Tag Archives: Acute Myeloid Leukeamia

Long Shot

Standard

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

Standard

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

 

Wednesday…come and gone

Standard

IMG_0340Maple frosting flakes off my scone onto the table top.  I pick up each little tidbit, placing its happy sweetness in my mouth, the sun reflecting in the warm gold of the table’s wood grain.  Even as my fingers grasp the delicate skin of sugar my mind contorts asking if it’s really a good idea to just pick something up off of a table and put it in my mouth, I mean you do realize you’re putting whatever is on that table straight into your mouth.  You don’t know what’s on that table.  You’re flirting with danger.  That’s not a good idea for Allistaire, you could get sick.  In defiance or fatigue I eat the frosting, licking my fingers.  Maybe I fixate on the warmth of my latte and this maple pecan scone because I am procrastinating setting my fingers to this keyboard.  Maybe I eat sweet decadence and feel the satisfying warmth of coffee down my throat because it feels like caring for myself, feels like the tender bandaging of wounds, of soft humming over tears.

The sun flickers through the heart-shaped leaves of the Katsura tree outside the window.  Why when I had a bit of time this afternoon after my meeting, did I head into the heart of the city and pay for parking, all to go into Anthropologie?  Am I materialistic?  Yes, yes I am and I wrestle it.  But too, Anthropologie is a feast for the eyes, groupings of color and pattern, of plant life, wood and ceramic.  There is a restfulness and cheeriness too to that beauty.  It is the closest thing to walking into my house.  Oh how I just long, long, with aching yearning to be home, to dwell in a place that is my own, that feels safe, that is familiar, that is of my own making, that is not intruded upon, that is not dictated by others.  I long for ordinary common life of grocery shopping and making dinners in anticipation of seeing Sten driving down the driveway, coming home, calling in the girls from the adventures in the yard, of looking out my kitchen window at the Spanish Peaks, of cows grazing in the meadow below, of aspen leaves flickering in the sunlight of June afternoon.  Rare is the occasion that I allow myself to even conjure these images, the tears just flow, the sorrow lancing out of me leaving me even more worn.  So I go to Anthropologie walking in the midst of beauty of someone else’s expression of creativity, trying somehow to satisfy that craving to create, to put my hand to craft, that desire that has no outlet.

I circle my computer, giving it wide berth.  It sits silent in my bag but demands that I attend to this blog, this accounting of Allistaire’s flesh, of my heart, of this ragged road I trudge, my feet tripping over stones, fatigue weighing down my legs, pressing my face flat.  Sometimes I want to yell back, “What have I to say?  What?!”  For when I sit to write, really I am calling out again, not just at night as tears slip hot down my cheeks, not just during the day as I plead for patience, for wisdom, for grace with Allistaire as I battle her over food, over taking meds, I am calling out to the Lord.  What do you have to say oh God?  What answer do you give to my weeping, my raging, my flat silence, the groaning of my spirit, the trembling of self exhausted?  I need more Lord!  I need new!  And sometimes it just seems like silence and I yell all the more and I cry out, do you hear me?!!!  And I question if He’s really there.  And I consider whether or not all my beliefs amount to nothing more that wild speech and desperate absurd hoping.  This query ever turns to smile in the midst of my tears.  Look at the beetle in all its wild extravagance of color, pattern and fanciful design.  Does not the beetle reflect in Technicolor the glory of the Lord?  The feather, the leaf, the shell, the flower, the seed…oh do they not all answer back with endless hallelujah that the Lord IS GOD?!!!!

So I yield, I bow, No, I fall flat before Him again.  I tell Him, I worship You, I really do fall down in adoration of You, because Your beauty…it just stops me in my tracks, it stuns me, it shuts my mouth and I cry because You are too much, too gorgeous, too resplendent.  But God, but God, do you see me?  Do you see me here, with my face on the ground, my heart tearing from sorrow.  Do you not see how broken I am, how spent, how undone, how torn and shattered, how desperately weary?  What do You have to say to me?  Be not only a majestic God, far off, above with eternal plans.  Oh Lord, my sweet God, hear my cry, come down, come down low, come down to this dirty ground with me, meet me in my desolation.  Can I ask such a thing of God?  God of creation?  God of eternity?  The Ancient of Days?  The first and the last, the beginning and end, the alpha and the omega?  But I do, I do!  Come Lord I plead, incline Your ear to me, bend low and look into my fearful eyes.  Oh Lord I need to hear your voice, I need to see your face, I am faint and need to hear your voice.  Don’t I love you as much for your condescension, for your coming down as for you greatness, you vastness and infinitude incomprehensible to me?  Perhaps more, perhaps more.  Perhaps it is that You, God of the Universe, creator of all things, sustainer of the universe, You who holds the elements together, don’t I love you most that such a God as You would see me, this vapor, this flower that fades, that you would love me, that you would care for me, isn’t this what makes my heart sing of your name, because of your tender love, your gentle hand.  Oh Father how I need you.

But I tell You how You must show up.  Don’t You see my sorrow?  Don’t You see this expanse of eight long months fighting this relentless battle, separated from Sten, from Solveig, from home, from family and friends?  This battle doesn’t let up and I need more, you see Lord!  And I despise what feels like silence and I do not want to accept that what feels like a slow smile on Your face.  My 21st Century Western-American self wants the next version.  I want the upgrade.  I need the upgrade.  Yeah, that was good Lord but now I need more!  Thanks for that old comfort, that admonishment of long gone days but I’m looking for a new word, to hear your voice provide me something that meets me now!  Silence.  Silence that feels like abandonment.  Silence that feels cold and uncaring.  Silence.

He speaks, speaks in His silence.  His silence tells me, my child, I have already given you all that you need.  I have already provided for you in abundance.  “Therefore, do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own.”  Well thanks a lot for that Lord.  What good is that old trite, worn out saying?  How is that going to help me here, now?  “Eat the manna.”  Hmmmm.  Yeah, yeah, yeah.  Same ole same ole.

But He’s right.  I can pass over those old commands, those words as familiar as the curve of my nose.  So common they’re hardly visible.  I can disregard His truths because I’ve heard them before but I am fool to do so.  The Lord is telling me, I have already given you instruction on how to live these brutal days.  When I scoff and belittle His words, I lose.  I’m left floundering.  Panting and worn out.  Brittle.  Exhausted.  I weary of who I am.  Where is the water to satisfy, to cause flourishing?  I want to be the tree planted by streams of water, bearing fruit in season, even in wilderness.  Why deprive myself?  Why leave the path of the Lord?  Because it has become ordinary?  Because I weary of perseverance?  He draws me back.  He woos.  Entreating me, inviting me to once again rest, rest.  Will I worry about tomorrow?  Or will I worship Him as the God He is – will I entrust all my days to Him.  Oh my flesh flails and rages, wild with the desire for control, to be the one who decides, because I only see my tiny finite view and I bellow with cries for what I want.  A child in a tantrum.  The Lord asks me to look up, to lift my eyes, to take His hand and rest, allow Him to lead.  Will I consent to the simplicity of living this day, this hour, this very moment to its fullest?  My weak flesh stomps its foot and declares, “But I’m just tired of having to do that.  I want to be done with this hard stuff.  I’m ready to satiate my desires.  I want the good life now, here.”  Do I really believe what I say I believe?  Is this life what the Lord says is true or is it what my flesh proclaims is most important, significant, essential?

I shake my head, clamp my eyes and open again.  Baffled, I think, shouldn’t I be fine with all this by now?  Shouldn’t this be normal?  Shouldn’t I have figured out how to live this life after so long a road?  I circle back, wandering in weary heart from the Lord and then I circle back.  Over and over again, I return to Him.

It was a spectacular sunny Saturday morning.  Allistaire, with glee on her face, climbed the stairs and sped down the slide over and over.  The air was alive, bright, crisp blue skies.  We have to go Sweets, I tell her, we have to go now.  Her shoulders slump and her smile turns downward, feet grazing the ground.  I try to make the best of it but inside I grumble that we have to leave this lovely life, this world on the outside, and go sit in the hospital for hours to get a blood transfusion.  I sit in the darkened little clinic room scanning Facebook when I come upon a post about a 14-year-old girl, Ahmie, whose mom is praying for her quick and quiet death as tumors fill her body.  Awareness floods my body, heat, suffocating.  This girl has cancer, she’s been being treated here at Seattle Children’s and she is dying.  Likely today she will die and her mom will never hear her voice again nor see bright joy in her eyes.  I turn away from Allistaire to hide the tears that overwhelm me.  Hot, tight, hard to catch my breath.  And I scramble, where is that verse, where is it?  I must read it now.  What does it say exactly?  All I can think is “LORD GOD!  Do you see this?  Do you see what’s happening here?”  My flesh fails, it groans, it groans.  All I can think is, “The whole creation groans,” waiting for the Lord to return, waiting for the redemption of all things.  And I have to be thankful that my girl is merely lying on a hospital bed on a beautiful Saturday getting blood.  Things could be so different.  What an agonizing prayer that mother is praying.  What a horrid thing to have to ask the Lord for.

