Tag Archives: Allistaire

Lung Biopsy

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IMG_1792I met with Dr. Cooper for Allistaire’s clinic appointment last Wednesday afternoon.  The results of the week’s testing were mixed.  The bone marrow test showed no leukemia detectable by Flow Cytometry which is an awesome improvement from prior to this round.  Previously the Flow test showed about 3% and the cytogenetics FISH test showed 6%. We don’t have cytogenetics back yet from this most recent bone marrow test.  The PET/CT affirmed what the brain MRI showed from two weeks ago with significant improvement in the chloromas in her sinuses.  The trouble is, there are also spots in her lungs that have showed up.  Because the resolution of the CT done with the PET is low, Dr. Cooper wanted a high-resolution CT of her lungs.  It took a mere 15 minutes to leave clinic, check in with radiology, walk back to the CT machine, get Allistaire loaded in, hold her breath at the right time and we left the hospital arriving back at Ron Don.

While I was totally relieved to hear good Flow Cytometry results for her marrow, the spots in her lungs pose a major, major problem.  There are three options – they are chloromas/leukemia, fungus or bacterial.  Dr. Cooper relayed that Dr. Bleakley, the BMT (Bone Marrow Transplant) doctor said that if these are chloromas they indicate an incredibly aggressive cancer (given that the chemo isn’t successful at keeping her cancer down even for a short time) and she will probably not be offered a transplant.  No transplant obviously means the end for Allistaire.  The other options, fungal and bacterial, represent infection which would require some aggressive treatment.  Allistaire’s bone marrow is so beaten down that it is barely recovering from the last round of chemo.  Her ANC (Absolute Neutrophil Count) was 64 as of Sunday’s labs.  Today is about Day+48 of this round of chemo.  Typical bone marrow recovery is an ANC of 200 by Day+28.  This means she has very few white blood cells to fight any infection.  So while she has no symptoms of infection, she also has very little to fight with and would have even less once another round of chemo begins.  In a way we must hope that these spots are infection because this at least gives her an option to go forward.

Given that it is imperative to know the nature of these spots, Dr. Cooper said doing a lung biopsy would be necessary, but of course if was my choice.  My choice?  I suppose so, but to say no to the biopsy would equate with choosing to be done.  Amazingly, the biopsy was able to be scheduled for Friday afternoon, with the plan to go into clinic in the morning to get platelets first.  Strangely, Allistaire’s blood pressure was incredibly low, even lower than its normal low.  The strategy of the heart failure team is to push Allistaire’s cardiac meds just as far as they can without totally bottoming out her blood pressure.  They continue to titrate up her meds every Wednesday, alternating between going up on the dose of Entresto and Carvedilol.  So while the purpose of the cardiac meds has nothing to do with trying to lower her blood pressure, this is the direct side-effect.  On Friday her pressures were in the low 60s over mid to low 30s.  More typical blood pressures for Allistaire are 80s over 40s.  She was examined by the nurse practitioner and the clinic attending doc who both agreed she looked great – bright, energetic, engaged, good capillary refill and strong pulses.  Her pressures came up slightly after the platelets.

Finally it was time for the biopsy and the surgeon explained that first Allistaire would go to CT where the Interventional Radiologist would use CT to guide the placement of a needle within which there is a small wire.  Once the IR doc locates the spot in the lung that is the target of the biopsy, he places the needle and then removes it, leaving the wire.  She would then be transferred to the OR where the surgeon would remove the spot using a tool that places staples on two sides and has a blade on one side to cut out the spot.  He said that most likely she would leave surgery with a chest tube to help drain fluid rather than allowing it to build up within the pleural space while the hole in the lung sealed back.  He said it could take anywhere from a few days with the chest tube up to a few weeks and that it would be quite uncomfortable.  As I was about to leave Allistaire in CT as she had just fallen asleep, the anesthesiologist looked concerned.  She told me that she wasn’t sure they would able to continue with the procedure if Allistaire’s blood pressures did not remain stable given how low the base line pressure was.  As I walked out of the room with a weighty heart, 59/30 shone green on the monitor.  Would she make it through this procedure?  How desperate we are to know what is going on in there.

Thankfully, all went well both with her pressures and the procedure.  She was already awake by the time she was transported from the OR to recovery.  Soon she began to complain of burning pain in her chest.  She was given a dose of Dilaudid and began to calm down.  An X-ray a few minutes later confirmed that the pain she was having was from the chest tube tunneled under her skin.  Her oxygen saturations were dropping every so often because she didn’t want to take deep breaths due to the pain from the chest tube.  She was transferred up to the Cancer Unit Friday evening where she was given morphine every 2 hours.  Allistaire was very quiet and went in and out of sleep as she watched movies.

Saturday began with an x-ray to look for fluid, air or gas filling the pleural space.  I was surprised to learn that because there was minimal drainage from her chest tube and the X-rays were looking good, the surgeons decided to turn off the suction on her chest tube.  They would check it again in four hours and then take another X-ray.  If all looked good, they planned to pull the tube.  So around 5pm, the surgeon, nurse and I strategized on how best to pull the tube.  I made a commitment to Allistaire many months ago in the ICU to always tell her if something scary or painful was going to happen.  But I’ve also learned that for Allistaire’s sake, it is best to tell her as last-minute as possible as she often gets really worked up with a lot of anticipatory fear.  The nurse quickly ran a dose of Dilaudid over 5 minutes and I curled up next to her in bed.  I told her the surgeon was here to remove the tube because her lung was looking so good.  He would remove the gauze, cut the stitches and when he was ready to pull the tube, he would tell her to blow out of her mouth which helps to keep air from entering the body in the small space of time between when the tube is pulled and the dressing is placed.  Allistaire was terrified and kept asking when did she need to blow.  The truth is I don’t even think she felt the tube come out given that there was no indication it was out and suddenly it was all over.  She did a great job, she was very brave.

