like I had hoped or imagined. She cried with no way to be comforted for hours. It was her arm. Her right arm up near her shoulder where a month and a half later we would see evidence of leukemia eroding the bone. Of course she was crying. Her cancer was literally eating away at her flesh. This is not what I thought my daughters’ elementary years would look like. It grieves my heart. I turn away from my visions of what I think “should have been,” and focus on what is our reality. This is the land the Lord has given me.

Wednesday morning also brought a significant turn of events. In my heart, back in the corner, in a place unwilling to stand out in full exposure of light was a secret hope stowed safely away. I wanted to bring Allistaire home. What I really desperately wanted was two weeks at home with all four of us. The problem was that Allistaire had a clinic appointment at SCCA on Tuesday, 9/15 with a lab draw for the T-cell research study. So the night of the 15th would be the earliest we could head home. Bordering the other end of a trip was the necessity to re-stage Allistaire’s disease. Dr. Cooper had recommended doing another bone marrow, brain MRI and PET/CT three to four weeks after the T-cell infusion. Given the changes I had been seeing in Allistaire’s right eye, Sten and I did not feel in good conscience we could delay even a week which would on one hand give us an additional week at home and on the other given that blasted cancer one more unfettered week. This meant we’d have to be back in Seattle by the 21st. But that morning I received a wonderful call back from the research study nurse who said there was no reason that Allistaire couldn’t be seen in Bozeman and have the research lab drawn there and simply Fed-Exed back to Seattle. There was a moment of elation and then it was game on. To get Allistaire out of Seattle required an extraordinary amount of coordination and details especially now that her care was being coordinated between Seattle Cancer Care Alliance, Seattle Children’s Oncology, cardiology and our beloved pediatrician, Dr. Angie Ostrowski, in Bozeman. This meant making sure I had sufficient quantities of all her meds, dressing and line care supplies, and clear orders on how to deal with fevers, infections, fluids, blood pressures, labs, transfusions and clinic visits. Thursday she got tanked up on platelets and on Friday we spent the first half of the day at the hospital while she got red blood before we headed off to the airport. Allistaire was literally beside herself with joy. She could not stop squealing. She would shake her head in awe and stutter to get out the words, “ I can’t, I, I, I can’t believe it! We’re, we’re going home!”

On Friday night, September 11th, fourteen years after the Twin Towers fell and changed America forever and five months after my sweet brother-in-law, Jens, died and changed our family forever, Allistaire and I boarded a plane bound for Bozeman.  She skipped.  She hopped.  She laughed.  She squealed.  Her eyes were bright bright bright.  She was excited about everything!!!  At long last the time came when we walked through the security doors in Bozeman and into the arms of Sten and Solveig.  I cried with joy, with sorrow weakening my legs.

We didn’t do really much of anything exciting.  We just spent the next eleven days together.  Chocolate chip pancakes at the kitchen counter and the girls running around the house, laughing and coming up with strange horsey games.  Emptying the dishwasher and waking to the sight of tall evergreens and swaying grasses outside of my bedroom window, knowing Sten lay next to me in the night, wind chimes in the breeze and a shocking array of stars and thick gauze of Milky Way, morning stars and elk bugling, watching a massive rain storm heading east over the valley, engulfing hills in gray mist, waiting for the tell-tale stirring of leaves and fir needles as the wind approaches, light slipping away and at long last feeling cool rain drops on my face.  Extravagant.  Luxurious.  The girls playing on the driveway in the bright sun of a windy fall day, attempting to fly the dragon kite and eventually asking to walk up to Grandma and Grandpa’s.  I tugged at weeds and pruned raggedy bushes, defied the bur weeds and stood with all my body weight on the shovel to remove ugly shrubs.  My arms thrilled at the fatigue of pushing the wheelbarrow up the hill over and over again to the burn pile.  Hawks circled and screamed in the wondrous blue above.  Chipmunks with elegant little black stripes flitted about the yard.  Aspen leaves shuddered in the wind, flashing green and yellow.  Familiar faces, missed, loved, at Solveig’s school fun run where she proudly protected her little sister.  Solveig.  Oh Solveig, giggly girl with gorgeous gray-blue eyes, flecks of green and brown, ever rosy cheeks.  Tucking her in for bed each night with a blow-kiss to end the day.  In town, sweet friends at the school, at the soccer field, everywhere faces that love us, miss us, pray and cheer us on.  Cheering on Pam as she ran her first marathon to help fund childhood cancer research.  Running a short stretch with her toward the end – marveling at how the crossing of brutal paths has brought about this flourishing treasure of friendship – proud watching my friend persevere, propelled to push through the pain because of those 26 kids’ names neatly written out on the card pinned to her shirt.  Allistaire laughed and laughed as she stood in the lake at Hyalite, ripples shimmering out around her in endless rings.  “Is this better than Ron Don?” I asked.  Smiles too big for her face as the fire light wavered orange, reflecting in her eyes and instruction on how best to roast a marshmallow.  “Is this better than Ron Don?” I asked again.  “Everything’s better than Seattle,” she declared with satisfaction.

Everyday I flushed her lines, took her blood pressure and temperature and gave her meds, encouraged her eating.  But cancer, other than that wonky eye, sat in the back drop, it’s yell not so dominating over the hush of grass in the wind, of blue expanse of sky, of sleek brown horses flicking their tails, of rain storms and deer in the evening, of creeks tumbling over rocks and two sisters laughing, laughing, Sten and I smiling.  I see that eye, that right eyeball that bulges just a bit, too much white showing under the pupil.  I see it.  It demands my attention, fairly screaming its urgency.  But I tell it, “shush.”  Be still.  Be still.  What will be will be.  We’ve faced terrifying prospects many times before and yet she runs and laughs and bursts her bright being into the world.  She may yet be given open doors, she may yet thrive.  And if not…if not?  Well, love her all the more Jai.  Love her fiercely.  Let go the insignificant things.  Cherish.  Savor.  Focus in.  See the beauty and life bursting right before me.  Listen to the sweet lilt in her voice, watch her mind try to sort out how things work in the world, delight in her childish perspective.  Sit and watch.  Observe.  Take it in.  Swell with the incalculable delight of now.  We are guaranteed so little in this life.  We have insatiable desires, ever grasping for more, for better.  But pause.  Pause.  What here?  What bounty have I swept past, swept aside in pursuit for something more.  I am deprived because I refuse to slow, to stop, to dwell in this present space.  Somehow, imperceptible millimeter by millimeter the Lord is etching His ways into my heart.  My spirit turning to His.

It’s early evening, Tuesday the 22nd of September.  Fall is here.  Warm light skims the ivory blanket, reflecting back against the far wall of our Ron Don room.  Outside the city buses drive by, waning light seems to illuminate from within thousands and millions of green leaves, draped in layers and layers of organic veils like pieces of stained glass.  We arrived back in Seattle late last night and got to the hospital by 7:30 this morning.  It was supposed to be 45 minutes worth of procedures – a bone marrow aspirate and biopsy, intrathecal chemo, an endoscopy and a flexible sigmoidoscopy.  We finally left about 5:30pm.  After two hours of waiting in the pre-op area, labs drawn earlier revealed the need for yet another platelet transfusion, the previous only two days ago.  So upstairs we went to the Hem/Onc clinic to wait for STAT platelets and the hour to get them in.  Then back downstair to wait for the anesthesiologist finish his case because he had graciously insisted we were going to get this all done today.  All went well and he determined that Allistaire’s heart is now “robust” enough to no longer require cardiac anesthesia.  The GI doc was also pleased because all looked well with the exception of one overt and easily treatable problem.  Apparently Allistaire has a whole lot of hardened stool backed up in her colon that he said can actually cause pain on par with a burst appendix.  The fix is a big time dose of laxatives over the next several days to clear her out.  All was well in recovery initially but then for several additional hours she struggled with extreme nausea and threw up dark reddish brown flecks of blood from the multiple biopsies that were taken.  She sleeps now, Doggie tucked up under her head.