I find the verse.  I read the verses just before and after, and then, well I have to read that whole chapter.  Romans 8.  Wow.  I sit stunned.  I’ve read it before, so many times before, but wow, wow.   The little boat of our life had drifted and Romans 8 was like a great tether, binding us back into His truth, connecting all the maddening details of our days, lassoing, binding, weaving ourselves and our lives into the magnificent abundance of who HE is and what He proclaims this life to be about.  I circle back.  I’m invited to rest.  He  extends His arm, His hand and asks me to trust Him, that He is in control, in a glorious way that is beyond my imagining.  His finger points, directing my gaze to the manna, the sustenance, the nutrients of this day, this hour, this moment.  He reminds me that I am not alone, though I feel my whole world in a tenuous shatter, a terrifying vulnerability of completely unraveling.  I am bound into Him, by Christ, by His Spirit.  So do not mistake the simplicity, the familiarity of His instruction as something common place, as weakness, as insufficient, as elementary and unsophisticated.  Romans 8.  Wow.  If I had one piece of paper to read the rest of my life it might be that chapter.

As I write, Allistaire’s eyelids flutter, and there is a distance in her gaze as she goes under, as her consciousness wanes.  I laid her down on that narrow bed, the one that will slide into that great whirring circle of the mysterious machine, the one that will produce an image with brightness where there is increased metabolic activity, cancer.  Then a CT image will be overlapped to reveal any masses present, a complete picture of her disease outside of her marrow.  Still sedated, they’ll wheel her down the hall where Dahlia, the nurse practitioner, will plunge the great needle into  her right hip once again, for the 21st time, to pull back a sample of her marrow.  That wee vial will then make its way to the pathologist who will peer down at cells smeared on a slide, looking for evidence of flesh gone awry, of a creation broken, of cells groaning for redemption.  The pathologist at Fred Hutch will then send more cells from the sample, joined to radioactive isotopes, speeding past a laser – each struck with light causing an electron to be disrupted, its fall documented by a wave-length of light.  A scatter plot forms and zooms in the search for even the most remote evidence of leukemia.  By the end of today I should know the results of the PET/CT, tomorrow will yield morphology results and either by the end of Thursday or Friday we will know results from Flow Cytometry.

I feel chased by two wild hounds, snarling, rabid.  I grip Allistaire’s hand and we keep running, running, trying to outrun their ferocious intent to take her down.  Cancer on one side and heart failure on the other.  Her BNP was rising, all the way to 820 last Saturday and her ejection fraction was dropping, down to 26 a week and a half ago.  I knew this bone marrow and PET/CT would soon reveal the state of her disease and decisions would need to be made.  What would our options be?  Was her heart starting to slip backwards?  In April her ejection fraction was 38 and her BNP got as low as 231 (0-99 is the normal range).  Her ANC last week was down to 54.  What would her marrow do, how would it recover?  Her cells for the WT1 trial will be ready as early as July 22nd.  More chemo?  If there’s anything more than 1% cancer in her marrow, the modified t-cells are unlikely to succeed at stopping the progression of her disease.  What then?  More chemo?  Well, it would need to be more hard-core than Azacitidine if Aza hasn’t kept it at bay.  But what, what chemo can her weak heart handle?  Even if there is a chemo that is not directly hard on her heart, a more intense chemo will suppress her blood counts longer, more severely, leaving the door wide for infection, for a sweeping torrent that could once again overwhelm her heart, this time for good, no turning back.  But what option have we?  If there is much disease at all, we must do something!  We must take the risk.  Because if we don’t, we know the outcome.  We know the outcome.  We find ourselves stepping closer and closer to an edge.  I think of Ahmie and her mom’s agonizing prayer.  I shudder.  I pray.  I call out to the Lord.  But you see, He has not promised to save her. He has not promised some number of years in this life that we think we have a right to – there is no allotment promised.  I shudder.  I pray.  I pray.

Do not worry about tomorrow.  Trust me for tomorrow.  I will provide for all your needs.  Eat the manna before you.  Love her today.  Live your today to the fullest.  Live into what I proclaim this life to be about. Because it is not about granite countertops and painting the house a color you like.  It is not about traveling to that amazing country.  It is not about finally losing that awful belly fat that wiggles like a jellyfish.  It is not about having a job and a pay check that makes me feel good about myself and gets me what I want.  It is not about my comfort.  It is not about the hundred thousand things my flesh says I need and the world clammers to echo back endlessly.  Romans 8.  Wow.  The way of the Lord is so, so contrary to how I want to live my life.  His words are hard words.  I want to turn from them because they are hard, hard.  Oh Lord, don’t you see I’m weary?  Can’t you just let up for a while?  Can’t you just let me live my own life for a little while?  Can’t I just hunker down here and indulge?  Lift your eyes.  Lift your eyes!

So I lift my eyes.  I look for the manna.  I seek to love today.  I ask the Lord to help me walk in His Spirit today.  I yield tomorrow to Him.  I call my friend, my older sister in Christ.  I confess my sin.  I ask for the Lord’s convicting.  I ask Him to transform my heart, to love like He says love is.  Forgive.  Don’t keep a record of wrongs.  Don’t let the sun go down on my anger.  Believe the best.  I seek times and ways to worship, to fellowship, to not make the mistake of trying to walk this hard road alone, without the surrounding of His people.  I keep my eyes and heart alert.  I’ve dreamt of Jens.  Both times he gives me no answers.  He is just alive.  Alive.  Jens is alive.  He smiles at me in my dreams, his big sweet closed mouthed Jensie smile.  And I smile.  Jens is alive.  Though my flesh, it be destroyed, yet with my eyes, I shall see God.  I shall see God.  Oh Father, Father, hold my fainting heart.  My heart, my flesh it groans for You, for Your return, for Your redemption of all these woes.

It’s a few hours later.  Allistaire was still recovering in the PACU from sedation from her bone marrow and PET/CT.  It was minutes before 5pm.  I eventually got through to Dr. Cooper.  Ugh.  So wretched.  Six or seven spots of cancer bright on the PET scan – too small yet to show up on CT, but there, there and some in awful places you just can’t radiate – her spine, her sternum, her left humorous, her pelvis.  I couldn’t keep track of them all, the words blurring in my ears, my heart growing faint, heat up my neck, my legs weak.  “Can I see the scan?  I need to see the image.”  Sweet Olwen, the PACU nurse, wheeled us upstairs to the Hem/Onc clinic, Allistaire still too wobbly to walk and I clutching her in my arms, cheek against the extravagant softness of her fine beautiful hair, destined to be gorgeous and curly by the looks of how it’s coming back in.  Oh God.  Oh God.  Have mercy.  An out-of-body experience.  Looking on from afar.  So this is how this goes.  This is how kids die from cancer.  This is how the story dwindles and fades and wears thin until there’s nothing left.  “But I don’t know how to be done,” I quietly wail to Dr. Cooper, the tears in his eyes because he too has a five-year old child.  Dr. Gardner thinks it would be crazy to give her high-dose chemo with her heart so weak, so bound to fail if an infection comes.  So this is how you die of cancer.  I remember asking Lysen, our nurse, long ago, over three years ago, “explain to me, I don’t understand, how exactly does cancer kill you?  What actually happens?”  I watch our path from afar and I fear I know where it is headed and my whole flesh just simply falls, fails, quietly crashes.  She is too alive. Too alive.  How?  How do you stop the fight?  We’re not there yet, I know.  We need the bone marrow results.  We need to know how much is in there before we really no what options she has.  Go down in flames?  Go quietly?  What a brutal wretched quandary.  I despise, revile it all!  Oh God!  Oh God!

Incline your ear to me Oh Lord, hear the faint beating of my heart, my haggard breaths, the silent heaving of my chest.  Be merciful.  Of Father, Father, come down low, meet me here in this dark hole.  Hold my hand, bind me to you.  I put my hope in your holding of tomorrow.  Show me the manna in this day, direct my vision to your sustaining.  Hear my cry oh Lord.  Be gracious.  See our broken family, each of us ravaged in this trial.  Come Lord, come down to us.

Romans 8 New International Version (NIV)

Life Through the Spirit
8 Therefore, there is now no condemnation for those who are in Christ Jesus, 2 because through Christ Jesus the law of the Spirit who gives life has set you[a] free from the law of sin and death. 3 For what the law was powerless to do because it was weakened by the flesh,[b] God did by sending his own Son in the likeness of sinful flesh to be a sin offering.[c] And so he condemned sin in the flesh, 4 in order that the righteous requirement of the law might be fully met in us, who do not live according to the flesh but according to the Spirit.

5 Those who live according to the flesh have their minds set on what the flesh desires; but those who live in accordance with the Spirit have their minds set on what the Spirit desires. 6 The mind governed by the flesh is death, but the mind governed by the Spirit is life and peace. 7 The mind governed by the flesh is hostile to God; it does not submit to God’s law, nor can it do so. 8 Those who are in the realm of the flesh cannot please God.

9 You, however, are not in the realm of the flesh but are in the realm of the Spirit, if indeed the Spirit of God lives in you. And if anyone does not have the Spirit of Christ, they do not belong to Christ. 10 But if Christ is in you, then even though your body is subject to death because of sin, the Spirit gives life[d] because of righteousness. 11 And if the Spirit of him who raised Jesus from the dead is living in you, he who raised Christ from the dead will also give life to your mortal bodies because of[e] his Spirit who lives in you.

12 Therefore, brothers and sisters, we have an obligation—but it is not to the flesh, to live according to it. 13 For if you live according to the flesh, you will die; but if by the Spirit you put to death the misdeeds of the body, you will live.

14 For those who are led by the Spirit of God are the children of God. 15 The Spirit you received does not make you slaves, so that you live in fear again; rather, the Spirit you received brought about your adoption to sonship.[f] And by him we cry, “Abba,[g] Father.” 16 The Spirit himself testifies with our spirit that we are God’s children. 17 Now if we are children, then we are heirs—heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.