From this point, Allistaire had another X-ray four hours later and then at the 24 hour mark from the time the tube was pulled.  Because all continued to look good, she was able to be discharged yesterday evening.  She only needed one dose of pain meds once the tube was pulled.  The day was fairly uneventful with the exception of being given some misinformation about results of the biopsy.  I was told that a person from ID (Infectious Disease) said that this (the spots in her lungs), looked more like a disease process.  While the attending doctor was later able to clear this up, saying that there were absolutely no results yet, I spent several agonizing hours contemplating the reality that Allistaire’s options had finally come to an end.

I can’t be fake with Allistaire.  She is so intuitive, so sensitive, so incredibly sweet and tender.  I couldn’t stop crying.  I just stared out the window at the steel gray clouds interspersed with late afternoon sunshine.  “What’s wrong, Mommy?”  I tell her the spots in her lungs look like more sickness and if this is true, she can’t have her transplant.  The other day she asked why she can’t just keep getting tubie medicine.  I had to explain that her body just can’t handle it.  How can I explain to a 5-year-old that inside her sweet tummy are kidneys and a liver and a heart and lungs and white blood cells?  How do I explain that iron builds up in your body with every transfusion of red blood and eventually you will die from iron poisoning.  This is not a chronic illness.  This is an acute, deadly disease.  “Your tubie medicine is poison, Allistaire, it kills cancer cells but also hurts your body.”  On this day, as I cradle her warm little body, her soft luxurious curls against my cheek, I think of what my friend Esther wrote.  About the desperate need to soak her in, to burn every memory into my brain, so that when she is gone, I can find her again, if only in memories.  But I can’t, I can’t.  It isn’t enough.  I hold her tight, desperate not to let her go.  “I just hope I won’t notice it happening,” Allistaire tells me about the fact that she may die.

I let her go back to her movie and her model magic.  I stare out again at the gray.  What is the best way to let her die?  Do we even try another round of chemo?  Do we try to extend her life just as long as we can?  But might this mean letting that wretched tumor grow in her face?  All that pain.  I think back to four years ago.  These were the dreary November days that she just slept and slept.  She would be asleep for five hours in her crib taking her nap.  I would debate with myself whether or not to go wake her or just let her sleep.  I feared finding her dead in her crib.  She wouldn’t crawl up the stairs anymore.  She had little interest in eating.  On December 1, 2011, I would first learn the word, “hematocrit.”  Her’s was 9, just a mere 25% of her red blood.  She had absolutely no energy and her heart beat fast like a little bird, desperate to pump those meager cells around her body.  Maybe this is the way, I consider, just let her go quietly.  She wouldn’t even notice.  She would just fall asleep.  Her heart wouldn’t be able to keep up.  Maybe this was the most gentle way to let her go.

I still don’t have biopsy results.  In fact, I didn’t expect to get them until today or tomorrow anyway.  But soon I will know.  I woke up in the night.  What do we do if they say no to a transplant?  I’ve thought of so many other desperate stories where they allowed transplant, even were there was little chance it would work.  Why deny Allistaire the chance?  This one last chance.  If they say no here, do we try taking her somewhere else?  These are the doctors in whom I have placed my trust.  They have earned my respect.  They know Allistaire.  They genuinely care for her.  Do I just disregard their counsel, their decisions and rush out into the fray, unwilling to lay down this battle?  The doctors have always told me, you will know when it’s time.  But this?  At this point I feel no peace, no rest in stopping.  It doesn’t feel clear at all.  I always hoped, assumed, it would be clear, that if at last there were no more options, no more open doors, I could at last say okay.

As always, the world operates on a calendar, on schedules, on days of the week.  I heard my first Christmas song three days ago and all I felt was shock.  Has the world again shifted, are we already at another holiday season?  Sten and Solveig and Sten’s parents are coming for Thanksgiving.  In times past, we always cut down our Christmas tree the day after Thanksgiving, one of my very favorite traditions.  I always looked forward to that day, the day I would pack away all the oranges and browns of Fall and pull out the silver and glittery of Christmas.  All just seems desolate, empty.  I just wanted this one last chance for Allistaire.  Just this one chance.  Oh God.  Please.IMG_1804 IMG_1802 IMG_1800 IMG_1798 IMG_1796 IMG_1795 IMG_1794 IMG_1791 IMG_1790 IMG_1786 IMG_1784 IMG_1782 IMG_1750 IMG_1749

Numbers, Wild Numbers

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1975

2013

2,650,000

6,800,000

8,000,000

So something cool happened.  Forty years ago, in the year 1975, I was born.  I know, sweet, huh?  Just joking.  I mean I’m pretty stoked I was born but what my parents could not have imagined as they gazed down at their newborn baby girl’s little face was that something else significant had just been created.  Little did they know that blue-eyed baby girl cradled in their arms would one day desperately need what also had its beginning in 1975.  In many respects I think it is grace that we do not know the future, that we don’t have to carry burdens in the present of situations yet to come.  At that moment of my birth there was only joy, well my mom would probably say a little pain too.  And yet isn’t it amazing that long before we have a specific need, the provision is often already on its way to being available and ready for us? And so it was that in 1975, Fred Hutchinson Cancer Research Center came to be and would one day dramatically intersect the life of that little baby girl and her baby girl.  Beautiful.  Makes me smile BIG!