On Thursday Allistaire will have a brain MRI, a PET/CT and a CT with IV and oral contrast.  This will both provide additional information about her gut and, along with results from the bone marrow test, help give a clearer picture of where things stand with her leukemia.  A little over a month ago, pneumonia was discovered in her lungs from her previous CT.  Dr. Ostrowski heard weezing in her lungs last week, though the anesthesiologist did not today.  She’s been on antibiotics forever and was switched to an even broader spectrum anti-fungal once the pneumonia was discovered.  Her ANC has been relatively decent so everything is being done as far as I can tell, to combat the pneumonia.  The state of her lungs could impact her options going forward if more chemo is needed if the T-cells are not able to keep her cancer at bay.  Interestingly, her persistence research labs from Day+14 from the T-cell infusion show that the percent of the genetically modified WT1 T-cells has actually increased from the Day+4 persistence labs up to about 10% from 6%.  What this means as far as how effectively the T-cells might be working is unclear.  It does, however, direct the course going over.  Only once the percentage drops below 3% is the second and final infusion of T-cells given.  This means at this point there is no plan in place for the second infusion and Allistaire has been officially been dismissed from the care of Seattle Cancer Care Alliance back to Seattle Children’s.  She has tolerated the T-cells incredibly well with no known side-effects which is a great gift when dealing with experimental treatment.

As is ever the case, the days ahead are utterly unknown.  The nurse today asked Allistaire what she’s going to be for Halloween.  Halloween?  Are you kidding?  That’s a million years away.  Our life is lived in less than hour increments.  Last year we planned for the girls to trick-or-treat along Main Street at home in Bozeman with a party to head to afterward.  A week before Halloween Allistaire’s relapse was discovered and 24 hours later we were headed to Seattle.  I saw my friend Megan on the soccer field on Sunday.  Her husband told me what field to look for her at but as I scanned the folk before me I realized I had no idea how long her hair was.  We met at Cancer Support Community with her bald head and blue eyes as she battled lymphoma.  She told me of being shaken by the news of her friend’s son being diagnosed with a brain tumor just days after he and her daughter had played together.  He is one of two new cancer diagnoses of children in our town in the past few weeks.  “I don’t take having my kids for granted,” she said.

“I feel like flesh rubbed raw,” I told my mother-in-law.  Every touch, no matter how light, brings stinging pain.  My reserve is wiped away.  I have no buffer.  The pain just penetrates immediately.  Sometimes I gasp, fighting to get air, wondering how to keep going, disoriented by circumstances ever outside of my control that change constantly without warning.  I read some simple yet profound words by Paul Tripp that met me right where I was, where I am.  A friend shared a song.  A song I’d like to wake to, to end my days with.  The Lord provides.  He hems me in behind and before. He goes behind me and breathes life into death, redeeming the brokenness, the loss, the ugliness, the sin and death.  He guards my right foot from slipping.  He is invites me to dwell in the shadow of His wings.  He goes before me, sovereignly orchestrating the days ahead.  He lays down provision, provision that I cannot yet imagine nor even know I will need.  He gives me manna, sustenance each day.  He destroys.  He annihilates.  He ravages.  He calls me to harken to His voice that says what this life is about, what it’s not about.  Damn the closet doors.  They don’t matter.  Forget that stretch mark strained bulge of fat on your belly.  Let go.  At long last release that white knuckled grip on what you “think” this life ought to be.  Rest.  Rest.  Dwell now, here, in this fleeting moment, in the ragged land punctured through with un-doing beauty, with sights too glorious and too painful for words.

But sometimes I just flat out tell Him, “NO!!!!”  I don’t want what you have for me God!!!  I want this to be done.  I don’t want this pain.  I don’t want this chaos.  We’re in the ER now (Wednesday morning).  Allistaire continued to throw up and I had to call the Hem/Onc Fellow on-call last night.  She took some of her meds but then threw up.  She essentially hadn’t had almost anything to drink since the night before.  I was worried about her getting dehydrated.  She moaned in pain all night long but didn’t actually throw up until 5:45am.  This time it was that dark green bile I had only ever seen during her ileus in July.  Dread swept in.  But right before she threw up she pooped which meant her gut had moved.  A few hours later she threw up the green bile again.  Immediately afterward I made her take all of her meds which she was able to keep in for over an hour which meant that hopefully they were absorbed.  I called the GI clinic who instructed us to go to the ER to get her assessed.  She has continued to throw up but is on fluids now and the CT w/contrast that was scheduled tomorrow will happen today as soon as we can get the oral contrast in.  The thought of another ileus and the adjoining hospital stay is daunting.

I tell God, No, this is too far, too much.  This has to stop.  But who am I?  What is the purpose of my life, of Allistaire’s?  Is it not ultimately to know God and make Him known?  Isn’t it really about yielding to His will because the source of His will is His love for us, His goodwill to all men, His desire that all might come to see Him as He is – the only source of true life?  Am I really going to say No to that?  Because that is not love.  Love yields and sacrifices for the good of another.  That is what God is calling me to – Jai, will you lay down your life for another?  Will you lay down your expectations and declarations of what you think you deserve and trust Me to walk you through this life in a way that allows My beauty and truth to be seen?  I used to think I wanted to be a missionary.  I had visions of jungles and Africa.  But isn’t being a missionary really just saying Yes to God that where you are is where He wants you?  Who am I to define the boundaries of the mission field?  What if there’s one conversation with one nurse or one fellow parent that this is all for?  What if there is one day that all these days will have brought me to that is the day the Lord moves in the heart of another through our brutal road?  Will I love?  Because loving others means yielding to the Lord right now, here.  Man it is so very hard to do because everything in me rages that this is all fucked up!  And it is!  It is!  Christ came into the world precisely because it is a mess and fundamentally broken.  God could have fixed everything that very moment it broke, but He didn’t.  Christ could have brought everything into redemption when He walked on earth but He didn’t.  God has been at work from before the beginning.  He is an epic God.  His scale is far vaster and more complex than I can begin to imagine.

One night at home this past week, Sten and I sat on the deck in the dark, looking up at the staggering beauty of the star filled sky.  I asked him about one particular cluster of stars.  He pulled out his iPhone with the snazzy app that’s supposed to allow you to point your phone in the direction of the stars of inquiry and it will show you their names and the surrounding constellations.  As he fiddled with the settings we discovered the app also allows you to see not just the visible light spectrum part of the sky, but also you can see it based on the gamma rays and x-rays present.  Each selection on the app allows you to “see” a different portion of the electromagnetic spectrum the our eyes cannot detect.  Eleven years ago I taught Physical Science to 9th graders.  I found myself swooning whenever we discussed the electromagnetic spectrum – so much reality always right there but utterly invisible to me.  My eyes, my body, my senses had no way to detect infrared light or radio waves and yet, they really were there – if only I had a way to “see” them.  I believe the way the Lord knows and sees the universe and time is a bit like the electromagnetic spectrum.  He can see ALL that is there, that is real, at once, in full clarity and detail.  I, well, I can only see the smallest segment of the vast reality that is.

Paul Tripp’s words that helped me last week

“It is Well” song that encouraged me

 

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T-Cells Tomorrow/Tuesday!!!!

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IMG_2954The last several days have been a whirlwind so this will be brief…

Tomorrow is the big day which really, won’t look like much at all on the surface.  Like countless days before, Allistaire will have labs, see the doctor and have an infusion.

The day begins at 8am at Seattle Cancer Care Alliance with a lab draw followed by being seen by Dr. Ann Wolfrey, the BMT (Bone Marrow Transplant) doctor who is assigned to this trial.  Per trial protocol, she will examine Allistaire and make sure she is fit to proceed with the T-cell infusion.  We will then head over to Seattle Children’s Hospital Hem/Onc (Hematology/Oncology) Infusion Clinic.  Around noon, the research nurse for the trial will arrive with the cells and the two-hour infusion will begin.  Allistaire will be closely monitored in clinic until 5pm at which time she’ll transfer just down the hall to the Clinical Research Center where she and I will spend the night.  Dr. Wolfrey will also be spending the night in order to respond to any issues that could come up and to examine Allistaire in the morning.  Assuming all is well, she’ll be done around 8 in the morning.

Severe reactions to the T-cell infusions have not been seen on this trial as is the case with the CAR (Chimeric Antigen Receptor) T-cells used to combat the more common type of childhood cancer, ALL.  This is both good and bad.  Because of the poor condition of Allistaire’s heart, she would not qualify for the CAR T-cell trial were she to have ALL.  However, the extreme immune response may also be indicative of the effectiveness and amazing success seen over the past two years with this new ALL treatment.  As I have said, Allistaire will actually be the first child to receive these genetically modified T-cells that target the WT1 protein on leukemia cells.  One thing that makes her different from other participants on this trial, besides being a child, is that she is on absolutely no immune suppressants. Most folks on the trial have much more recently had a bone marrow transplant and are likely to have at least some GVHD (Graft Versus Host Disease) which necessitates the use of some immune suppressants.  While Allistaire had mild acute GVHD after her bone marrow transplant, she has been off of steroids for well over a year so these T-cells will have nothing to suppress or hinder them.  Drops in blood pressure and fever are possible signs of an immune response.  Actually determing the effectiveness of these cells for Allistaire would take much longer and really can only be determined with the scans and bone marrow tests she always has to monitor her cancer, none of which have yet been scheduled for the future.