Present Suffering and Future Glory
18 I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. 19 For the creation waits in eager expectation for the children of God to be revealed. 20 For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope 21 that[h] the creation itself will be liberated from its bondage to decay and brought into the freedom and glory of the children of God.

22 We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. 23 Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption to sonship, the redemption of our bodies. 24 For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? 25 But if we hope for what we do not yet have, we wait for it patiently.

26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. 27 And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.

28 And we know that in all things God works for the good of those who love him, who[i] have been called according to his purpose. 29 For those God foreknew he also predestined to be conformed to the image of his Son, that he might be the firstborn among many brothers and sisters. 30 And those he predestined, he also called; those he called, he also justified; those he justified, he also glorified.

More Than Conquerors
31 What, then, shall we say in response to these things? If God is for us, who can be against us? 32 He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? 33 Who will bring any charge against those whom God has chosen? It is God who justifies. 34 Who then is the one who condemns? No one. Christ Jesus who died—more than that, who was raised to life—is at the right hand of God and is also interceding for us. 35 Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? 36 As it is written:

“For your sake we face death all day long;
we are considered as sheep to be slaughtered.”[j]
37 No, in all these things we are more than conquerors through him who loved us. 38 For I am convinced that neither death nor life, neither angels nor demons,[k] neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

IMG_0068 IMG_0081 IMG_0095 IMG_0098 IMG_0108 IMG_0129 IMG_0197 IMG_0207 IMG_0142 IMG_0147 IMG_0148 IMG_0149 IMG_0150 IMG_0165 IMG_0219 IMG_0222 IMG_0182 IMG_0292 IMG_0308 IMG_0316 IMG_0320 IMG_0322 IMG_0324 IMG_0330 IMG_0370 IMG_0377

Consent

Standard

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

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

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

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

Jail Break

Standard

IMG_3589I used to think I was safe, that wild animals, the beasts, the possibility of having my flesh torn off of bones, lay up there, out there, far off in dark mountainous woods.  I thought it would be easy to simply steer clear of such terrors.  As though somehow my own willing of my footsteps could keep me from entering their realm, that by hope, optimism, some silly assumption of impenetrability, it would not be so hard to keep those ravages at bay.  I walked in a sunlit land, blithely believing, perhaps not even believing but never even thinking that they might tear down the hillside at terrifying speeds, absolutely bent on destruction.  They do not see a heart full of hopes, of dreams, of ideas, of lists of yearnings, eyes bright.  Their horrible feet carry them, saliva flinging back behind as their daggers flash, crazed eyes.

Flood waters tearing homes in half, separating husband and wife with children.  Father of Solveig’s classmate, life cut short from heart attack.  Jens on a mountainside.  Nine year old girls sold into slavery by Isis.  Kassidae home from yet another T-cell trial that utterly failed to stop her cancer.

What is it like to have no more options?  How can I fathom a journey where suddenly the road simply ends.  No destination reached, just a faint trail blending into nothing, melding into the landscape.  And then what?  And then what?  Where does one go from there?

I see a small child standing alone in an open space.  Nothing in their hands.  No clothes.  No defense.  Utterly vulnerable.  I stand and watch, unable to move, unable to raise my hand to stop what I know will come, what is coming.

The child shivers, confusion in their eyes.  And then you sense it, before even sound reaches your ears.  Some sort of terrible rushing, some silent invisible foe rushing through the forest.  At last it breaks through the trees, snarling, feet hardly touching the ground as it bolts for your child, savage mouth wide.  And do you turn away?  Can you stand to watch the beast tear into your child’s flesh?  Dare you know the moment their life is extinguished?  How much will be ripped and torn before their eyes go limp and lifeless?

I heard these words in a beautiful song, a song meant to comfort, a lullaby.

“Quiet your heart
It’s just a dream
Go back to sleep

I’ll be right here
I’ll stay awake as long as you need me
To slay all the dragons
And keep out the monsters
I’m watching over you

My love is a light
Driving away all of your fear
So don’t be afraid
Remember I made a promise to keep you safe

You’ll have your own battles to fight
When you are older
You’ll find yourself frozen inside
But always remember

If you feel alone
Facing the giants
And you don’t know
What to do

My love is a light
Driving away all of your fear
So don’t be afraid
Remember I made a promise to keep you safe”

My heart was breaking as I listened to these words.  Hot silent tears slid down as I drove, facing forward, intent on the task of getting there.  “You’ll have your own battles to fight when you’re older.”  But no, no, Allistaire did not get to be older before she had her own battles to fight.  She was just 21 months old when her battle against this ravaging beast first came, intent on taking her life.

“Mommy, I like that part, ‘you feel alone, facing the giants, and you don’t know what to do.”  Her soft sweet voice came to me from the back seat.  Of all the words in all the songs, these are the one’s she speaks out loud, repeats back to me, the words that most resonated with her little girl heart.

You think, unconsciously believe, that as a parent you can protect your child, that somehow, by force of will you can magically keep them from harm.  Surely there is nothing more core to being a parent, to being a mother, than protecting the life of your child.

But my love, oh my love, so fierce, stuffed full with all my might and zeal, my hope…it is powerless to protect against some enemies.  I never made that promise to keep her safe, I just assumed it would be true.  Of course she will be safe.  Of course I can wrap her up in a hug and overcome any giant.

No.  There may come a time where there are no options left and I will hear the rushing of wind through branches as that beast comes tearing through the forest, breaks out into the opening and sinks its wretched brutal teeth into the one I love, this time sparing nothing.  I may be left with my heart bleeding out in the open space, tattered, wounded, ravaged child in my lap, never again to see her bright eyes, never again to hear the most beloved sound on the whole earth, her laugh, her voice full of wonder.

But I know this.  She will not stand alone.  If such a time comes, I will stand with her, hand gripped in mine and I will face that beast with her.  I will not turn away and I will not leave her, and that may be all that I can do.  My eyes will weep until my own flesh is laid to rest.

To Shannon, to Kate, to Susan, to Becca, to Rachel, to Julie, to Beth, to Devon, to you many more mothers who have walked this road, who stood with your hand gripping your child’s as that beast came to devour, my heart weeps with yours and oh how I desperately long for a better day.

For those of you who know that Allistaire was discharged from the hospital almost two weeks ago, these words must come as a surprise.  What you see on the surface is so far from the full story. People constantly comment, “She looks great!”  They ask, “How is she doing?”  How do I answer that question?  On Monday at the playground, after having climbed up the slide twice in a row, Allistaire suddenly said she didn’t feel well, she was panicked and in pain but couldn’t explain what was really happening.  There was terror in her eyes.  I cradled her and hoped she would calm down. Maybe she just overexerted herself a little.  She cried out in anguish, “Mommy,” over and over, yet I could not understand the source of her pain or her fear.  I asked my five-year old daughter, “Do I need to take you to the hospital?” as though she could answer this question.  Was she overreacting?  What was she feeling?  She threw up in the bathroom.  Well, she was on day 6 of chemo and this was the first time she threw up, so really not concerning in itself.  Of course nausea can be a sign of heart failure too. I scan through all I know in my head, assessing her energy, her sleep patterns, her appetite, food consumption.  Could it be her heart?  She continued to freak out after throwing up and we left the bathroom.  “Mommy, can I feel the sand?”  I took off her sandals and gently sat her feet down in the sand at Golden Gardens.  Immediately she calmed.  Immediately she was fine.  What was real?  What is true?  How much of that was based on something of significance?  How much is her just working herself up?  I dreaded having to relay this incident to the cardiologists.  It’s a lovely day at the park, but just below the surface are constant swirling realities that threaten to steal it all away.

In the first days of being out of the hospital, Allistaire and I gorged on our sudden freedom, on sunlight and bird song and starlight and bright moon, on playgrounds and sleeping without interruption, on hours of daytime without nurses and doctors and hospital food trays.  Solveig and JoMarie arrived last Wednesday evening and my heart swelled with the joy of their laughter and heads clustered together in play.  Everyday playgrounds, picnics and beaches, throwing rocks into water and sun glinting off lapping waves.  Caterpillars on fingers and squealing.  My faced beamed with delight, with wonder at simple ordinary life.  How much more wondrous it is than people realize!

You think that leaving the hospital is some signal of victory, of progress, of normalcy.  And so it may be, often is, though not always.  We left on May 18th, not having accomplished what we came to do.  In some ways the girl who left the hospital was worse off then the girl who came to Seattle back in October.  The great victory was that she successfully weaned off Milrinone.  A huge accomplishment which has made way for a few options, far more than none.  But her heart is far too weak to endure a standard transplant for AML which includes TBI (Total Body Irradiation).  So we left the confines of this hospital after 130 straight days, her only moments outside were the 30 seconds here and there strapped onto an ambulance stretcher as she was transported to and from The University of Washington for radiation.  We went straight to the playground.