In the spring of 2013, there was a blue-eyed feisty three-year old girl named Allistaire.  Turns out she had an aggressive type of leukemia that just wouldn’t back down in the face of every type of chemo thrown at it.  It had come back after lying dormant after standard treatment and this time it was winning, filling her marrow and infiltrating the rest of her body with numerous tumors.  The doors just kept slamming closed.  But then, but then…a door opened.  Allistaire had the amazing opportunity to have her disease filled marrow obliterated and then rescued with an infusion of donor bone marrow stem cells from a woman in Germany.  This was only possible because of a wondrous clinical trial through Fred Hutch.  Had it not been for that trial, for that single open door, there is no doubt Allistaire would be dead in the ground right now.

Time after time Allistaire has been the blessed recipient of the expertise and amazing research through Fred Hutchinson Cancer Research Center.  I will always be indebted to that institution and its many phenomenal doctors and support staff!  It is my joy to commend them to you and to keep seeking to add to their ability to propel research forward and provide more open doors for children and adults alike who find themselves facing that wretched beast Cancer.

And WOW!  WOW!  Look at what we’ve been able to do!!!!!  This year, in August 2015, thanks to your incredible generosity, compassion and support, our Obliteride Team Baldy Tops raised $38,000!  In total over the past three years riding in Obliteride, our team has raised nearly $60,000 for cancer research at Fred Hutch.  This year’s ride raised $2,650,000, totaling $6,800,000 since the inaugural ride in 2013.  One hundred percent of that $6,800,000 goes directly to cancer research at Fred Hutch!  It makes me giddy.  Sometimes one’s efforts feel small.  It’s hard to put yourself out there and ask people to give of resources they could spend on themselves, and instead give it away for the betterment of others.  Then again, you never know when you might find yourself in the desperate position of needing another open door in your own battle against cancer.  When we put our efforts together they can have a BIG impact!!

Would you like to join us?  Our team this year was super fun and included Sarah from Utah – an amazing woman I had never actually met until the morning of Obliteride.  You should have seen her face when she finished her 50 miles – a beaming exuberant smile!  Also on our team were two fantastic nurses, Lysen and Adrienne, from the Cancer Unit at Seattle Children’s where Allistaire receives treatment.  Adrienne and her awesome dad rode on an old tandem bike (and I do mean old).  Carrie, our amazing financial counselor at the hospital joined us as well along with her friend Eric, a local business man who wants to give back.  And of course I had my dear sweet sister-in-law Jo by my side along with my oldest friend, Emily.  Jo’s sister, Annie, also joined us.  Her little baby boy, Marzio and husband, Franky cheered us on.  It is such an amazing experience to be in a swarm of people gathered together for one purpose, each brought to that day by their unique stories.  Obliteride has put together a short little video of this year’s ride to give you a taste of the experience.  You’ll get to see several shots of our team (I have on a blue helmet you see a few times.) Click HERE.

The beauty is you don’t have to be a cyclist to participate in Obliteride.  There are rides from 10 miles to 150 miles, from quick and easy, to covering two days and lots of hard-core hills.  Wherever you are on the cycling spectrum, there’s a place for you to have fun and give directly to cancer research.  Even your kids can get involved with the special kid’s ride.  The 2016 ride is over the weekend of August 12-14th, so mark your calendars to ride with us or be a volunteer.  Registration will open early 2016 and of course I’ll keep you updated!  If you’re interested in being on our team Baldy Tops, please simply leave a comment on this post and I’ll include you in my Obliteride emails.  Wouldn’t it be awesome for our team to reach the $100,000 mark with the 2016 ride?!  I can’t wait!  Here’s another fun video to give your more info on how to get involved in Obliteride.

This year is drawing to a close and you may be considering where to give your remaining 2015 donations.  While it isn’t yet time to fundraise again for Obliteride, you can still give to amazing cancer research at Fred Hutch.  One specific way is to support Dr. Marie Bleakley’s work.  She has been one of Allistaire’s primary bone marrow transplant (BMT) doctors at Fred Hutch for the past several years.  She is the BMT doc who is directing Allistaire’s upcoming (hoped for) transplant.  Like most of Allistaire’s doctors, not only does she do an incredible job clinically caring for patients, but she does amazing research.  One focus of her research is TCRs (T-cell Receptor T-cells).  You will remember that this is the sort of immunotherapy Allistaire received with her WT1 T-cells.  In the HA-1 T-cell immunotherapy that Dr. Bleakley is designing there are specific matching and mismatching requirements of the donor and patient which on one hand limit their applicability to a wide range of patients, on the other hand, they are not limited solely to patients with AML but could benefit patients with a variety of types of ALL (Acute Lymphoid Leukemia) and Lymphoma as well, thus expanding their impact.  Dr. Bleakley says that, “There are actually numerous targets like HA-1 and different targets will work for different patient-donor pairs. We are trying to build a toolbox of TCRs so that we can ‘type’ the patient and donor and figure out which TCR will work for them.”  This is personalized, targeted, sophisticated beautiful cancer treatment.