I am so thankful for this open door.  It would have been a very hard pill to swallow if Allistaire had never had the opportunity to have this genetically modified T-cell infusion, knowing these cells were crafted just for her.  At the same time, it has been a very long time since her last chemo and this process of gaining the IRB approval has added weeks to the time that her cancer has had the opportunity to grow.  Honestly, the doctors are not super optimistic about the effectiveness of these T-cells against chloromas which are Allistaire’s biggest challenge.  Boy would I just love it if these T-cells were her cure and we could at long last be done with this whole crazy thing.  On the other hand, if they could just buy her a chunk of time in which her heart could continue to repair and get stronger so that she could go onto have a second bone marrow transplant, well, that would be awesome.  I can’t think too much about it though honestly.  Even a good road ahead would necessitate many more months.  I’m flat worn out.

Another mom we met months and months ago stopped me in the parking garage at the hospital today.  Her little guy has neuroblastoma and despite doing all sorts of crazy intense treatment, he’s not in remission.  She asked me how I do this.  I didn’t tell her I rely on God.  I told her sometimes I think I’m going to lose my mind.  Sometimes I feel like I’m being crushed in a vice.  But what choice do we have?  I asked if she’ll be in clinic tomorrow and she said yes.  I want her to know I feel the searing pain, the deep, deep ache.  Jesus comes to us in our sorrow, in our broken heap of ourselves, our messy, screwed up lives.  He mourns with us.  I mourn with her.  I mourn with another mom who lost her sweet girl earlier this spring.  She amazingly, courageously, compassionately texts me regularly to convey her sweet heart toward us, cheering us on.  I so want Allistiare to live.  But sometimes I wonder, am I to cross over that line that I might sit and mourn with those who have lost their child?  Am I to know that loss that I might have a voice in that dark, brutal land?  With weeping heart and trembling hand, quavering voice, may I sing of a God who meets us in the dark, pointing to His beauty, resting in His wild audacious promises of redemption, or resurrection, of love that defies our small ideas of good.

I flew back to Seattle from Bozeman early this morning.  I went home for just over 48 hours so I could be there for Solveig’s birthday party, to witness the mysterious tribe of 4th graders unfurling, running laps around the house and through the yard, squirt guns and chocolate cake and massive balloons and Solveig giggling over the fact that Jake wrote, “Love Jake,” on her birthday card.  As our plane headed west the clouds slowly increased.  We flew at 25,000 feet.  I thought I could make out the great curving rend of land to the east of Whitehall and then the scarred earth of the mine nearby.  Little flits of clouds became strangely speedy fleeces blocking the land.  Here and there whole canyons and low places where entirely engulfed in white.  Having grown up in Washington, countless days passed with that blanket of gray, drab, draped over the curvature of our wee bit of sky.  A smile flooded by fatigued face as I remembered the first time I flew up out of the clouds of Seattle as a teenager into a brilliant azure sky.  It was disorienting in a laughable, delightful sort of way.  But, but…I thought the world was gray and drab and depressing?!  And all this time, just beyond the scope of my eyes there existed a beautiful reality far more vast in its expanse than my view of horizon to horizon?  So my view is not all there is?

The clouds, they come and go.  The blue of sky is always there, always, even when I cannot see it at all, even when it seems the whole world is made of drab grey.  Father above, thank you for your constancy, your vastness, your reality that transcends my transient life and circumstances.  Tomorrow is the day you have made, and I will be glad in it!

By the way, tomorrow Allistaire will wear a very special shirt.  It is the same shirt, just two sizes bigger, than the one she wore on a very special day just over two years ago.  On June 18, 2013, Allistaire was given another infusion, one that like that of tomorrow, looked deceptively simple and uneventful.  On that day, Allistaire was given the stem cells of a woman from the other side of the planet, in order to “rescue” her, in order to give her a chance at new life after the old marrow had been wiped away.  Tomorrow, that woman’s compassionate, generous heart has made a way, yet again, for Allistaire to have another chance at life.  It is her T-cells that have been genetically modified and will be sent rushing through Allistaire’s tubies into her flesh.  Thank you to this unnamed woman, thank you.  We long to meet you in person one day.  We are so indebted to you.  If YOU would like the opportunity to save someone’s life, you can sign up at Be The Match.Org to be on the bone marrow registry.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.  2 Corinthians 4:16-18

APPROVED!!!!!

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rocking chairFour years ago we could never have imagined this little girl connected to genetically modified T-cells but I just got word that the IRB did approve her to move forward with the WT1 trial and get her T-cells!!!! I have no more info at this point but know that they are trying to plan it for next week though this Friday is also a slim possibility.  Her ANC today was 832.  Platelets are still low requiring a transfusion last Saturday.  Thank you for all of your encouragement and prayers!

Thank you God for another open door, a massive thick, seemingly immovable door!

Denial

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IMG_0836My eyes blink and blink, looking around, trying to clear my vision.  Chest compressed and struggling for breath, the wind knocked out, a severe blow.  No words form on my tongue, just desperate to get air.  When I walked up to the door I expected it to open and be welcomed in, feeling a bit giddy.  The next moment the fist connects with my jaw, so hard and fast I hardly feel pain.  I find myself crumbled on the floor, all the strength drained from my legs, hands shaky.  It’s taking a while to even want to get up, to even test my ability to rise.

Everything was set, down to the small details, two beds in the room or a crib and a bed?  We were to go to SCCA (Seattle Cancer Care Alliance) Thursday morning at 8am.  Dr. Wolfrey, one of the BMT (Bone Marrow Transplant) docs would examine Allistaire and labs would be drawn as outlined by the trial protocol.  We would then return to Seattle Children’s for Allistaire’s scheduled dose of IV anti fungal.  Around noon, the research study nurse would arrive with Allistaire’s genetically modified T-cells that took six weeks to create.  By 1pm the two-hour infusion would begin and she would be monitored very closely.  Once the infusion was complete, we would transfer across the hall to the CRC (Clinical Research Center) where we would stay overnight until 8am when Dr. Wolfrey would again examine her and determine if she could be discharged.

Many times Wednesday morning, as we spent a few hours in clinic getting her anti fungal infusion, various staff popped by to share the excitement for the T-cells scheduled the next day.  Congratulations all around.  Nurses near and dear to us, each saying they wish they could be our nurse on Thursday to give the infusion.  I saw Dr. Cooper in the hall, knowing he probably didn’t want me harassing him to find out if he’d heard the decision from the IRB (Internal Review Board), but I couldn’t help myself.  N0 he hadn’t heard, but they won’t say No he said.  Mid-morning the research study nurse called to say that the IRB would meet that afternoon and she would call me probably after hours with their decision.  So nerve-wracking.  I’ve come to trust nothing until it actually happens, so very many times we have been disappointed and forced to cancel plans.  But still, it all sounded like a simple formality.

Everything was moving forward.  I comforted myself with the reminders that Allistaire’s situation was vastly improved since Dr. Egan first proposed going to the IRB to ask for exceptions.  Her ileus had fully resolved and as of Monday, she was completely off TPN (IV nutrition).  Her echocardiogram on Friday produced an ejection fraction of 41, one point over the needed threshold.  That meant the two big “Grade 3 Toxicities,” were gone, irrelevant.  Really the only remaining issue is her lack of count recovery.  The protocol dictates that if there is no leukemia present (specifically in the marrow) then the patient must have an ANC of 1,000 and platelet count of 50.  If there is leukemia present, then the thresholds are an ANC of 500 and platelet count of 30. A marrow that has leukemia present is less able to produce the healthy blood cells.  In Allistaire’s case, both the Flow Cytometry and FISH tests showed no evidence of leukemia in her marrow.  She still has leukemia as evidenced by her remaining chloromas but nothing shows up in her marrow.  Allistaire’s cancer cells show characteristics of both M5 and M7 AML.  M5 is known to be associated with chloromas and M7 is “associated with marrow fibrosis due to megakaryoblast secretion of fibrogenic cytokines.”  What this means is that the landscape of Allistaire’s marrow has been permanently changed due to secretions by cancer cells that have created a web like structure in her marrow which in turn makes it harder for the blood cells of her marrow to recover.  Not only has her marrow been long battered by the effects of so much chemo (21 rounds of chemo each containing 2-4 different types of chemo), but her cancer cells themselves leave behind their wretched imprint.  So…the point is, Allistaire’s marrow is very slow to recover and the time that it takes to reach these count thresholds required by the trial also means a whole lot of time for her cancer cells in the rest of her body to continue to divide and increase.