For 11 of the past 12 days since she was discharged, Allistaire has been to the hospital for a variety of appointments.  On Tuesday the 19th she finished focal radiation to her left leg where one new chloroma (solid leukemia) showed up on her last PET/CT scan.  On Wednesday she saw Dr. Todd Cooper, her new primary oncologist.  Dr. Gardner is pregnant with twin girls and so we are making the transition to having Dr. Cooper, who is the newly hired head of the leukemia department and an AML expert.  He is the doctor that Dr. Pollard had hoped would come to Seattle Children’s.  He has been tasked with developing a High-Risk Leukemia program for Seattle Children’s.  So when Dr. Gardner asked who I’d like to have as Allistaire’s new primary oncologist, it was a no-brainer to ask for Dr. Cooper, a kind man from Atlanta who is a super smarty pants AML doc.  In our first outpatient visit with him, he relayed that Dr. Pollard had called him about Allistaire to make sure he was up to speed with all the details of her medical history.  I cannot tell you how amazingly cared for I feel here at Seattle Children’s.  We are blessed beyond words by the team that journey’s with us.  After seeing Dr. Cooper, Allistaire began seven days of Azacitadine, the same chemo she got last time.

Prior to leaving the hospital, I met with Dr. Gardner and Dr. Marie Bleakley, the transplant doctor we’ve worked with at several significant points.  It was really great to have them both present for the conversation.  Dr. Gardner began with explaining her reasoning for waiting so long for Allistaire to begin chemo again.  I had grown frightened with the incredible amount of time since her last round of chemo, knowing the immense need to keep her in remission and being aware that she was a month beyond the traditional time of starting a new round.  Dr. Gardner stressed that because Allistaire’s marrow has been so incredibly slow to recover, her greatest immediate risk is that of an infection that one: she wouldn’t have the white blood cell defenses to fight and two: that could overwhelm her heart.  So finally, nine weeks after the beginning of the previous round of Azacitidine, Allistaire would begin another round.  She also stated again that given Allistaire’s heart, TBI, known to have long-term consequences to the heart, was not in her best interest at this time.  Dr. Bleakley went on to describe a “midi-transplant” which has much lower levels of radiation (4 centigray as opposed to 12 in TBI) and heavy-duty myeloablative chemotherapy, and a “mini-transplant” with even lower levels of radiation (2 centigray) and non-myeloablative chemotherapy but high-dose steroids.  I’ll forego going into the details of how each of these work and the pros and cons, but suffice it to say, the mini-transplant is not a good option as it is intended to extend life in the old who cannot endure hard-core conditioning.  It is unlikely to provide a cure and has a lot of potential for GVHD (Graft Versus Host Disease).  So while the “midi-transplant” is an option for Allistaire, with a gleam in her eye, Dr. Bleakley had a different proposal.

I left the room with hope.  With fear yes, always there is fear, we walk ever into black, into unknown.  But with hope, with a bit of upturned grin.  Dr. Bleakley has proposed that Allistaire’s best option is to participate in the WT1 trial.  This is a trial through Fred Hutchinson Cancer Research and uses genetically modified T-cells which have a specially designed receptor to bind to the WT1 protein found on 90% of leukemia patients cancer cells.  Normally a bone marrow test would be done to confirm expression of the WT1 protein in the cancer cells, because if it is not present, the receptor is useless.  However, because Allistaire has not had any detectable disease in her marrow since she relapsed in October, they decided to proceed without this info for now.  At the end of this round of chemo, she will have another bone marrow test performed and if there is disease, they can then test for the WT1 protein.

So far 17 people have participated in this trial.  Of the people who were in remission going into a bone marrow transplant and remained in remission leading up to getting the modified T-cells, 100% have remained in remission for over a year that they have been followed so far, this in light of a normally high relapse rate post-transplant.  There are two people who relapsed after transplant and then got back into remission and then received the modified T-cells.  This is the arm of the protocol that Allistaire would fall into.  I believe I was told these people are also remaining in remission. The remaining group relapsed after transplant and did not get back into remission and despite having the T-cells are not doing well or have already died.  It seems the T-cells work best when there is little to no detectable disease.  We will know the state of Allistaire’s disease after we get results from her next set of tests around June 16th.  How I pray she remains in remission, but she has been receiving very mild chemo and has gone great lengths of time with little to no defense.

What makes Allistaire unique in this trial, is that, should she be able to get these TCR T-cells, she will be the very first child to do so.  I will have to ask again if this is being done anywhere else, but she is certainly the first child ever to have this sort of therapy here (Seattle Children’s/Fred Hutch).  There are many kids with ALL (Acute Lymphoblastic Leukemia) who have by now received modified T-cell therapy.  But the targets are quite different.  In Lymphoblastic leukemia, the cancer is in the B-cell line and CAR (Chimeric Antigen Receptor) therapy is used to destroy the cancer and in doing so, it forever destroys the patients’ B-cell line, requiring life-long transfusions of Immunoglobulin.  The first child ever to receive this therapy was a little girl named Emma in April 2012 at CHOP (Children’s Hospital of Philadelphia).  She has remained in complete remission since then.  Seattle Children’s Research along with the Ben Towne Foundation has provided this therapy to a growing number of children with great success.  People are coming from around the world for this treatment.  A month ago I met a woman named Solveig from Germany who was here with her son, Nicolas, who was getting CAR-19 T-cell therapy.  Allistaire’s cancer (Acute Myeloid Leukemia) is found on the myeloid line – cells that you cannot forever destroy and rely on transfusions for, cells like red blood cells, platelets and granulocytes.  Thus the scientists have needed to find another way to attack these cells.

The folks at Fred Hutch have been incredible.  I am amazed, honored and humbled by their passionate desire to make a way for Allistaire to participate in this trial.  Through conversations with Dr. Bleakley, Dr. Dan Egan (the principal investigator on the trial) and Dr. Phil Greenberg (the head of the lab who has designed this therapy), it is so abundantly evident that they see Allistaire as an individual and they see her as the child that represents the children who are also in desperate need of this therapy, children who have run out of options, children “destined to die of their disease.”  They have re-written the protocol to accommodate her, to make way for future children.  The original weight requirement was 30kg because of the numerous blood draws required for testing.  They worked it out to reduce the limit to 15kg, Allistaire was 17kg at the time they made this change.  Additionally, because this weight change equals treating much younger patients, they went through a lengthy, involved process to set up approval to give this therapy at Seattle Children’s.  Up to this point, the youngest patients have been in their teens and were treated at The University of Washington where adults are treated.  They have worked hard to make a way through for my girl.

On Sunday evening, May 17th, I was delightfully honored to be invited by Julie Guillot to the Premier Chef’s Dinner, a fundraiser for Fred Hutch.  As I have mentioned before, Julie and her husband, Jeff, lost their son Zach to a complication of his third transplant for AML.  At that time they were helping fund the research that would create T-cells that would give Zach another measure of defense against AML.  When Zach died in February 2014, Julie’s zeal and wild fiery passion to bring an end to AML and better treatment options, only intensified.  When Allistaire relapsed in October 2014, she invited Allistaire and I to a little party for Dr. Greenberg’s lab to celebrate the $1.7 million dollars Julie and Jeff had helped raise for his research thus far.  It was at that time I first met Dr. Greenberg in person and introduced he and his lab staff to Allistaire.  Jeff and Julie were the challenge fundraisers for the fundraiser on May 17, 2015, having pledged to match up to $400,000 of money raised that evening.  In making this commitment, they were given the privilege to direct where the funds would go.  Their whole motivation was to see the immunotherapy through Dr. Greenberg’s lab flourish and accelerate.  By the end of the amazing evening, $1,280,000 was raised to accelerate targeted cellular immunotherapy research at Fred Hutch.   I had the joy of standing up and representing the hopeful first child to benefit from his research.  Dr. Greenberg spoke to me on two different occasions during the evening, each time with multiple hugs initiated by him.  You could see the eager joy and hope in his eyes.  It was a wondrous thing to stand alongside a man who has dedicated several decades of his life to this research, generous donors, a fellow cancer mom who lost her son – for whom this therapy is coming too late, and I, the mom of a child who is desperate now and who needs this treatment immediately.  The full circle was there – scientist, patients, donors.

Doors are opening but still the tension remains high-pitched.  There is the illusion of normalcy, there is light-hearted laughter on the surface, but there is a mighty undercurrent, ever threatening to pull Allistaire down, deep into the suffocating dark.  First financial approval for the trial was required which was confirmed by Blue Cross Blue Shield of Montana this Wednesday.  This allowed the Unrelated Donor Search Committee to initiate their part which is to request Allistaire’s original donor to be contacted and for a request for consent to use remaining donated cells for this trial.  At this point, unlike the CAR t-cell trials, the WT1 trial must use bone marrow transplant donor cells.  While Allistaire is not in a position to get a transplant at this time, she thankfully does have cells stored at Fred Hutch from her original donor from her transplant in June 2013.  Extra cells are stored for two years at no charge and then you have the option to pay to have them stored.  This June 18th, will mark two years.  I pray this woman can be found quickly, quickly and that her heart will be moved again to give, this time solely of her consent.  It feels sort of terrifying to know that Allistaire’s one shot is dependent on a woman on the other side of the world, but then again, she gave once in a much greater way, we so hope she will help make a way through for Allistaire again.  If we can gain her consent, processing of the cells will begin and takes approximately a month and a half.  Speed is of essence.  The T-cell therapy much be coordinated with Allistaire’s chemo schedule.  It is my great hope that there may be a way for Allistaire to get these cells prior to needing to begin another round of chemo.