Dr. Bleakley has already been awarded a Bio Therapeutic Impact Grant of $682,000 from Alex’s Lemonade Stand (ALS) whose vast majority of funding goes directly to pediatric cancer research. I am told that 85 cents of every dollar donated goes to program and research grants with the vast majority of that going to the research end. Their program grants go to family’s to provide one lifetime grant of about $1,400 which we ourselves received two years ago in the form of plane tickets home for Allistaire and I.  Dr. Bleakley is able through Alex’s Lemonade Stand to raise up to an additional $25,000 in donations through the end of 2015. For every dollar up to $25,000, ALS will match one to one. So in total she could raise $50,000 additional to go toward her research.

This is an incredible opportunity to fast-track her research in the lab to actual patients.  The next step for her research is to take what they have been doing in the lab and bring it to a GMP (Good Manufacturing Process) lab. This independent lab would, with the aid of her research assistants, recreate their work in order to determine the safety and quality of the product they say they are producing. She said it’s like a dress rehearsal for the real process in which they would prepare the cell product for the patient. The information is taken and included in an IND (Investigational New Drug) Application for the FDA to approve. Once approved, they can then move forward to offering an actual clinical trial to patients. Basically they are at the point of taking their research in the laboratory and offering it as treatment to patients – that means an open door for patients with leukemia and lymphoma!  An open door!  You could help open that door.  To learn more about her research click HERE.  To donate and have your dollars matched one to one up to the goal of $25,000, click HERE.

You know what…At last count, Allistaire’s cancer treatment has cost just shy of 8 million dollars.  That’s more money than all riders have raised in total over the three years of Obliteride.  That is a crazy, mind-blowing number!  My jaw drops every time I think of that number.  Wouldn’t it be WAY COOLER if we could invest in research upfront that would reduce the cost of treatment, reduce the suffering, reduce the incredible investment of time of Allistaire’s life and our family’s lives fighting this fight?  When we put money upfront to accelerate research, we open more doors!  What if we didn’t have to rely on chemotherapy that isn’t targeted and takes down hearts and lungs and kidneys and livers and ovaries with the cancer cells.  What if there was a way to deliver radiation so that it only killed tumors and not brains.  What if surgeons could “see” exactly where tumor cells stopped and healthy cells started, getting all the cancer and sparing the rest? Wouldn’t it just be mind blowiningly awesome to use the incredibly complex, beautiful immune system you already have in your body to effectively and totally wipe out every last cancer cell so that “relapse,” is word never again uttered!  When we put our money and effort into research, it isn’t just one patient that is benefited.  Who can know how many people will be blessed by each step forward in cancer research.  And this is a world-wide endeavor!  Do you know that amazing minds are at work all over this earth trying to untangle the mysteries of cancer?!  Israel, Germany, China, Italy…What is learned here carries value across the world and their efforts likewise bless us!  Do you know that Fred Hutch has a cancer treatment clinic in Uganda?

As I have said many times, there are many worthy places to give of your time and money, many struggles on this earth that deserve and need our attention.  It just so happens that cancer came barreling into my life and so it does for many, many of us.  Cancer will touch us all, if not directly in our flesh, then most certainly in that of someone dear to us.  One in three women will get cancer in their lifetimes as will one in two men.  Thank you for the great swelling of your compassionate hearts that listened and responded in generosity and love.  May you find many open doors!!!

As for our little bright love, Allistaire Kieron Anderson, well, she thrives, she runs, she hops, she laughs silly little giddy laughs and she told me today that the numbness in her face is finally gone.  She looks incredibly good.  Only every now and then can I detect that her right eye is slightly off.  Yesterday she had a bone marrow test and today she had her PET/CT.  We should know results soon.  Hopefully the general trajectory going forward is one more round of chemo which will include Decitabine and Mylotarg again, though likely only one or two doses of Mylotarg this time instead of three.  Then, God willing, she will have her transplant.

We’ve been at this point before.  I am no fool to believe the road ahead is necessarily clear of barricades.  It as though she walks through a field replete with land mines. To get across to the other side will take a miracle, so fraught with danger is the road ahead.  Even yesterday, she had an echocardiogram which reported out an Ejection Fraction of 34 versus 45 last time.  I don’t know how the BMT doctors will interpret this.  The cardiologists say her heart function looks the same as it has on the last two echos despite variance in the numbers.  Thankfully her cardiac MRI showed no scarring and affirmed great improvement in her heart.  Going forward with chemo always opens the door to infections.  Two and a half weeks ago she went inpatient due to an infection and the next day she had a separate issue with an extreme rise in her liver function numbers we finally concluded was due to her anti-fungal, posaconazole.  Her ALT and AST were 1,156 and 1,450 respectively, the normal high being 40.  It has been imperative to get these numbers down and get her liver happy again as Mylotarg’s one direct toxicity can be to the liver both in the setting of when it’s given and in transplant.  Just getting to transplant is an incredible undertaking, then there’s the transplant process itself which holds many extreme dangers.  If you get past all of that, you still have to contend with the possibility of GVHD and relapse.  Thank you Lord that you have used these past four years to help me learn more and more how to walk day by day.