We are in a hard place.  Giving Allistaire’s marrow time to recover counts so she can qualify for the trial allows the rest of her disease lots of opportunity to increase which makes this T-cell therapy far less effective.  Any future chemo that is intense enough to keep her cancer at bay will also suppress her counts.  Less intense chemo won’t suppress her counts as much but more than likely will not stop her cancer.  We are in this wretched cycle that seems to repeat endlessly and to have no way out.

As the day turned toward evening, the waiting intensified like a very taut thread.  I called out to God, reminding Him that I am made of but dust, I am a vapor, a mist, a spider web, a flower in the field soon to fade.  I called out for mercy, mercy Lord.

A little after 6pm, Dr. Egan called.  “I am so sorry Jai.”  I tried to listen.  I tried to hear what he was saying.  Like garbled words I could not make sense of what I was being told.  The IRB denied the request for exemptions.  “What did you ask for?” I pleaded.  The IRB just gave an answer of, “No,” for now and will provide a letter of explanation on Monday.  Did Dr. Egan ask for too much?  Were his requests too broad?  It seemed from what I heard that he asked for exceptions that would apply to all patients going forward.  Who are these folks who make up the IRB?  I want them to see Allistaire’s face.  I want them to see her dance, hear her laugh.  Yes, yes I know that all these numbers about her matter, they too are truth, real, but they are not the whole story, the full picture.  Look at MY CHILD!!!  But you see, this is the hard part about cancer research.  This is research, this is not a standard therapy.  This is an experiment in its truest form.  The first commitment of a doctor is to “do no harm.”  Harm?  Wow does this feel subjective!  I mean I’m pretty sure death is harm.  Chemo is harm.  Surgery is harm.  Radiation is harm.  Harm.  Harm.  Everywhere harm.  But wouldn’t I cry out for it again and again if I thought harm might make a way through for life?

But you know, I do understand.  I do respect this mandate to do no harm.  I respect that it causes a doctor, a researcher to pause, to carefully consider. The hard thing is we’re working in the world of unknowns – we don’t know if these T-cells will work, we don’t know what harm they may also cause. It is ever so important that this trial be carefully designed and carried out.  The whole point of a Phase I trial is to determine if it is safe – if there aren’t toxicities that result from this therapy that negate its potential value.  Once it is determined to be safe with relatively low risk, the next phase of research looks at efficacy.  There was actually a T-cell trial that used a different type of virus to alter the DNA within the T-cell that ended up causing ALL (Acute Lymphoblastic Leukemia).  That trial was shut down because folks trying to have their cancer cured actually got cancer directly from the experimental therapy.  It is not reasonable to ask or expect the IRB to sweep aside all concern because we are desperate for Allistaire.  While I hope they will consider her as an individual I also understand that the point of this trial is for the benefit of anyone with relapsed AML, child or adult.  I do not want to stand in the way of carefully conducted science.  If you read the fabulous book, The Emperor of All Maladies, you will learn how the “radical masectomy,” became the standard treatment for breast cancer between about 1895 and the mid 1970’s, ravaging and brutalizing women’s bodies it turns out without benefit.  It took a serious clinical trial to show that theories about how cancer metastasized that had been taken for granted as truth, were in fact false, only after thousands of women endured horrific, disfiguring surgeries.

I should also mention, Dr. Cooper was fairly awed that Fred Hutch is even willing to open this trial to children.  It is precisely because Allistaire is a child, the very first child in fact, to ever attempt this therapy that the IRB wants to tread with such great caution.  “Because no one wants to see a kid die?” I ask Dr. Cooper.  Basically that’s it.  Everyone has a much harder time seeing a kid hurt, even die, harder than seeing a 75-year-old person with AML and has had the chance to live.  The thing is, if kids die, a trial is more likely to be shut down.  This is a problem – for everyone.  Far fewer kids get cancer than adults so it is not financially lucrative for a pharmaceutical company to trial a drug that might work against a childhood cancer until it’s been proven to work in an adult cancer.  Adult cancers are what bring in the money.  Kids are a financial liability.  The irony is that the bodies of children have a far better shot at enduring the toxicities of a drug that would kill an adult.  Here is a statistic worth pondering: “The average age of a cancer diagnosis for an adult is 67 years old, equating to an average of 15 years of life lost to cancer in contrast to the average age of a cancer diagnosis for a child which is 6 years old, equating to an average 71 years of life lost to cancer.”  The National Cancer Institute only allots 4% of its budget to pediatric cancer research and it is not a money-maker for pharmaceutical companies.  Who’s going to pave a way forward for kids with cancer?  I am so thankful to Fred Hutch for being working so hard to open this door for kids with AML.  I am also thankful for organizations like The Ben Towne Foundation, St. Baldrick’s and Cure Search that raise funds specifically to accelerate cures for childhood cancers.

This denial has been a severe blow to my heart.  Having everything set up with the expectation that we would move forward with the T-cell infusion, only to be told No at the last moment has been extremely emotionally shocking.  I have felt quiet these last few days, not really interested in hearing what people have to say or saying much myself.  While it would be nice to believe, as some do, that because God has brought Allistaire so far, He will continue to open the door for her, I don’t hold to that idea.  I fully believe He is able, gosh I really believe that guy, God, if He really is God, it’s simply not hard for Him to make a way forward for Allistaire.  I mean, I’m pretty sure if he designed atoms and stars and the DNA double-helix and orangutans and sunsets glinting off snowy peaks and oceans deep teeming with wild sea life – I know He is able.  He is able!!!  The thing is I equally believe with my whole heart, with every fiber of my being that He is other, He is infinite and my finite mind cannot begin to fathom what He is up to, because one thing I know, is that this whole crazy seeming mess is about more than Allistaire and her one little precious life.  This is about more than me loving my daughter desperately and wanting to know her all the rest of my life.  I’m telling you, it had better be about more, because there are times when death seems like grace, an end to this struggle.

What’s rocked me is seeing how God resolved her ileus just in time and increased her heart function to just enough to qualify for the trial.  It seemed He was opening doors.  And they are open doors still.  But then wow, the door slammed right in our face, a very hard blow.  A friend told me she wants to study God’s promises.  This is a crucial question – what does God actually promise?  What are the strongholds which God declares I can grab onto?  It is imperative that I reach for what will really hold.  I texted my Seattle pastor this morning saying I need help.  I feel I am in a storm which threatens to tear me limb from limb.  Later I saw that back home in Bozeman, my pastor Bryan will be teaching on the book of Job.  He says, “The book of Job is a storm. At the beginning of the story, storms strike Job’s house. At the end of the story, God himself speaks out of the storm. In between, chaos and darkness reign.”  Who am I to liken myself to the righteous man Job?  What I want, truly, more than anything is that God would delight to use my life to illuminate His life-giving beauty.  But oh man, do you know what happened to His Son?  God the Father allowed His son to be crucified for the salvation of the world, that all might receive eternal life through Christ.  And Jesus yielded to the Father, “for the joy set before Him.”  I am far, far too frail and finite to endure.  I am in desperate need of my Father to hold me up.  Hold me up Lord.

From my youth, my brain has been a brain that never ceases roving, roving, searching.  In 10th grade when I took computer science, I would go to sleep contemplating algorithms, sometimes waking with the solution.  It’s not always handy.  Often I wish I could shut it off.  My mind has circled high and low, over and over this predicament, inquiring of every angle, searching for a crack, a path through, like water through rock.  Thankfully Allistaire has one seriously awesome doctor and one that treats me with respect, who allows and invites me to be a part of this problem solving endeavor.  Both Thursday morning and this morning, Dr. Cooper and I were able to discuss the situation, what is known and unknown, what sort of “strategerie,” might be best.  As of this morning Dr. Cooper was able to hear from Dr. Egan who had in turn been able to talk to one of the members of the IRB.  This person recommended Dr. Egan resubmit his request.  It seems that the IRB’s perception of the requests were for quite wide sweeping exceptions that would pretty substantially change the protocol and might even require FDA approval.  I know that he asked for exceptions regarding Grade 3 Toxicities in general.  At this point, to our best knowledge, Allistaire does not have any issues that count as Grade 3 Toxicities which would negate the need to even bring up anything related to Grade 3 Toxicities.  Really she just has low blood counts.  Tomorrow she will get another set of labs and I am so hoping her ANC and platelets might be on the rise.  Dr. Egan will resubmit today or Monday, though the IRB will not meet again until next Wednesday.  This may be our last shot for Allistaire to get her T-cells.