This therapy could be Allistaire’s cure.  That would be BEYOND AMAZING!!!!  And if not a cure, we pray the T-cells will buy her more time, time for her heart to heal, time for her heart to gain strength to enter the next battle of a second transplant.  What’s so wild to me is that Allistaire would be inpatient for ONE day for this therapy.  ONE DAY!!!!  And this T-cell therapy does not result in the intense cytokine storm response as it does in the CAR T-cell therapy which puts most kids in the ICU for some period of time.  No one in the WT1 trial has had to go to the ICU.  In fact, Dr. Gardner told me that Allistaire would not be able be eligible for the CAR t-cell therapy because of the extreme dangers it can pose.  For the WT1 trial, they would ask her to stick around for a few weeks for some blood draws and observation and then remaining blood tests could be done at home and simply mailed over to Fred Hutch.  It all seems too good to be true.  What a wondrous world it will be when this is the way cancer treatment is conducted.  Can you even imagine?!  I must highly, highly recommend the documentary, “The Emperor of All Maladies,” by Ken Burns!  It is based on the book of the same name which is also extremely fascinating and worth reading.  It is simply thrilling to see how far cancer research and treatment has come and the heightened hope that immunotherapy will change the course of how cancer impacts our lives – for one in every two men and one in every three women who will get cancer at least once in their lives.

I am weary, so utterly weary.  But what choice do we have but to walk on?  And we do.  We walk forward, giving thanks for so much blessing.  Sometimes it feels like there being a way through for her is an utter impossibility, but then I am reminded of how many “impossibilities” have come to pass, how the insurmountable has been overcome.  My yearning for her life is like a burning fever that never lets up.  Every moment is on high-alert, racing through the myriad of questions to try to determine how she is doing, to assess what is going on for her.  There are now so many interwoven layers of medical complexity and reality.  There is cancer, there is heart failure, there are medications (13 different ones every day – 26 doses), there is being deconditioned by months lived in the cramped confines of the hospital.  I see her on the play ground and I watch kids younger than her charge a hill or climb with confidence.  She tires quickly, she is fearful.  Her legs hurt.  Is it cancer on the move?  Is it lack of blood getting to muscles?  Is it simple fatigue brought on my muscles that have not been asked to do much in so, so long?  Is she nauseous?  Is it from chemo?  Is it from the magnesium she must take because her Lasix makes her waste it, magnesium that causes tumultuous abdominal cramping?  All her pain signals are mixed up so that she just finds herself in a frenzy of discomfort, in a frightful maze desperate to get out but with no clear direction.

Leaving the hospital balloons the craving for normal, it makes you think you should be normal, all the standards shift and you see your child not as one among the many other sick kids but among the normal.  At the same moment that I am delighting in the warm day and Allistaire playing in the sand, going back to the lake shore to fill her bucket again, I am aware of the dangers in that sand, in that water.  I’ve put parafilm on the end of her tubies and tucked them tight into her swim suit.  She wears her sun hat and is lathered in sunscreen.  Her medications make her more sensitive to the sun, more likely to burn.  I’d like to avoid skin cancer.  She doesn’t know what to do when the other little girl approaches silently to play with her and share her toys.  She is fearful and defensive.  My heart sighs knowing how little interaction she’s had with other children, how to navigate such situations.  In her cardiology appointment the great nurse, Jason, calls her precocious.  Yes, yes, she seems to be quite articulate for a five-year old.  There are ways that her deficits are glaring and there are odd ways that she has walked so much further in life than the vast majority of five-year olds.  What I know is that I love her dearly, I long to keep her safe, to see her have long life.

I pray to God, I seek to be reminded, imbedded in the truth of His infiniteness.  I ask Him to remember that I am finite.  I ask Christ to pray for me as He prayed for Peter, that my faith would not fail (Luke 22:31-32).  I ask Him to help me to lift my eyes, to take in the long view, to help me in this brutal moment, these series of endless days, in this tedious fight against cancer, in this relentless tumult to see His face throughout all these circumstances.  We go to the playground.  We look for the first stars at night, our necks craning back.  Alllistaire points eagerly at the moon, not framed in the hospital window, but in the vast expanse of the evening sky.  We listen for birds and bend our noses to flowers.  Our feet follow little paths through marsh land and cat tails, spider webs bright in the afternoon sun.  We live, we delight.  We go to the hospital again and again into little rooms with blood pressure cuffs and vials of blood that tell of the world within which eyes cannot see.  We walk forward through this intertwined life, messy, unclear, wondrous, of such enormous precious value.  We give thanks to the Lord and ask for more.IMG_3470 IMG_3483 IMG_3588 IMG_3591 IMG_3597 FullSizeRender-6
IMG_3626 IMG_3636 FullSizeRender-2 FullSizeRender-3 FullSizeRender-4 FullSizeRender-5 FullSizeRender IMG_0003 IMG_0013 IMG_0018 IMG_0021 IMG_0022 IMG_0023 IMG_0024 F7E5F4EF-4C94-4A4F-858B-10F1CE61C502 C7860EE9-0E66-45B9-954A-93ABD4DF8346

Help The Hutch 2015-355-(ZF-8131-68186-1-002) Help The Hutch 2015-486-(ZF-8131-68186-1-001)

Lyrics above are from J.J. Heller’s song, “Keep You Safe.”

Roar

Standard

IMG_3369Often music fills my ears, pushing back, pushing out the distraction of sounds around me, pulling my thoughts inward, attempts at gathering all the scatter into some sort of coalescing.  Today the gray-green waves of the Pacific roar relentlessly.  A sound of static unceasing, pleasing perhaps because of the immensity of its raw power, the deep core knowledge that this is water, this is the essence of the earth expressing itself, that monotony that is staggeringly beautiful, from which you can hardly turn away.  A line of dozens of surfers bob like black buoys waiting for some moment indiscernible to me, waiting to launch into those few seconds of thrill before the white ferocity takes them down.  Eight pelicans, one behind the other, skim the surface, effortlessly, lazily.

The still quiet of my home in Montana knows nothing of this clamor, just shocking liquid quiet punctuated here and there by bird song.  Perhaps in storm the land sings with ocean, clouds fill the valley making their way up the canyon with surprising swiftness, the wind proceeds them, the trees bending from the power and the constant rush of air through millions upon millions of evergreen branches, aspen leaves shuddering, flashing.  There is that thrill, that giddiness to witness such power, wondrous terror that nothing can stop what’s coming.  And so the waves reach for the shore, again and again, a longing never satiated.

I have wondered, would I like to live near the sea?  No, sea sounds too pretty, too small and timid and kind.  This is ocean.  This is a vastness and an infinitude to give the word some beginning of meaning.  This is force unyielding.  There is absolutely no letting up.  Would that sound haggard me?  Would its backdrop to every day and every action invigorate and calm or fatigue, cause restlessness, unsettledness?

This is our life, a pounding raw power that never lets up, is always, ever-present.  Cancer, and now heart failure too, have been the backdrop to every day and every action for nearly three and a half years.  The relentless static ever demanding to be heard threatens to swamp every view.  We dared to plan a trip to San Diego, a chance to finally get away and take a break.  Canceled plans, thwarted hopes, desires cut short – these have marked us.  But there he is, Sten on the beach below the hotel room, black wetsuit and blue board receiving instruction and soon to paddle out into that fierce green fray, lit now like liquid precious stone by sunlight breaking through clouds.  The contrast of breaking waves, white, so strangely satisfying.

Allistaire’s life, ever tenuous, overlays all thoughts, undergirds all visions of future.  All seems well.  You sleep in comfy bed, you eat tasty fish tacos and then there it is, because it has always been there but something causes you to tune into that roar, that relentless pounding of cancer like the wolf threatening to blow your house down.  The barbs of cancer puncture and sorrow seeps into those lacerated places, saturating the tissues.  Now there is another layer, another strata of sorrow, ever-present, silent but pounding, roaring its reality into unnoticed places.  Jens is dead.  We repeat it to ourselves in disbelief.  I saw his body laying there on the table, clothed in plaid flannel and dirty Carhartts, a most common image.  “They didn’t do his hair right,” Jo exclaims through tears, lovingly running her hand through his hair, “he never did it that way.”  A sad smile because Jens really never did do his hair, that’s why it doesn’t look right.  I held his hand and felt the shocking cold of his arm under the shirt.  I told myself, this is Jens, he is dead, he is dead but I could not fathom it, I cannot fathom it, I don’t know how to take it in!  We sit, we walk and there suddenly we are confronted with something that brings Jens rushing to our minds.  We stare at the amazing stretcher from the ambulance, awed by its engineering design and there is Jens.  We walk down the sidewalk and see the “corn hole game” and there is Jens.  We hear Dave Matthews in the restaurant and there is Jens.  Someone mispronounces Sten’s name, I correct and go through the list of the four brothers with the norwegian names and there is Jens.  I send out a group text to give an update on Allistaire and there is Jens.  My husband’s green jewel eyes fill again and again like pools, and there is Jens, Jens.  His sweet brother is gone, gone.  His name pounds through our hearts, punctuating our days endlessly.