To learn more about the fascinating history and endeavors of Fred Hutchinson Cancer Research Center, click HERE

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Traction

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IMG_1475IMG_1286(Top pic: Allistaire 14 days after the first of three doses of Mylotarg; Bottom Pic: The day before the first dose of Mylotarg)

In late August of this year, eleven native Christian missionaries near the town of Aleppo, Syria were killed for their refusal to deny Christ and return to Islam.  Three were crucified and eight were beheaded after the women were publicly raped.  According to villagers who witnessed this, one woman reportedly “looked up and seemed to be almost smiling as she said, ‘Jesus!”

Perhaps you don’t believe this report.  I immediately thought of Stephen who stood up for what he believed, that Jesus Christ was the prophet God had promised to His people Israel and to Moses.  In the face of his life being threatened, he refused to back down.

Acts 7:54-59:  “When the members of the Sanhedrin heard this, they were furious and gnashed their teeth at him. But Stephen, full of the Holy Spirit, looked up to heaven and saw the glory of God, and Jesus standing at the right hand of God. “Look,” he said, “I see heaven open and the Son of Man standing at the right hand of God.” At this they covered their ears and, yelling at the top of their voices, they all rushed at him, dragged him out of the city and began to stone him. Meanwhile, the witnesses laid their coats at the feet of a young man named Saul.  While they were stoning him, Stephen prayed, “Lord Jesus, receive my spirit.”  Then he fell on his knees and cried out, “Lord, do not hold this sin against them.” When he had said this, he fell asleep.”

When I went to wake her, a stream of blackish blood had dried across her cheek as she slept.  Sometimes I would hold up my hand to block the right side of her face from my view, so that I could only see her left, so I could see the girl I recognized, my sweet Allistaire.  She would just cry and cry holding her little hand up to her right cheek.  She couldn’t close her jaw on that side, her teeth wouldn’t fit together, making eating difficult and painful.  Her eye was so bulged out and full of trapped fluid that I could barely see her iris.  I gave her as much oxycodone as the doctor allowed and let her sleep except for brief periods of eating.  I sat on the bed in the dark, only the glow of the computer screen visible.

Outside the world was bursting with life on beautiful fall days.  We were trapped in ever-deepening darkness.

At some point in the span of these brutal days, it suddenly occurred to me, the thought seemingly out of the blue…I am not afraid.  I am not afraid of Allistaire dying.  I am not afraid of the many awful ways situations in my life may turn out.  The realization shocked me but as the words formed in my mind, my deeper self affirmed, fear no longer has me caught by the throat.  I am released.  I have been freed from its strangling grip.

When I read about the woman, already raped, about to be beheaded, the woman who seemed to smile as she said, “Jesus!”…I nodded my head, yes, yes I can see how such a thing could be true.

People say to me all the time – ALL the time – I don’t know how you do this.  Behind such an astonished statement is the desperate hope that we will never be forced to endure such realities.  We look at our weak small selves and proclaim – I could NEVER do that!  Because we don’t want to, because we have created some sort of system in our mind, some law of the universe we desperately hope is true, that if I can’t endure something, I won’t have to right?  But the truth is – the world IS full of suffering and human beings have had to endure terrors far beyond their little girl having cancer and having to watch a tumor gnaw away her face.  We are resilient beings.  You do what you have to do.  We are overcomers and we crave such stories, it is core to our humanity.

With tenacity, with grit, with determination, with perseverance, perhaps with sheer rage, I can make it through this.  I can make it through, if even the worst comes to Allistaire.  But.  This is human effort.  This is what my flesh can muster up.

The paradox, the absolute resplendent beauty and otherness of God says, “No.  No Jai.  I will use these circumstances with Allistaire to tear you limb from limb.  I will allow you to be decimated.  I will crush you so that you gasp for breath.  I will gouge at your heart.  You will know anguish and darkness.  Panic and terror.  And at long last when I have laid you to waste your faint heart will groan and I will incline My ear to you.  And beyond all comprehension you will come to know a strength you could not have imagined.  You will know a peace that surpasses understanding.  You will drink of Me and not grow faint.  You will soar on wings like eagles.”  These used to be just pretty words.  Words I believed, but pretty little words you pat on the head and paint in some scrolly font and frame on the bathroom wall.

How many times have I in desperation, with tears said to Allistaire’s various doctors, “but I don’t know how to let her go.  I don’t know how to take her home to die.”  As I sat in the darkened room on the very grimmest of any days in this long fight, I felt rest.  I am not afraid.  Oh, I am radically sad, to my very core, but fear no longer saturates, suffocates.  It comes to this, at long last I believe the Lord will actually provide all that I need in the moment – not only to endure but to experience Him turning darkness into light, not because He changes my circumstances, not because He ends my sorrow, but because finally I have tasted of Emmanuel – the truth of “God with me” has sunk yet deeper into my very marrow.  I once read a book as a teenager, Abide In Christ, by Andrew Murray.  I abide in Christ as Christ abides in me.  Sounds so simple yet mystery.  I have come to believe – believe – how small a word, how utterly insufficient – nevertheless, I have come to believe that whatever my need, the Lord will meet me in that moment, in that circumstance, and supply in abundance.

Could I endure being publicly raped?  Could I say yes to Christ knowing if I denied Him they would stop torturing my child?  Could I bow to the blade that would soon decapitate and find joy in that very moment?  Can I know peace and even joy in the midst of incomprehensible sorrow should Allistaire draw her last breath?  I do not claim to know how the grace will come but I trust that God will be faithful to meet me fully in each moment and supply all I need to keep seeking His face – that even in the very darkest days He can make my face radiant.