I will not shake my fist at God.  I don’t understand. His plans baffle me.  Though I do not see, I will bank all my heart on Him.  I will thank Him for all His bounty.  I will put my hope in His redeeming ways, in the mystery of the ugly-beautiful.  I lay flat at His feet and ask simply, Father, do not abandon me.  Be faithful to your promises.  May your mercies be new every morning.

 

“The wrinkled man in the wheelchair with the legs wrapped, the girl with her face punctured deep with the teeth marks of a dog, the mess of the world, and I see – this, all this, is what the French call d’un beau affreux, what the Germans call hubsch-hasslich – the ugly-beautiful. That which is perceived as ugly transfigures into beautiful. What the postimpressionist painter Paul Gauguin expressed as ‘Le laid peut etre beau’ – The ugly can be beautiful. The dark can give birth to life; suffering can deliver grace.”  Ann Voskamp, One Thousand Gifts: A Dare to Live Fully Right Where You AreIMG_0762 IMG_0772 IMG_0779 IMG_0781 IMG_0786 IMG_0791 IMG_0794 IMG_0795 IMG_0799 IMG_0802 IMG_0806 IMG_0811 IMG_0814 IMG_0815 IMG_0816 IMG_0817 IMG_0819

Long Shot

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0809151929I slow the car heading down the hill on 65th, allowing a mom and her two children to cross the road.  Blonde curls bounced and flounced as the little girl, about two, followed her mom casting glances back at me.  Without intention my brain delivered up the thought, “maybe that’s what Allistaire would have looked like, alive, out thriving in the world, hair growing toward shoulders.” Immediately I slam the gate close and fix my attention on getting back to the hospital in time for the end of Allistaire’s nap.

It felt as if Monday was a day of dividing, a narrowing once again of the path, splitting the road down into two opposing directions.  The morning began with the news that the cardiac anesthesiologist may have to use Milrinone during the sedation which would mean recovery in the ICU and a hoped for wean back off Milrinone.  Both words “ICU” and “Milrinone” evoke heavy, deep terror.  Ugh.  Okay.  Okay.  Acclimate.  Accept.  New norm.  The bigger issue though was what the results of the Brain MRI, PET/CT and bone marrow test would reveal.  Again there was the impending sense of coming down to the end of things.  Yet in the midst of this, strange rest to accept what would come.

For three long hours Sten and I sat out on the patio outside of Starbucks, waiting for the pager to alert us that the time had come to take the next step forward on this journey.  The cardiac anesthesiologist was pleased with how the sedation had gone and had indeed used a combination of Dopamine and Milrinone to keep Allistaire’s blood pressure from spiraling down.  She was recovering in the ICU with the plan to cut the Milrinone dose by half in 6 hours and off completely in another 6.  Allistaire herself was still coming out of the effects of anesthesia and was in the angry phase, yelling bitterly “It’s not fair.  I hate it here.  I want to be in my regular room.”  She beat her fists on the bed and slammed Doggie down over and over.  Such strange words to hear from her, evidence that Allistaire is growing up, no longer a naive little child but starting to sense a yearning for justice and rightness in the world.  It hurt my heart.

As soon as it was clear Allistaire was fine, my attention was powerfully pulled to the fact that it had been hours since the end of the PET/CT and surely by now someone somewhere must know something of what was happening inside Allistaire’s flesh.  I asked the ICU nurse to page Dr. Leger, the attending oncologist, asking for results.  She’d be right down.  My heart began to pound, standing on that ledge overwhelmed by the vast sense of deep space in which I may be about to fall.  The news was good.  The news was bad.  “Her cancer looks better,” she said.  Relief but not nearly enough.  The PET measures the metabolic activity of the areas of cancer with a unit of measurement called SUV (Standard Uptake Values).  The body is deprived of sugar for about 12 hours before the scan and then an injection of glucose is allowed to circulate the body for an hour before the scan is taken.  The more metabolically active, the brighter the area of the body on the scan.  Results less than 3 and even more so less than 2 are considered to most likely be non-cancerous.  All of the chloromas (leukemic tumors) in Allistaire’s body had reduced to less than a value of 2 with the exception of one spot which was 2.3.  The mass in Allistaire’s sinus had reduced to about 6 which is till quite “avid” as they say.  So while it is great that Allistaire had a good response to the chemo/antibody, would it be enough to move forward?  What would forward mean?

The bad news was that there was also a patch of pneumonia on her lower right lobe of her lung.  An active infection.  While Allistaire has had absolutely no respiratory symptoms nor fevers, we all assumed an active infection was yet another slammed door to proceeding with the T-cells.  In the past week it had come to light that Allistaire’s cardiac function was also too poor to qualify for the WT1 trial.  Apparently deep in the details of the protocol was the requirement of an ejection fraction over 40, a currently impossible bar and one that could take months and months to achieve if ever it could.  The problems just kept piling up, seeming to bar the way forward with the T-cells:  poor cardiac function, active infection, Grade 3 toxicity due to ileus in addition to a lack of count (Neutrophil and platelet) recovery we had always known would be an issue.  With the door to T-cells closed the only option would be more chemo but there’s no way to give her more chemo right now with an active infection brewing.  Giving more chemo would just suppress her white blood cells all over again and allow the pneumonia to take over.  She would need time for her body’s recovering immune system to fight the infection which also meant time for the cancer to grow back and spread. Everywhere my mind turned felt like slammed doors.  Sten and I pressed our bodies together in long silent hugs, my legs weak underneath me, threatening to give way.

I went to sleep crying.  I woke twice to dreams of being chased, hunted down.  I woke for long hours in the early morning, hot tears and the slow realization that we might just really be done.  We might need to take her home soon.  Oh sure, it wouldn’t be right away.  They wouldn’t kick us out while she has an ileus and an infection.  They won’t just let her starve to death or intentionally let an infection overtake her.  No, I knew they would continue to treat these issues.  Home would only be an option once these were past.  And for the first time, “quality of life,” was a term I was willing to hold in the forefront of my mind.  Maybe “going down in flames,” wasn’t the only option.  Maybe it would be better to let it happen slowly.

“Oh Lord, oh God, have mercy!  Look down on these woes and make a way through, please Father.”  I called out to the Lord intent on yielding to His Godhood – His ways being beyond my comprehension, but still calling out for mercy.  The Israelites came to mind, pinned between the onslaught of the Egyptians and that vast body of the Red Sea.  There was nowhere to turn, no seeming avenue of escape.  And then the Lord did the incomprehensible.  He parted the waters of the sea and they walked through on dry land.  “Father, part the waters, make a way through,” I cried out.

JoMarie, Solveig and Jo drove away Tuesday morning.  When it became clear that nothing big would be discussed that day or in the next few, Sten and I packed up the Suburban and I watched him drive away.  Always the question hangs of what life will look like the next time we are together.

I returned to the hospital and found a very upset Allistaire in her room.  She was so sad to have Daddy leave and her tummy was really hurting and the pain medicine didn’t seem to help.  Nevertheless we would get up and make our loops around the Unit.  Dr. Leger came toward us and slipped a paper in my hand – the Flow Cytometry results.  No detectable cancer in her marrow.  So great but still my heart slumped knowing the victory over cancer might still be defeated by these wretched side-effects of the very treatment that was actually succeeding at doing away with her cancer cells.  Wouldn’t it be amazing if we found treatments for cancer that only killed the cancer cells?  Wouldn’t it be phenomenal if we didn’t have to poison the kidneys and liver, kill muscle cells in the heart, destroy brain cells, crush hopes of future children by annihilating ovaries?  What is just so blasted frustrating is that there really are treatments that might be able to cure Allistaire from cancer but the very treatment has been so ravaging that she is barred from the final blow to her cancer.  The thought that there is a possible amazing treatment within hand’s reach but may never be attainable because chemo tore her heart, shocked the nerves of her gut to stop working, wiped out the white blood cells that could have defended her against pneumonia and battered her marrow so relentlessly that her life-giving blood cells can hardly rise back up – well it’s simply intolerable, maddening, staggeringly sad.