I don’t know if I can live with this unceasing roar.  I feel desperate sometimes, wild with the desire to use my wee force to make this all stop, turn around, never come this way again.  We have no choice.  It is unyielding, it is a reaching, a groping that will never be satisfied, not in this life.  We will never again hear Jens’ voice in this life, nor see the green of His eyes, the eager excitement in his story telling, the silly contortions of his face to make us laugh, the gentle tug of pulling Jo into his protective warm chest, the wrestling with how to live out his days – his desire for satisfying work and play.  Oh dear Jensie, I cannot comprehend that you are really never again going to walk through the door.  Surely you are just away, or more likely, I am simply in Seattle with Allistaire and you will visit or I will see you when I get to come home again, you will walk through the door for one of our big family get togethers, arms loaded with tasty food.  You will join the circle of your brothers, beer in hand and I will stand back and take in with swelling satisfaction the joy of our family together, the hope of more little kids.  But I saved all the baby stuff.  I saved it for YOU!  For you and Jo.  I wanted to see those sweet little clothes that encircled the bulgie flesh of my two little girls, on your children.  I couldn’t wait to see what they’d be like.  I have imagined you Jens over and over, holding that new warm bundle of life in your arms in awed amazement, in wonder at what you and Jo had made, Jo next to you looking on, equally rejoicing in a new little life and seeing you as a dad.  For you Jens, were to be such a sweet, sweet dad, full of joy and play.  And it is not to be and what is Jo to do with those bags of clothes, of baby gear I thrust on her?

There now, just to the side, in parallel to the bright thread is now the dark.  Every remembrance is dual, joy and pain.  Jens is dead.  There is now no hoping, no imagining his future.  There is only sadness of what might have been.  Allistaire’s future remains ultimately unknown, though there is already cost, already deep gouges in her flesh that cannot be undone.  On a Wednesday we sat huddled together on the couch at Sten’s parent’s house, Jo and all her family, the Wilsons, and all of Jens’ family, we the Andersons.  We gathered to draw together tales of Jens, bright threads of his life intertwined with ours, sorrow and joy all tumbled together.  I sat on the edge with the phone shoved up against my thigh, ever aware of its presence, that its ring might suddenly clatter into this sacred space, slicing, and telling us what is to come.  Hours passed with no word from the doctors, despite knowing that surely by now her PET/CT was complete, results would be back and final results from her bone marrow biopsy should also return soon.

When our time of remembrance wrapped up, I shut myself in Lowell’s study and sat on the carpet as close to the heater as I could get, right up against the window, staring out, watching the slow consistent fall of snow.  The day before had begun with sun and sixty degrees and then the evening turned windy and fat flakes began to fall.  All through Wednesday the snow fell.  I sat with apprehension, knowing that at any moment the next twist in this journey with Allistaire would be revealed.  I sought to prepare my heart for what might come, to see the news as from the hand of Christ.  For I believe in God who determines all of our days before one of them has come to be, God who holds all of our life in His hands.

But it gets messy see?  I seek to follow my finite mind, a trail, a nubby fiber of reasoning and it all gets mucked up.  Did God cast Jens off that mountain?  Does God command the swirling rotation of electrons around the atom’s nucleus?  Is He Lord over atom binding to atom to form molecule, joining countless others to form the cell?  Does He declare, “here your proud waves halt?”  Does he pour forth the snow from its storehouses?  Does He count the number of hairs on my head?  Is He alert to my every rising up and laying down?  And what of another head sliced off by Isis, another body rotting away from Ebola?  Where is God in these moments?  Is He God?  What sort of God? Is it His prerogative to decide if and when cancer finally gnaws away Allistaire’s life?  Is He good?

The snow falls and I wonder.  What if it’s all just a bunch of crazy talk?  I’ve read the Bible, I know.  There are wild tales there.  Mysteries.  Paradoxes.  Seeming contradictions.  Countless questions left unanswered.  Answers that make me twist and arch in discomfort.  What if there’s no point at all, simply an incredible accumulation of mutations over eons resulting in a staggering fancy arrangement of atoms?  Who cares then?  What is Allistaire’s life?  Its loss is only sadness.  And what is sadness?  An illusion?  Another blind accomplishment of evolution, a component of survival of the fittest to get me to fight for the life of my offspring so my species can go on?  Is my love mere firing of neurons?  And what of Jens?  Was he just dust laying there on the table, soon to go back to join the rest of the earth to one day become a blade of grass, energy produced as the bonds of atoms burst in that furnace burning up his flesh, to go up and join the energy of clouds and wind and light?  Is Jens simply a molecule in the scale of the fish I will eat?  But where was Jens when that body lay on the table?  For he was not there.

The snow falls and I wonder and I feel sick to my stomach.  What is the point of all this, all this agony, if all she is is a bunch of atoms?  Let her go, let her go.  Walk away.  It doesn’t matter anyway.  It’s all illusion, all dream, all for what?  But I cannot go there, the very fibers of my being rail against that view.  I have seen beauty.  I have learned of kinase inhibitors, of heart muscles beating in unison, of atoms seeking electrons to at long last be at rest.  I have looked into Allistaire’s blue eyes flashing with delight.  Jens was no longer there, just beautiful, beloved dust.  I choose one unprovable over another.  I have seen the Lord.  I have heard His voice.  I stand with Job, having tasted a bit of loss, and I yield to the Lord and allow Him to instruct me.  The waves pound the shore.  The ocean speaks of the depths of God’s love.  The sky, as far as the east is from the west, speaks of His forgiveness.  Mountains fall into the sea at His voice, declaring His power.  The stars in all their vast infinitude, well, He calls them out one by one.  I smile.  My heart yields and I stand in awe and I know that when the day comes that I see Jens again, I will have first fallen on my face in adoration, in delighted submission to the God of the Universe who orders my days.

I walked down the hall into the kitchen where folks were about to head out to another family gathering in this week of sorrows, of mourning.  In that moment I was struck with the shocking suddenness and swiftness of Jens’ death, those sixty startling seconds.  I was struck by the contrast of that quick death with the nearly three and half years that Allistaire’s life has hung as by a mere thread, numerous times dangling over seeming insatiable jaws of death.  There is no leukemia in her marrow, I tell them.  No detectable cancer in her marrow and all of the six previous spots of solid leukemia as seen on PET/CT – gone.  There is only one small new spot of likely cancer.  A 1 cm brightness on the scan shows up on the outside of her left leg in the soft tissue.  The doctors are shocked.  With her ANC plummeting to zero, they assumed they would find a marrow packed with cancer.  But no.  Again her life is sustained against all probability.

After I return to Seattle, a biopsy confirms the spot in Allistaire’s leg is cancer.  Last Thursday, with giddy excitement, Allistaire was transported by a critical care ambulance to the University of Washington for a radiation simulation and consult with Dr. Ralph Ermoian.  Her leg may be deformed in terms of its long-term growth.  It may end up being shorter than the other but radiation should be effective at eradicating the cancer in this location.  Of course any part of the body exposed to radiation is also more likely to become cancerous down the line.  The barbs snag against our flesh, but we are well acquainted with such stings and give the warnings no attention.  Allistaire is set up in the CT machine to line up her leg and create a foam form around her leg and foot to keep it precisely in place during radiation.  Lines are drawn along her shin and upper thigh to align the lasers and two tiny jail-house style tattoos are etched into her knee, needle dipped in ink and scraped into tiny dots.  She screams and trembles in fear.  How many times have I had to tell her, “I know it hurts, I know it tastes yucky, I know it is scary, but we must do it, we must, or child, you will die.”

Radiation will begin on Wednesday when Sten and I return.  The hope is that Allistaire can make it through all of the ten days with no sedation.  She will be alone and must stay totally still for approximately five minutes “in the vault” each day, with several 30 seconds blasts of radiation.  It will be wonderful if she can do this without sedation.  While the three episodes of cardiac anesthesia (for her bone marrow biopsy, PET/CT and biopsy of leg) went great, sedation does pose its problems for the heart, specifically in reading the signs of how well the heart is functioning.  Each sedation brought lower blood pressures and an increased BNP.  Sedation requires no eating for long periods of time, impacts energy and can increase nausea.  The cardiologists feel that Allistaire is very ready to wean off of her Milrinone and have been eager to give it a try.  But sedation would confuse all the indicators of how well her heart and body would tolerate the wean.  They decided to turn down her Milrinone from .3 to .2 on Saturday and will keep it at this dose until after radiation on Wednesday.  If she does well without needing sedation to stay still during radiation and the wean of Milrinone appears to be going well, they will then turn her down to .1.  Today’s echo showed an ejection fraction of 31, down from the last one of 34 which was done from the prior at 38.  Each three of these echos the cardiologists say look essentially same, but boy what I wouldn’t give for better numbers.  Exciting times and nerve-wracking times.  Times of ever waiting.

If you walk in the Allistaire’s room, you will encounter a sweet-eyed five-year old girl bursting with joy and life and an insistent plea that you play with her.  What you see is the vibrant life of a girl we are so passionate to save, but there are happenings below the surface that constantly reveal another story.  She tested positive for C-Diff (Clostridium difficult), a bacteria in the gut, which has meant she’s been not only in ordinary contact isolation, but now contact enteric which means she hasn’t been able to leave her from for the last two weeks.  Her course of antibiotics wrapped up yesterday and if she remains symptom free, she will likely be allowed to roam the halls in a few days.    We hope she can fully get over this as sometimes C-Diff can be pesky and keep coming back.  Her other challenge is that her marrow has been incredibly slow to recover.  It finally did recover from her heavy-duty round of chemo that began in January but with this most recent round of chemo about six weeks ago, her ANC plummeted from nearly 1,700 down to 8.  The chemo she received, Azacitadine, is not supposed to be very count (marrow) suppressive but clearly her marrow has just been beaten down so relentlessly.  The major problems with this is that it means her blood counts aren’t recovering well enough on their own, resulting in continued red blood and platelet transfusions which tend to be hard on the heart (they are a big fluid increase and the fluid is heavy/dense).  Also, with such low white blood counts, she is far more vulnerable to infection of all kinds and it takes far longer to get over infections.  On top of it all, Allistaire still has cancer that needs to be warred against.  It has been six weeks since her last round of chemo began which means she’s two weeks past when she would normally begin another round of chemo.  The door to cancer cells has been left wide open.  She needs chemo.  She needs her marrow to recover.  It is all such a delicate balance and requires decisions to be made with no guarantee of outcome, just hope, hope.