It was odd to sense such peace in face of the thought of Allistaire’s death on the very threshold of the coming chemo we hoped would turn things around.  In the very span of days that the Lord seemed to remove the last stranglehold of fearing her death, there was hope that there might still be some way through.  The peace was unrelated to the hope of chemo working.  The peace lay coupled with death, yet, like burrowing through dark soil and rock, while you hope one day to come out into the light , you count as victory any forward motion.

It has been 22 days since Allistaire began chemo for this round and 16 days since her first dose of Mylotarg.  Night and day.  You can now hardly tell there is anything off with her eye.  You have to be looking for it to see it.  The bleeding has stopped, her sinuses no longer run, her cheek and eye seem normal in size, her double vision is gone, the pain is completely gone.  All that remains is numbness on the side of her nose and upper lip and an occasional expression with her eye that is not completely normal.  She is happy and full of joy and giddiness.  You would not know she had cancer unless you knew she had cancer.

Today I stood in front of two large computer screens with the radiologist, who took considerable time to explain the images and measurements from yesterday’s brain MRI.  The actual dimensions of both “granulocytic sarcomas,” or chloromas or tumors, have diminished only somewhat.  The larger tumor on the right is at its widest still just over 4cm.  The most impressive impact of the chemo is not best understood by measurements in centimeters but the images – wow – the vast majority of the inside of the tumor shows up black on the image – dead cells.  There is really only a “thin residual enhancing rim of the cellular tumor.”  This is most dramatically seen on the tumor on her right side in the “maxillary sinus,” where it no longer pushes up on the orbit/eye and no longer pushes in on her sinuses.  The radiologist informally said it looks like about 80% of the bulk is gone.  I won’t lie, it was pretty disturbing seeing the images from the September 29th MRI.  Every last bit of space was full of leukemia and it clearly had nowhere to go except into her bones.  Thank you God.  Thank you Mylotarg.

Speaking of Mylotarg, Allistaire and I, along with Solveig who we joyfully had with us over her fall break, had the honor and joy of meeting Dr. Irwin Bernstein.  He is both a lead researcher at Fred Hutchinson Cancer Research Center and Chief of the Division of Hematology/Oncology and Bone Marrow Transplant at Seattle Children’s Hospital.  This is THE guy who invented Mylotarg – okay, it was his lab that created this monoclonal antibody drug conjugate that targets CD33 and then unleashes the cytotoxic power of calicheamicin on leukemia cells!  It was just so incredible getting to sit down with him – this man who for decades has worked on cancer research and whose perseverance, brilliance and team work intersected our lives to literally save Allistaire!  I attempted to fully overwhelm him with my gratitude that he and the other folks in his lab would be spurred on!  Hopefully seeing Allistaire’s sweet face and a gruesome picture of her face pre-Mylotarg gave him encouragement that what he does has real, tangible impact!  Ever wonder why I am such a promoter of Fred Hutch?  This is just one example of why.  So much of what benefits Allistaire as she is treated at Seattle Children’s comes from the incredible science being done at Fred Hutch!

The other thrilling development is that last week I met with Dr. Cooper, Allistaire’s primary oncologist, Dr. Law, her cardiologist and head of the heart failure and transplant team and Dr. Bleakley, our primary bone marrow transplant doctor.  Also present in support were Jeff and Karen on the PAC (Pediatric Advanced Care) team and our social worker, Megan.  While I will hold off in explaining the details, in short, the outcome of the meeting was an agreement to aim toward getting Allistaire to transplant as fast as possible.  With Allistaire’s ejection fraction on her last echo being 45, she has finally reached the threshold for transplant.  There is a lot more to say on this subject but for now, the point is, we are now in a position with Allistaire’s cardiac function to consider transplant!  I can hardly believe she has made it this far.  Dr. Bleakley proposed a very interesting transplant option that I initially wanted to spit right out of my mouth in rejection – however, after more information and consideration, it seems it may be an incredible option for Allistaire.  A number of tests are underway to  determine our options moving forward.  The most immediate question is what chemo(s) to give Allistaire in the coming, and hopefully last, round of chemo before transplant.  While Mylotarg has been extremely successful for Allistaire (at least based on the brain MRI – we still have to see what’s in her marrow in the upcoming biopsy) it has in the past, when given in one large dose, been associated with VOD (Veno Occlusive Disease) during transplant.  Dr. Cooper is exploring chemo options available for Allistaire.

A month ago, two months ago, I just felt flat tired, worn down utterly.  Allistaire’s great response to Mylotarg along with the possibility of a bone marrow transplant in the relatively near future has created traction and, man, just gives you something to aim for instead of feeling like you’re stuck in an never-ending circle.  This week marks one full year since this most recent relapse.  We have lived in this wee hotel-like room at Ron Don for one year.  Had you told me on October 24th 2014, that I would still be living away from home a whole year later, without having even gotten to transplant yet – well, I could never have imagined how I would get through all that has transpired.  The Lord knows what is to come.  Hem me in Lord, behind and before.