Dr. Leger told me she would be by shortly to talk with me.  She told me that she’d finally had the chance to sit down with the radiologist and carefully go over all the images.  The mass in her sinus, while still metabolically active as cancer, was actually substantially reduced in size!  So wonderful.  And then, I could not believe my ears, shook my head in wondrous disbelief.  “If nothing gets worse, Dr. Egan plans to go to the IRB on Monday and ask for exceptions to be made for Allistaire.  He’s hoping for a 48 hour turn around and plans to infuse the T-cells on Thursday.”  WHAT????  Apparently Dr. Egan is optimistic that the IRB (Internal Review Board) will approve the exceptions he is asking for on Allistaire’s behalf and expects to have approval in time to give her the T-cells on Thursday.  Wide eyes and jaw dropped in shock and smile.  Apparently the protocol does not count an active infection as an exclusion so her pneumonia will not exclude her.  Even so, she has no symptoms, is being treated with both powerful antibiotics and antifungal drugs and has a rising neutrophil count to rid her of the infection.  But he will be asking for exclusions for her poor cardiac function, lack of sufficient count recovery and the Grade 3 Toxicity resulting from the ileus and thus need for TPN.  I just can hardly take it in.  Monday evening I was practically begging for those T-cells, those cells made just for Allistaire, those cells that may be her last hope, perhaps insufficient to cure, but maybe just to buy her some time for at least more life and maybe for the next step in treatment.

It’s a long shot.  But then again, I look back not just over months but years and I see God’s hand toppling walls, making a way through when there seemed none, holding cancer at bay when it seemed unstoppable, orchestrating so very many circumstances to care for my child.  So many seeming closed doors have been opened.  Man, I have no clue what the future holds.  This crazy life has shown me over and over that you don’t even know how life can change in a flash from morning to night.  I am humbled by God’s gracious hand and I am humbled by the relentless hearts of these doctors who do not stop working to try to figure out how they can help Allistaire.  They rewrote the protocol for this trial last fall to reduce the weight requirement in order to allow young children like Allistaire to have access to these cells.  Dr. Egan went through an extensive process to make it possible for children to actually be given the infusion of cells at Seattle Children’s as before it was only set up for adults to get them at the University of Washington.  Dr. Cooper and Dr. Egan have sent so many emails and had so many conversations trying to strategize on how to open the way for Allistaire.  Even on his vacation, Dr. Cooper has continued to ponder how to care for my sweet girl.  Dr. Leger, the attending doctor, is working in collaboration with Dr. Law and the rest of the heart failure team trying to get Allistaire’s heart in the best possible place.  She connects with the GI team to consider how we might bring about an end of this ileus and converses with the Infectious Disease folks on what to do about her pneumonia.  And then there is our sweet Dr. Tarlock, the very first oncologist we ever encountered, she’s always there in the backdrop, coordinating the details, asking questions, probing for answers.  There are the scores and scores of nurses who draw labs, carefully entering Allistaire’s line many times every day, every time an opportunity for infection.  They put up her meds on the pumps and listen to her little heart, listen for bowel tones, feels for pulses and warmth of extremities.  The CNAs change linens, bring the scale to get her daily weight, weigh diapers and measure throw up all so we can track her fluid intake and output.  They come every four hours to check her blood pressure, temperature and oxygen saturation.  Mohammed and Bonnie are just two of the folks who clean our room and tediously clean the floors, all to rid the Unit of dangers like viruses and bacteria.  Residents like Whitney comb the details of the plan of care, putting in orders, looking for and interpreting test results.  Pharmacists problem solve medication interactions, proper dosing and work with the nutritionists to get just the right combination of electrolytes in her TPN.  Amazing radiologists read scans and radiology techs like our dear Jamie make getting a CT fun and produce a good image.  Dr. Geiduscheck, the cardiac anesthesiologist, carefully reviews Allistaire’s previous sedations and considers a plan and a backup plan to get her through these long scans and bone marrow test.  The pathologist look down at her marrow through the microscope, arrange the Flow Cytometry test and her chromosomes to use FISH probes to look for her MLL mutation.  Sweet Melissa arrives with a wheelchair to transport us from place to place on days with procedures and scans.  There’s also Rosalie the Art Therpaist, Betsie the Music Therapist, Karen and Jeremey on the PAC (Pediatric Advanced Care) Team, Fred and Megan our social workers, and Carrie our Financial Counselor.  This is a crazy long list and I know I am leaving out so many folks whose efforts God has used to sustain Allistaire’s life.  I am gloriously indebted to so many wonderful people, people who don’t just do their job well, but whose hearts and voices cheer us on, wanting and hoping for the best, for a way through.

Today Allistaire was bright, full of joy, dancing in her bed.  She had a little smear of poop in her diaper last night.  I told her we would have a Poop Party when she finally started pooping again.  She told me with the most gleeful voice, “Mommy, I had gas!”  Yay!  What wonderful things!  Callie, the child life specialist came yesterday and played Model Magic with Allistaire much to Allistaire’s great joy.  Today Sierra, the creative writing lady, came to listen to Allistaire tell stories and record them on paper.  Somedays I just feel so overwhelmed with how good our life really is, because it really is just SO full!  It is so radically different from my vision of what I would choose but the truth is it is simply bursting with wonderful people.

It’s a crazy long shot, these T-cells.  Who knows?  They may utterly fail and the end may soon come. But I choose to link fear to wonder, terror to hope, threat of death to a God who overcame death.  There was an Obliteride team with cool blue jerseys, Adaptive Biotechnologies.  I had to look them up. Turns out they do really cool stuff (I’ll include a video below) and started around a cafeteria table at Fred Hutch.  In my search through their website I came upon a video which is the most helpful tool I have found yet to understanding these T-cells that are Allistaire’s hope.  Watch the video.  Don’t skip it.  It is worth every second of your time.  Let your mind be blown, your smile be broad, as you ponder the magnificent intricacies of your flesh, of actions being taken on your behalf a hundred thousand times a day without you even having to ask. My face could not contain the bursting smile of my heart as I witnessed just one wee bit of God’s gorgeous creation.  The T-cells declare the wonder of my God, His wild beauty, His grace toward us.  I choose to link my terror of Allistaire’s death with this God who makes the T-cell.  I choose to yield to Him.  I choose to worship the God of my immune system as the God who gets to choose the path of my life, who chooses Allistaire’s path.  Not only do the sweep of stars above proclaim His glory, but so too here, deep within us, mysteries, wonders, lifetimes worth of exploration and they will continue to elude and excite with their complexity.

(Quick update: as of last night Allistaire had numerous toots and seven poopy diapers!  She ate an entire bag of popcorn yesterday and has had no pain in her tummy for a day, no pain meds for almost 24 hours and hasn’t thrown up since Wednesday morning.  It looks like this ileus may be over and just the need for a slow acclimation back to food and wean off TPN before us!!!!!)

Amazing video on How T-cells Work

Cool video on the Adaptive Immune System and technological advances to understand and harness it!IMG_0757 IMG_0746 IMG_0743 IMG_0742 IMG_0737

Miserable Mess

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IMG_0618“Today is the worst day of my life,” Allistaire said to my mom yesterday.

She hardly smiles.  I try and try and maybe occasionally there is a flicker.  Mostly she just lays in bed, curled on her side, flat expression or grimaces of pain.  The hurt intensifies, the moans quicken.  I glance at the heart monitor and watch her heart rate climb, climb. 150, 160, up and up.  Sleeping these days it’s in the 140s.  Sometimes it’ll dip down to 115.  A normal resting rate used to be in the 80’s or 90’s at night, about 105 in the day.  Her heart is working so hard. A flurry of intensity.

“I’m gonna throw up!!!” she screams and I tell her, “NO, NO, you mustn’t!  You HAVE to keep those meds down.  Your heart is hurting and needs these meds!”  She struggles to hold on, she pushes through and manages a few more minutes until her whole body is taken over by the anguished effort to empty her stomach.  Face contorted with neck thrown back, back arched and bottom jaw stretched as far down as it can go, mouth wide as the constriction of her stomach demands to eject its contents.  Retching is really the word for it.  Great green gushes of dark bile arch into the air and down into the basin.  Over and over her body is racked with contractions.  When at last she is spent and there seems to be nothing left, I ask her if she feels better.  “No, no, I feel worse,” she says with sad haggard voice.

I make her get up and walk.  “Even if you cry the entire time,” I tell her, “you will walk this lap around the Unit.”  She shuffles slowly along, one hand gripping Doggie and the other in mine.  Small warm.  Oh how I love her.  There are greetings as we move through the halls.  Cheers.  “You can do it Allistaire!”  Looks of love and compassion.  So many nurses and CNA’s that have loved us for so long, have watched Allistaire over the years, struggle and victory, defeat and perseverance.  “My tummy hurts,” she cries.  She whimpers and occasionally yells out on our loop, at last she collapses back in bed.