The most recent bomb dropped on us unintentionally came when Dr. Ermoian talked to us about radiation.  He referenced the conversation he had with Dr. Gardner about the pros and cons of this focal radiation.  He mentioned that she said Allistaire would not be able to get TBI (Total Body Irradiation).  My mouth dropped.  My heart dropped.  Heat clamped down on the back of my neck.  Allistaire was not able to get TBI in her last transplant.  It is a core part of her hope to finally be cured of AML.  It can have long term serious consequences for the heart.  Oh God.  Here we are again – your most powerful weapons to kill the cancer are the very weapons that will in turn take your child’s life.  There are no letters to sound-out the agonizing wrathful rage and sorrow I feel at this plight.  I want my child to LIVE!!!!!  Then Dr. Ermoian says that it is not even clear how effective TBI is in the long run.  Dr. Gardner’s words from months ago come flooding my mind, “We like TBI so much we give it to babies.”  Her point was that they so believe in the worth of TBI that they even give it to infants – to infants!!!!  Do you know what TBI is?  I will quote again what the Fred Hutch website says, “it is like being near the epicenter of a nuclear blast.”  Your baby, my little girl, intentionally placed near the epicenter of a nuclear blast?!  Would you ever do that?  You would, you would if it was your only hope that your child might live.  But what wretched, agonizing choices, not really choices at all.  You may be weary of me asking you to give money to cancer research.  But I’m going to ask you again, if you haven’t already, would you consider giving to Obiliteride? Obiliteride is a fundraiser where 100% of donations go directly to cancer research at Fred Hutchinson Cancer Research.  Donate HERE.

I have been so thankful for Jo’s heart in the face of losing Jens.  My heart and faith have been encouraged as she has sought the Lord, His directing, His holding her up, His provision.  She has determined to be on the look out for what He will do, what He is up to.  Her fight has only just begun.  These days I have felt so weary, circling endlessly in this eddy, little to no seeming progress forward, no end in sight.  Mine has been a choosing to lift my eyes to Christ for three and half years.  Jo’s soaring spirit admonishes mine to look back over the bounty of God’s provision, of His faithfulness, of His words etched into my heart over these years.  And really, Jo’s fight to have eyes to see the Lord did not begin on April 11th with Jens’ body hurled over cliffs, nor did mine begin with Allistaire’s diagnosis.  No, long before these days, in long years past, a seed was planted and the root has gone down.  Our thirst for our Father, a scanning the horizon of our days for His face, came long before.  Do not wait for tragedy to seek His face.  Determine to seek Him now.  Thirst.  Hunger.  Yearn.  I believe lie when I live in wait for my circumstances to line up with my desires for how my life should look, waiting to truly live, to know rest and satisfaction.  The Lord IS my life!  The Lord IS my dwelling place, my home.  My Father is my sabbath rest now, now!

With Jo’s permission, I have copied below her words from Jens’ memorial service and a link to the video of the service HERE

“Jens.
 A single. Mighty. Syllable. Four letters that align so solidly beside one another, providing a foundation on which to build a life, develop character, cultivate relationship, grow ever more in integrity.

Jens.
 A name woven deep into the tapestry of my soul, your fibers reinforcing my own at their weakest places and adding depth and beauty to my places of strength.

Jens. Jens. Jens.
 I hear your name with each beat of your heart and with it I am transported, whisked away to cold, foggy early mornings in the Lamar Valley of Yellowstone, peering with anticipation through darkness as we wait for the first signs of dawn to show itself. Another heartbeat and I sit in the passenger seat of the 4-Runner as we bounce along dirt roads of Montana, nowhere to be but right where we are. My heart beats again and I find us snuggled in the tent perched high in the mountains, your face lit up as clear as day with each bolt of lightning that cracks above us, your eyes gleaming, awed by the display of power and beauty of our God. Another thump of my heart and I look over my shoulder to see you flex your strength against the waters, navigating the raft down the river or the canoe through the lake, you tirelessly paddle and steer as you smile back at me. My heart beats and we wake up and our eyes meet – we both smirk and shake our heads in wonder of the ball of black and white fur that so masterfully weaseled his way between us in the night – Peyto Dog was ever faithful in keeping tabs on his pack, even as he slumbered. Another beat and you’re making popcorn, pouring copious amounts of butter over the top. The next beat sends me to the garage where I serve as your third and fourth hands as you skillfully craft another beautiful wooden piece with those rough, weathered, hard-working Yensie hands. Another beat and we’re gathered around the table at your parent’s house, everyone talks and eats and talks some more. I find you on the couch or in the hammock reading, another Ivan Doig book down, another rich classic finished. I find myself on skis, skinning up a glistening, iridescent blanket of snow off the Teton Pass, following you and Peyto Dog up, up, up… and surfing the deeps back down again. I see you crawling around endlessly on your hands and knees, a thick furry blanket over your back as you delight Allistaire with your bear grunts and tickles. I walk around beside you around the park at night in the cold, your big red hat covering your head, every now and then a wisp of smoke rises as you puff your pipe. I find you lying on your back, head in a cupboard, fixing a leaking pipe, repairing the garbage disposal, troubleshooting the dishwasher that’s on the fritz. You come to bed late the night before a backcountry venture, waxing skis, ensuring you’ve packed appropriately, pouring over weather forecasts, condition reports, and the next day’s terrain on google earth just one more time before you rest. Another heartbeat and you‘re in your fleece trout pajamas being the goofy guy I so love, making up silly dance moves and striking poses, all to see my face light up and hear laughter pour out. Another beat and we’re sitting around the fire, watching for hours as the embers dance their way to the inky, star-studded sky. I blink and the night sky is still there, but the dancing embers have been replaced by the mesmerizing green + gold + white dance of the Northern Lights in Norway…

These heartbeats and moments in time continue on and on and on, filling me with memory of you. Other heartbeats are shocking, excruciatingly painful, visions of what could have been, working through the complexities and beauties of this life as we would have grown older together… these beats are unavoidable and meaningful, our unfulfilled dreams that will hang in the balance.

I press my ear to your chest, hoping to hear and feel our heartbeats align. Yours is a mighty, sure rhythm, the metronome stomping out a rhythm for your life. Oh how I marveled at it… this steady beat was at the center of all other creative rhythms you so incredibly pounded out – whether on pots and pans as a young boy, the steering wheel on road trips, the drum set in the northeast corner of the house, or as you poured out yourself on Sundays. Days you played at church I would intentionally show up after the music had already begun as I so loved pulling into that parking lot and stepping out of the car and hearing the only audible noise from inside filling air: Yens stomping out a rhythm on the bass drum, an extension of your wildly loving heart, pumping life through your body, through our family, through this community and beyond as you gave yourself with abandon to worship the Giver of all Life.

My heart has been privy to gentle whispers over the last decade of life… the first, before I knew you well, was God’s soft nudge and raising of my eyes to see you as he said, “That’s HIM”, something I never told you until 4 years later and we were husband and wife. My heart also endured a recurring dream over the last couple of years… I was always spared details about what took your life, but found myself widowed due to a ski accident, a burden that always fell to Peder to relay to me. I had this dream, this preview of life to be lived out without you by my side, and though it pained me so, it brought no anxiety. We would talk about it and you always refocused my vision, for you firmly believed that your task was to live fully vested in each day, deeply committed to taking responsibility for your actions to best preserve your life + the lives of others. The rest was up to the Giver of Life, who numbered your days before he fashioned your large cranium, wavy blonde locks, green eyes, and heart of gold in your momma’s womb… when this day came, it would matter not what you were doing, you would be ushered swiftly from this earthly realm to the feet of our Christ, our King. When the avalanche report came out detailing your accident and producing the exceptionally rare statement that there is, essentially, not a single explanation for what occurred on April 11th, my heart somehow found rest in that this was the day I had been prepared for over the last couple of years.

Your above and beyond efforts to be safe in the backcountry – from obtaining your Wilderness First Responder and Avy 1 certifications and rereading through your course materials a couple times every season to the so-called “over packing” of extra first aid and survival items – has preserved the lives of your brothers and friends over the years, and for that I am exceedingly grateful.

As my heart beats on, flashing through fifty-some treasured memories and painful dreams a minute, I have yet to hear it muster “Why God?? Why now? Why my Yens??” …Instead, all I hear is the persistent inquiry, with a tone of expectation, “What are you up to, my King?” For God, you still sit enthroned in my heart and in the heavens and beckon me to love you more deeply… and you even sweetened the deal, at Yens’ request, I’m sure, by gifting me with seasonal favorites of mine, heaps of spring snow followed by blue skies and radiant spring sun, both of which bring such promise of renewed LIFE. I’m on to you, Lord, I see you moving and shaking, and extending such Love, that same wild love that brought such vigor to the heart of my grizzly bear.

So… I implore you who listen in today, on behalf of my best friend, my love, my sweet honey: slow your selves long enough to picture the four chambered organ just beneath your sternum, a perfect + harmonious balance of electricity, chemistry, pressure, and tone, a gift with at, without any conscious effort on your behalf, send the gift of life throughout your body to sustain you. WONDER. MARVEL.