We just have so much to be thankful for.  Thank you to the mom and daughter who gave Allistaire the obnoxiously large Frozen balloon and the purple hippo – just because – because you cared though you never met her.  Thank you to Dr. Nixon, the radiologist, who took the time to answer my myriad of questions, thank you to the person who gave me that Trader Joe’s card so I could buy lunch and dinner and dried strawberries that Allistaire likes after her yucky medicines.  Thank you to the unknown person who sent me that Kari Jobe CD – I hit “4” over and over and sing out loud in my car, “I lift my eyes, I lift my eyes.  Maker of the heavens.  Keeper of my heart!!!!”  Thank you to my parents who just keep helping to take care of Allistaire and showing me so much love.  Thank you dear friends who have provided us with airline credit and tickets so Allistaire and I can go home and Solveig can be here with us and Sten can fly out to see us and miss less work than if he drove.  Thank you to my in-laws who help us so much with Solveig.  Thank you to my sweet husband who works hard at his job and keeps things up so well at home – including my ridiculous plant collection, far too populated with ferns.  Thank you to so many of you who have given financially to cancer research.  Thank you, thank you for so many of you who have fallen on your knees before our Lord, who have wept on our behalf.

“Do not look at what you do not have, at what will be loss, rather, be expectant, be on the look out for what I will do, for the bounty I will bring,” the Lord softly declared to me on that gray December morning in 2011.  Oh Father.  You have been faithful, so faithful.  You have become more dear to me than I could have imagined.  You have ravaged me and shocked me at your ways.  Your words have taken on flesh and color where once they were just dry bones.  You, Oh Lord, have been good to me.  How I love you.  I prayed to you on so many first stars in the night sky, “Father, should one day something happen in my life that threatens to cause me to deny you, to leave you, hold me close, do not let me go.”  You have heard my cry.  IMG_1289 IMG_1292 IMG_1294 IMG_1296 IMG_1300 IMG_1312 IMG_1318 IMG_1319 IMG_1322 IMG_1324 IMG_1330 IMG_1356 IMG_1366 IMG_1371 IMG_1377 IMG_1392 IMG_1411 IMG_1432 IMG_1434 IMG_1436 IMG_1442 IMG_1450IMG_1477IMG_1488IMG_1493IMG_1505

Eroding

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IMG_1270IMG_1282To be honest, Allistaire felt anything but strong against cancer on Thursday after being discharged from the hospital.  Nevertheless, it was a glorious day and this was to be our one shot for Allistaire to go to the pumpkin patch.  Minutes before I took this picture she was crying hard because of pain in her face.  Pain where the leukemia is eating away, eroding the bone.  After eating a couple of chips so her stomach wouldn’t be empty, I gave her a dose of oxycodone.   There is now a 3 X 3.8 X 3.6 cm mass of leukemia in her right sinus which is pushing her eye forward, and affecting her sinuses.  Her nose runs constantly now.

“There is expansion and bony erosion of the right maxillary sinus.  The mass extends into the right orbit resulting in mild mass effect on the right globe and minimal right proptosis.  The mass extends into the right nasal canal replaces the middle and inferior nasal turbinates.  The mass also involves the right ethmoid and right sphenoid sinuses and alveolar ridge.” (Brain MRI report)

There is also a growing mass in her left sinus measuring 2.5 X 2.3 X 1.5 cm.  The cancer is pushing its way into the roots of her molars.

It hurts to look at her.  It’s hard not to have my attention drawn right to that eye.  I wonder what other people see.  I feel some strange inward compulsion to tell everyone who sees her, this is not her.  You are not really seeing my sweet girl – this weak, crying, deformed child is not her.  But this is what childhood cancer looks like.

Originally, Allistaire was going to be discharged from the hospital Wednesday.  Her scans that had been rescheduled for Monday had to be changed to Tuesday because her blood sugar level was too low on Monday to make anesthesia safe and the docs couldn’t just replete her glucose because then the PET scan wouldn’t work.  So once Monday’s scans were cancelled we disconnected her NG tube from suction and amazingly 21 hours later she still hadn’t thrown up – this despite drinking a full cup of apple juice in relative short time to get her blood sugar level up Tuesday morning just in time for the cut off for the PET scan and anesthesia.  Thankfully all went well with the scans and the anesthesiologist said she did great.  So just before she woke up, the nurse removed the NG tube from Allistaire.  She was quite excited and proud when she woke up to find the tubie gone.  I was hopeful that with scans done and the tube gone we could get out of the hospital

Sadly, Allistaire’s potassium has been very low for over a week, so discharge was delayed.  The theory is that with all of Allistaire’s stomach contents being suctioned out, her electrolytes have gotten off their normal levels.  Low potassium is dangerous because it can cause arrhythmias in her heart.  So it would seem like the best course of action would be to give her a potassium supplement to replete her levels.  However, Dr. Rosenberg, the attending doc, feared Allistaire might either have or was going to have tumor lysis.  Tumor lysis is the breaking up/death of cancer cells in which the contents of the cells go into the blood stream and eventually have to be processed by the kidneys.  Extensive tumor lysis can be too much for the kidneys to handle and can actually cause acute or even permanent kidney failure.  This is what happened to Allistaire the last time she took the chemo, Mylotarg.  Cancer cells can lys as part of their normal life cycle or because of being destroyed by chemo.