Her heart rate, oh man.  We’ve got to get this thing under control.  Her little heart is working so hard.  Her BNP (measure of heart distress) was 1,700 on Sunday.  I haven’t seen numbers like that in months and months.  Her BNP a week ago was 360 (normal is 0-90).  She had an echocardiogram and her ejection fraction has dropped from 36 two weeks ago to 22.  We are all hoping desperately that this is a temporary hit and not a long term regression.

Late on Thursday evening Allistaire and I arrived at my parents house with the plan to stay the night and get up early the next morning to pick Solveig up from camp.  I so wanted to see her little eager face, to have her tell me all about her week.  I wanted to see the transformation from the scared, nervous girl I dropped off on Sunday to the one that would be beaming with joy.  We had been in the house no more than 5 minutes when I felt Allistaire’s face as she nuzzled up against my leg, having returned from the other room ready to change her attitude.  Oh my gosh she is so warm.  The internal debate, the desperate desire to ignore what I sensed flooded me with heat but my mind sternly declared, “Take her temperature,  just do it, you must.  It doesn’t matter that you just drove all the way here and may have to turn right back around.  Focus.  Take her temperature.”  Solveig’s sweet face lingered in my mind.  I turned to Allistaire.  102.4  A fever.  Oh crap.  We’ve got to go, we’ve got to go.  Allistaire has no ANC, she has no defense.  Something is brewing in her and things can move fast.  103.5  We were out the door and back on the road, speeding through the night.  I talked to the Hem/Onc Fellow on call.  I want blood cultures and antibiotics ready for when we get there.  I talked to the ER.  I don’t want to have to wait.  I drove 70 mph the whole way, rehearsing in my mind what I’d say to the officer if I was pulled over.  Allistaire cried and cried, so sad to not see Sissy.  My jaw was clamped closed, hands gripped on the steering wheel, intent, scanning the night.  My whole heart screamed out into that darkness, “But I have TWO daughters!”

By 3:30am on Friday morning, we were at last settled into our room on the Cancer Unit.  Blood cultures had long ago been drawn and antibiotics were nearly ready to go in for the second time.  All day Friday she fought fevers.  At 13.5 hours something started to grow in the blood cultures – bacteria described as gram positive cocci and chains.  Another big gun antibiotic was added to cover more bad bugs – she was now on Flagyl, Cefepime, and Linezolid.  She has VRE (Vancomycin Resistant Enterococci) which means that if this bacterial infection was Enterococci, Vancomycin would not be enough to stop it, we need something bigger, broader.  With another day’s growth the villain would be revealed as Streptococcus Viridans.

As Saturday began her fevers waned but a new woe broke into the peace of the morning with sharp painful screams.  She was inconsolable.  What could be going on? An X-ray was ordered to look for overt blockage in her gut.  Nothing could be seen.  A CT with contrast was ordered.  For three hours I tried to get Allistaire to drink the contrast, but over and over she would throw it up.  I was desperate.  We MUST get the contrast in or the doctors can’t see what’s going on inside.  Finally, we just decided to go for it and hope for the best, a sufficient image.  Thank the Lord there was no typhlitus but there in the loops of her intestines were great black spaces, gas trapped and a gut that would not move, that had altogether stopped.  When we got back from the CT she threw up a huge amount of contrast.  I couldn’t figure out how she could throw up so much, how so much could still be in her stomach when she had been drinking it over the course of hours.  Well now we knew, for some unknown reason, Allistaire has an ileus.  There is no physical blockage but there is a mechanical one, her gut won’t move and so that gas is just stuck in there and whatever she puts into her stomach just sits there until it is forced upward.  She was immediately made NPO (Nothing Per Oral – meaning she can’t eat or drink). After much conversation and a consult with the GI docs, it was determined that she would be allowed a few occasional sips of water and to take her oral cardiac meds that cannot be converted to IV.

This ileus is a mystery.  We don’t know what has caused it.  Regardless, it is incredibly painful for Allistaire and she is now on frequent pain meds and anti-nausea meds.  Despite being NPO, her stomach continues to make acid and therefore regularly fills and requires her to retch it all up.  The GI doctors recommend her regularly curl up with her knees tucked under her stomach, her little bottom in the air, in hopes that the gas will slowly move up and out.  We now have an activity plan and walk around the unit hoping the movement will help her gut to get moving.  The next step will be to add a medication that can help wake up the gut by blocking certain receptors.  A third step would be to have a NG (Nasogastric) tube placed to suction out the contents of her stomach and giver her relief.  As you can imagine, Allistaire is terrified of this prospect. The reality is that this will simply take time to resolve, there’s really much we can do directly to solve this.

Not only does the ileus create immense pain for Allistaire which raises her heart rate but it also necessitates that she be on TPN (Total Parenteral Nutrition) which is essentially getting all of your food by IV since her gut is not functioning.  Being on TPN is viewed as a “Grade 3 Toxicity,” which in turn bars Allistaire from being eligible for the T-cell trial.  While we assume the ileus will resolve and she will have no problem eventually returning to eating normally, while on TPN she is disqualified from participating in the T-cell trial.  Because this means that the possibility of getting the T-cells is firmly put on hold until her gut starts to function again, the cardiac anesthesiologist did not feel it worth the risk for her to be sedated today (Tuesday) for the planned PET/CT, brain MRI and bone marrow aspirate used to determine the state of her disease.  The fact that Allistaire is throwing up would necessitate he put in a breathing tube during the sedation so that she won’t aspirate.  A breathing tube increases the risks of the procedures and he was considering arranging an ICU backup plan.  All her procedures have been cancelled for now and will hopefully happen the beginning of next week in hopes that with more time her heart function can improve and perhaps so will the ileus, thus reducing her vomiting and that all in all sedation would be less risky at that time.

All of this is incredibly disappointing and scary.  Since Allistaire’s gut is not functioning, everything must be converted into IV form which means a ton of fluids are being pumped into Allistaire’s veins which in turn creates much more work for Allistaire’s heart.  Normally all her food and liquid and medicines would go into her gut, not at all adding work to her heart.  This is a vicious cycle.  She’s in crazy pain so we give her pain meds.  The pain meds, even the non-narcotic ones, act to keep her gut suppressed, but her pain causes higher heart rates.  Until the ileus resolves, she is taking in a ton of fluids (even though this is being tightly monitored, restricted and managed by Lasix) which is also hard on her heart.  You can’t use Lasix too much to get her to pee off fluid because her kidney’s don’t like it.  Already today her BUN is 42.  I want to throw up my hands.  Today her BNP was 2,600.  I know it is nearly doubled simply because she had a transfusion of red blood yesterday.  Man, we need her ANC to come up.  We need her marrow to recover so she doesn’t keep needing transfusion.  Everywhere I turn there are things we desperately need to look different if she’s going to have a shot at making it.

Dr. Cooper reminds me that this is exactly the sort of scenario the doctors have described to me that can happen with chemo that suppresses her counts to zero.  The only chemo that really has a shot at taking down her disease also wipes out her white blood cells which defend her against all sorts of bacteria and viruses.  To get an infection almost always means the necessity to respond with an increase in IV fluids of various types.  Her heart just limits everything that can be done.  But here’s how I see it: we know the outcome if Allistaire is not given chemo of any significant strength – her disease will progress and we won’t be able to stop it.  She will die.  The alternative is we give her chemo that may stop her disease while opening her up to awful infection possibilities but that she may be able to make it through.  One choice leads to only one end – death.  The other has the chance to work and just maybe infections won’t be the death of her.  Maybe just maybe there’ll be a way through for her.

Statistics.  Oh what deafening power they seem to possess.  Allistaire probably won’t make it.  The likelihood is that she will die.  Even from the time she was diagnosed she only had about a 60% chance.  Relapse wipes that percentage down to nearly nothing.  Almost exactly two years ago, when disease was found after transplant, the doctor told me Allistaire had a 5% chance of survival and probably wouldn’t live 6 months.  Okay.  So a 95% chance she’ll die.  But she didn’t die in those 6 months and two years later she is still here fighting.  Somebody has to be the 5% is what I declare to myself over and over.  Allistaire just may be in that 5%, who knows?  And you know what?  Statistics say Allistaire should never have begun this crazy path.  Her type of AML, M5, only constitutes 2.5% of all children diagnosed with leukemia.  Only .8 to 1.1 in a million children are diagnosed with M5 AML each year.  She is literally one in a million.  So while she may only have the slightest chance of survival, well chance, chance really has nothing to do with it.  Chance has no power.  Chance is simply an observation of what most often occurs.