Dr. Rosenberg originally suspected tumor lysis because Allistaire’s uric acid level jumped up.  I questioned this given that Allistaire had ceased taking Allipurinol, which removes uric acid, due to her ileus. Apparently, however, under normal circumstances, the body doesn’t produce uric acid, though Allistaire’s must because she has required long-term use of Allipurinol.  In order to quickly remove uric acid, Allistaire was given one dose of IV rasburicase (which turns out to be about $7,000 a dose).   Because tumor lysis can also cause a dangerous jump up in potassium, Dr. Rosenberg wanted to be conservative and only minimally replete her levels.  For this reason, a low dose of potassium was added to her fluids which helped keep her level up just enough to mitigate the risk to her heart.  However, her level remains too low for her to restart her Digoxin and Lasix at this point.

Allistaire’s face has been getting progressively worse, even in the course of days.  The side of her face along her nose is now numb presumably from a nerve being effected by the leukemia.  She looks like she’s been beaten.  The whole right side of her face is strained and bulging from the relentless march of cancer and its apparent impact on the draining of her sinuses.  There is something so wretched about it being in her face.  It feels like she’s being stolen away.  I look to her left eye to see the Allistaire I know, the one I know is in there, shrouded by this struggle.  She’s had pain before, pain her legs, arms, arm pit – so many places these chloromas have showed up – twenty-nine different tumors or “myeloid sarcomas” as her MRI refers to them.  But the face?!  Not her face Lord!  Please spare her pain and deformity there.

I am holding out for Monday.  Monday will be her first dose of Mylotarg.  Today is day 4 out of 5 for the chemo Decitabine which will be followed by doses of Mylotarg on days 6, 9 and 12.  For Decitabine we go to clinic but Monday she will be readmitted to the hospital in anticipation of the much hoped for, yet dangerous, tumor lysis.  Dr.  Cooper is strategizing how to best prepare her, knowing that due to the limitations of her heart, he cannot simply flood her with fluids to wash out the cancer cell guts we want to break open and spill out into her blood stream.  In coordination with cardiology, she will get what fluids she can and he is planning to give her another dose of Rasburicase to completely wipe out the uric acid.  However, the phosphorus and potassium can also rise to dangerous levels.  Sevelamer can be used to bind-up the phosphorus.  She will remain in the hospital at least through Thursday when she gets the second dose of Mylotarg on day 9.  Should she have any fevers, she would need to stay in the hospital for at least 48 hours.  Around day 21 she may have another brain MRI with the intention of determining what cancer is left in her face and planning radiation for what remains.  Our very dear Dr. Ralph Ermoian is the radiology oncologist who is responsible for determining if and when radiation is an option, what are the risks and benefits and what type of radiation will be best given the location.  He is an exceptionally kind man and I feel blessed to have him be a part of Allistaire’s care.

On another note, in case you haven’t read “The Emperor of All Maladies,” I will yet again highly recommend it.  Something I found so fascinating as I read through the history of cancer was the role of “serendipity” in the progress and advancement of the understanding of cancer and its treatment.  The author used this word on a number of occasions to account for circumstances in which unexplained events and even mishaps resulted in progress.  Whenever I would read of “serendipity,” my face would light up with a smile.  Am I just looking to give God credit where it was really just happenstance, chance?  Yes.  Yes I am.  Because I don’t believe in chance.  I believe in a God who orchestrates – down to the details.  I believe in a God who works through circumstances to accomplish His will.  Please be praying for “serendipity.”  AML experts from around the country will be meeting next week as part of the Children’s Oncology Group.  As well, my friend Julie Guillot, whose son Zach died of AML, will be in New York meeting with the CEO of the Leukemia and Lymphoma Society to challenge them to substantially increase their financial support of research for pediatric AML in their “Beat AML” campaign.  Collaboration of doctors, researchers, funding organizations and parents of kids with AML is imperative to drive us closer and quicker to lasting cures and less toxic treatment options.  There really is excitement in the air.

I didn’t realize it until I was saying it, but I told Dr. Cooper the other day, “We parents are your biggest advocates and promoters.  We are the biggest believers in cancer research.  We are the keepers of the stories and faces that can turn people’s hearts to give to cancer research.  You can’t expect us, of all people, to give up hope, to say we are done fighting, to raise the white flag.  We CANNOT.”  The world of cancer treatment is on the move due to the accomplishments of cancer research.  Just around the corner, yet out of sight, might be the thing that will provide Allistaire’s next open door.

Today such a thing is hard to imagine.  Today there were blasts (cancer cells) in her peripheral blood.  She wants only to sleep.  When she is awake she tenderly holds her hand to her right cheek and cries, saying “ouchie” over and over and over.  She doesn’t want to eat because it hurts to chew.  I will turn to look at her and again see bloody snot running from her nose.  She is miserable.  The last few days have been the first time I can imagine ever saying yes to hospice.  If it were not for the hope of Mylotarg, the hope of something that would work…if this cancer was left to progress…it’s nauseating.  It is a magnificent fall sunny day.  Families are headed to the pumpkin patch while my child languishes in a dark room, moaning in her sleep.  It hurts.  It hurts so bad.

I want to sincerely thank Keith & Janet Stocker of Stocker Farms for their compassionate and generous hearts that have chosen to give the proceeds of this year’s Pumpkin Patch to Strong Against Cancer which is a collaboration of doctors, nurses, researchers, hospitals, companies and people like you who are supporting the medical breakthrough of using immunotherapy to treat cancer – much of which is being developed at Seattle Children’s Ben Towne Center for Childhood Cancer Research.
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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