I call out to the Lord over and over because I believe it is He that holds her life.  He is the one to determine her path.  It is not chance or probability or statistics that determine the outcome of this brutal road, but the Living God, my Father.  And it is a peculiar sort of wretchedness to know that the one I love, the One who declares to love me, the One who is able to sustain her life…He may not.  He may allow death to come and swallow my sweet child as He has so many other children.  On the surface this seems to be an ultimate hypocrisy, and ultimate deceit – not love but horrific cruelty, betrayal.  But He calls me to His Word – to fix my eyes on Him and to be reminded down into the core of me, that He is God, GOD!! It is His to give life and bring it to an end.  It is His to determine the course of my life, the course of Allistaire’s.  He reminds me to separate an audacious 21st Century American view that I have some sort of right to a healthy 80 years on this planet from what He declares this life to be about.  Because it is not about marking off the bullet points of beautiful childhood, rigorous college education, fulfilling meaningful successful career that gets me enough money to have a nice house and vacations for myself and my perfectly attractive, wonderful spouse and children followed by a leisurely retirement and at long last a pain-free dignified death surrounded by everyone who has loved me and honors my amazing life.  No, really God makes a much simpler claim to what this life is about.  He says this life is about coming to see that HE is the source of life, true, eternal, abundant life through the death and life of His son Jesus Christ.   And if you have come to see Jesus as the only source of life, then go, go, live your life in such a way as to draw the attention of others to see His resplendent beauty – Christ – not a path to life but Christ who IS life itself.  Christ is not my guide.  He is not my sherpa hauling water and nourishment for me as I walk through this life.  Christ Himself is the very way, He Himself is the water, the food, the healing.

So who am I to say what my life should look like?  Who am I to say how many days I ought to be allotted or what circumstances should fill them?  Over these long years the Lord has worn me down, cut here and there, gouged out, cauterised.  It has hurt.  At times it has been agonizing.  There is still much work to be done on this proud, self-sufficient, trembling heart.  But I can say, that somehow, mysteriously, I am coming more and more, millimeter by millimeter to trust Him more, to rest, truly rest in Him.  Honestly, I really don’t think Allistaire will make it out of this alive.  I am utterly confident that God can make a way through for her.  He has made a way through many times when it felt like all the walls were crashing down on us.  He can do it again.  He may and that would be glorious and oh how I would rejoice and rejoice and thank Him for all the days that He has carried her so far.

But there is a way in which I feel like I am just living out days that must come.  We cannot say we are done because she is far to alive.  As long as there is an open door before us and Allistaire still seems to have vitality, we will walk forward.  But somehow it feels that we are coming down to the end of things.  I guess the oddly beautiful thing though, is I’ve stopped caring so much about what will be.  I sipped warm foamy latte yesterday and realized that I have been going to that coffee shop and drinking that coffee all through fall into winter into spring and now summer.  Fall is coming.  I cannot begin to imagine Fall.  There is no end in sight and what I mean is, I am no longer fixing my gaze on the end.  At long last, I am coming more and more to dwell in this present.  To feel the incomprehensible soft wonder of peach fuzz along the curve of her forehead down across her little nose.  I am soaking up the sensation of her little bottom tucked up against my stomach as we lay in the bed together, my fingers running through her flaxen hair.  I rest my cheek on her cheek.  I listen intently to her voice.  With gentleness I change her diaper.  With sternness I demand she take her meds.  I live out each task and detail.  I want to fully inhabit not just these days but all the moments and actions that accumulate to eventually be gathered up into the satchel marked “day.”  I look over labs, all those little numbers painting a picture of her flesh, telling a story of the tug of war of life and death, sickness and health.  The numbers, how they have for so long knocked me off my feet, casting dark shadows over so many days.  Their power is slowly draining away.  I can control so little.  The doctors have so very little power.  We are all just doing our best, but really, it’s out of our hands.  I have not relaxed my guard over her, I will not let up in my fervor to examine every last angle, but no longer do I grip her with white knuckles desperate and crazed.  She is my sweet little love and I will do my best to care for her every moment and every day given to me.

Yesterday evening I stood looking out across Lake Union toward the beautiful Seattle skyline, the sun having already set, leaving mellow pinks blending with the last of the day’s blue.  Behind me cheerful, high energy music played and hundreds of people gathered.  Doug, the camera guy, said it best – “beauty and affliction.”  There’s just so much of that.  How strange that the thread weaving all these people together, people dancing, drinking beer and chatting – we are all bound together by sorrow, by loss.  Last night was the big Obliteride kick-off party at Gasworks Park.  I had the opportunity to stand up for a few minutes and relay a bit of Allistaire’s story and the incredible need to advance cancer research.  I dwell within just one story among thousands and thousands, millions really, of stories about how cancer has stolen away those beloved, cherished, bright.  Today I have the joy of having some fun team time with the Baldy Tops. Tomorrow we will put into action all that we have prepared for.  We will swing our legs up and over that frame, hoist ourselves onto the seat, clip into pedals and at long last flex…will our legs muscles to contract, propelling us forward, down the route.

Thank you ever so much to each of you who have given sacrificially of your own money, money you could have spent a thousand other ways, but chose to give to directly enable the furthering of cancer research.  I’ve said it before, but I’ll say it again.  It all seems so abstract, science, experiments – weird stuff.  But it’s a real man like Stan Riddell who is an immunology expert at Fred Hutch.  I saw him standing on the outskirts of the party at Obliteride last night.  I introduced myself.  I looked into his eyes and told him thank you, thank you.  He went on to tell me that he is the doctor that trained Dr. Bleakley, Dr. Gardner, Dr. Jensen.  Dr. Bleakley is our amazing transplant doctor who designed the naive T-cell reducing transplant that is attempting to minimize the awful impact of GVHD as a complication of transplant; this was the transplant we had so hoped Allistaire would be able to have.  Well, you know Dr. Gardner as one of our beloved smarty pants doctors who has cared for Allistaire so long.  What you may not know is that along, with Dr. Jensen who is the lead researcher at Seattle Children’s Cancer Research specializing in pediatric cancer research, she heads up the amazing T-cell trials at Children’s for the more common type of childhood leukemia, ALL.  I met Stan’s family – his wife and two daughters.  I told them thank you for the sacrifices that they have had to make to have a father who would spend so much time at work, in the lab.  Your money goes to real people, doing real amazing work.  When we fund cancer research we are putting more tools and time into the hands of these brilliant minds who work feverishly to understand the staggering complexity of cancer.  You free them up from having to spend so much time scrambling to cobble together enough money for the next trial.  You help them design and pay for that crazy cool piece of machinery that doesn’t test 10 samples of DNA but a thousand.  You help pay for the lab assistant who will run the experiment and enter the data.  All of this enables research to happen at a greater pace, speeding up the discoveries that lead to cures.  This is where your money goes.  Perhaps it still seems abstract, like just writing a check because you love Allistaire, your heart hurts for our family and you just want to do something, anything to help.  Well, for that I sincerely thank you, but just know…know that not only do we feel loved and supported by your act of giving, but it is making a real and tangible impact, not just for Allistaire but for many children, many adults.  Perhaps one day you will be the one to benefit from advances in cancer research.

Since I began this post many days ago, Allistaire’s ANC has popped up to nearly 300.  While Friday’s echo still showed an ejection fraction of 22, her heart rates are drastically lower and nearly normal.  The cardiologists have added two more medications to try to improve her heart function – Isosorbide dinitrate and Hydralazine.  There is no resolution of the ileus yet and she remains in pain but her cheeriness has improved and she’s actually joked around a bit.  Her legs have gotten stronger again and we’ve doubled the distance of each walk.  A PET/CT, brain MRI and bone marrow are all tentatively scheduled for Monday.

For Obliteride pictures and updates check out the Obliteride Facebook page and/or the main Obliteride website.IMG_0575 IMG_0576 IMG_0580 IMG_0584 IMG_0595 IMG_0602 IMG_0606 IMG_0611 IMG_0614 IMG_0620 IMG_0625 IMG_0627 IMG_0628 IMG_0629 IMG_0639 IMG_0642 IMG_0647 IMG_0649 IMG_0652 IMG_0663 IMG_0666 IMG_0669 IMG_0671IMG_0660

 

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

Juicy

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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

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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