Jens’ big, giving, powerful heart beckons me and you to march onward in his wake, embracing the grace and freedom he wrapped his life around, to continue to stomp out that rhythm that we’ll hear the most loudly when the thunder clouds roll in and Yens takes to his drum set in the sky and makes a mighty ruckus with THE KING.

You are dearly loved, deeply revered, immensely missed by a greater group of people than you would have ever fathomed… I cannot wait to look you in the eyes again, see you smile, and fall on my face beside you in worship at the Throne of Grace.”  (Written by Jonell Anderson for her husband, Jens’, memorial on 4/18/15)IMG_3254IMG_3102 IMG_3109 IMG_3119 IMG_3163 IMG_3193 IMG_3200 IMG_3201 IMG_3202 IMG_3211 IMG_3227 IMG_3232 IMG_3234IMG_3237 IMG_3257 0419151428 SubstandardFullSizeRender SubstandardFullSizeRender-2 IMG_3292 IMG_3299 IMG_3320 IMG_3325 IMG_3322 IMG_3323 IMG_3331IMG_3335 IMG_3336 IMG_3337
IMG_3361 IMG_3374 IMG_3375 IMG_3376 IMG_3382 IMG_3400 IMG_3415

IMG_2846 IMG_2854 IMG_2859 IMG_2862 IMG_2866

Quiver

Standard

IMG_3065I can’t tell you what it’s like to lose your child.  I simply don’t know.  But I can tell you what it’s like to walk through this world with your child’s life ever, ever hanging by a thread, ever threatened, the wolves snarling, the glint of teeth.  I see the girl in her soccer uniform with her mom and little sister as I descend the escalator in Target.  My legs weak and muscles quiver, drowning in some sort of chemical sorrow, trying to catch their breath.  Such beautiful normal life.  People out living their extraordinary, ordinary lives and I feel perpetually trapped on the other side of a glass wall.  The little blonde haired girl sucking her thumb in the coffee shop, wearing the same tights I once bought for Allistaire, tights not too small to wear, just irrelevant in the world of the hospital.  I walk through the clothing section for little girls, barbs pierce my flesh.  I buy her clothes because clothes mean you are alive, you have a life.  But I don’t buy a size up with a future in mind, even clothes that acknowledge the change of season only serve to declare her plight, a life lived inside where temperatures never change, wind never blows nor rain falls.  I see people out in their yards raking, mowing, digging, flowers bursting and I envy, I envy.  I long to be on knees, hands in dirt, pulling weeds, clearing the dead debris of winter and sinking flowers into soil.  My life is lived in strange parallel, at moments seeming to cross over but ever tied to a rope threatening to pull me down, pull me under.

I have routines that on the surface create the ruse that there is normalcy, but these days are only normal because they repeat without seeming end.  Weekends are strangely hard.  They are a gift because they are a chance to be out of the hospital while my parents stay with Allistaire and I get two nights of unbroken sleep.  But they are spent alone.  Alone I go to the movie.  Alone I eat at a restaurant.  And I have chosen this.  There are many who would join me but I have preferred to be alone because I so weary of the constant barrage of human interaction every day, all day and night at the hospital.  I am desperate to flee from it and yet, I don’t want to be alone.  I want to be with my family.  I want to be doing ordinary things like waking up together in the morning, making breakfast, doing laundry, going to the grocery store, sitting in my chair by the window, sweeping up the incessant needles from the fir tree, making dinner.  But I am cut off from these ordinary pleasures and so I pass through spaces, silent, appearing to be apart of the world of the living, but like some agonizing spirit, dwelling in the space between.

My mind feels gripped in a vice, pressure now intensifying, now releasing but ever-present.  The numbers are relentless, my brain analyzing them ceaselessly, turning them over this way and that, holding them next to sets of numbers from other days, trying, trying to make sense of it.  What am I seeing?  What do they tell me?  I look at her and I see bright thriving jubilant life that could and would flourish all the more if we could just escape the grip of this place.  We have officially passed the mark of 365 days lived within this hospital, one year of her life spent within the confines of these walls.  Twenty percent of her life has been lived constrained to Seattle Children’s Hospital.  Sixty-five percent of her life has been spent fighting for her very life.  I weary.  Oh how I weary and yearn with panting desperation at times to just get away, get out, flee.  But there is no escaping, there is no breaking over the walls in the night and running and running until you can’t anymore.  The only way out is to be released.

Last week the doctors had a planning meeting.  On that day, Allistaire’s BNP was a beautiful wee little 500 or so and her kidney function numbers, her BUN and creatinine were gorgeous, proclaiming happy kidneys profuse with blood.  Most of last week was an ongoing struggle with her being nauseous, throwing up consistently once or twice a day.  Sometimes she would just be nauseous in the morning and throw up once, having no issues the rest of the day.  Some days she would eat well, getting in all her needed calories and fluid, just to throw up ten minutes after going to bed.  I felt under tremendous pressure, knowing that nausea and lack of appetite can be signs of heart failure.  Helping her get in the necessary calories and fluids is totally my realm of responsibility and I was desperate for her to demonstrate that she could do it.  Yet each time she cried out in terror of impending throw up, clutching the little gray basin in front of her chest and out would come hours of effort, I felt such overwhelming defeat.  Each time she threw up it meant we were behind on calories, behind on fluids and with far less time to get them in before the end of the day.  The moment she finished throwing up I had to put milk or juice and food in front of her again, pushing, pushing her to consume.

There are so many layers of reasons she would struggle to eat.  Three years of chemotherapy has created plenty of negative associations with eating.  Incredible gut pain from typhlitus has made her on much higher alert in terms of stomach pain.  Her entire system of stomach and intestines were at complete rest for nearly two months during which time she was on three types of hard-core broad spectrum antibiotics.  Everything is slow and any pain, whether from gas, need to burp or nausea all gets mixed up in her mind and triggers her to throw up.  Her gag reflex has intensified dramatically.  It has all led to an all day long effort to get in food and drink with repeated defeats.  I don’t know if there is anything more core for a mother than the need to feed her child.  I feel it throughout my flesh and far beyond the workings of my mind, this desperate need to provide her nourishment and all the while fear of how it will be interpreted by the doctors.  Thankfully, both the PICU attending and our ICU Continuity Care doctor, affirmed that Allistaire has many reasons to struggle with eating and that they were not overly concerned about it being directly tied to her heart function, given how encouraging she looked clinically and with all her labs.  I finally felt some relief, having been given permission by the doctors to let down my guard a little.

I was encouraged to, “look at the trajectory.”  By all other measures she was doing great.  Her BNP was bouncing around in the four to five hundreds and all her other labs were good, especially once they transitioned her from IV Lasix to PO (“Per Os” in latin which means “by mouth”).  The thing is though, a slight bump of the numbers in the wrong direction sets you on high alert, the ringing fear rising.  Yeah it’s a little blip but it could be the beginning of a frightful trend.  And so it has been, her BNP slowly rising from that beautiful low, each day a little higher and today 861.  Her BUN too slowly rising from a happy 21 to 31 today.  But the mind bending thing is, she just looks so great.  She looks great!  She’s happy, she is playful and less nauseous, rarely throwing up now.  Her average heart rate has gone up but at least some of this is due to the fact that she is far more active these days.  Ashlei, our social worker, saw her Friday after a week and a half gone, and exclaimed that she just looks so good, far more her normal self.  It’s true, her cheeks are pink and she has a delightfulness to her being.  It is a hard contrast to these numbers trending in the wrong direction.

Are we about to be dragged down again under those dark suffocating waves?  Was this just some fantastic lull, a beautiful blip?  May it not be.  Her echocardiogram is scheduled for tomorrow morning.  I know to expect her BNP to be high tomorrow as it has been each time she gets a red blood transfusion, which she got this morning.  We’ll see what her BUN and creatinine are.  I feel terror, terror.  What will I know tomorrow night?  How will the world tilt and spin in these next 24 hours?  I don’t know what to wear.  It sounds absolutely absurd, but it’s supposed to be sunny and 66 degrees but some how in some stupid way I feel distressed to wear cheery clothes that may be paired with weary tear strewn face.  I thought we might order Pagliacci’s for dinner tomorrow.  It’s always fitting, whether in sorrow or rejoicing, but which will it be tomorrow?

For so long I have been tossed this way and that, flesh shuddering against stone walls, the force bruising already bruised body again and again.  I am battered, tender and any new hit hurts deep and hurts sharp.  Like Allistaire’s chemo weary heart, so deeply wounded from relentless assault, so is my heart, my being thrown against the rocks so many times.  Am I overly dramatic?  Perhaps.  Am I asking for pity?  No.  But I find the tears so close to the surface on so many days.  It feels easier to quarantine my life to that of the hospital world rather than having to confront the extravagance of other’s ordinary life, a life for which I am ravenous.  I had allowed my mind to wander with hope for escape.  I told Allistaire there were daffodils and tulips blooming outside.  I have yearned with a keen intensity for her to be outside.  I am desperate to see her out on a playground with shoes on, not slippers.  The hoped for plan was that Allistaire would be off of Milrinone completely sometime this week.  She has weaned down .1 every three days or so and is now, as of Friday afternoon, at .1.  All she had to do was finish these last few steps, spend 24 hours in the PICU with no Milrinone and then transition upstairs to the cancer unit for a week for monitoring and getting her at the right dose on a few meds.  Then, then we would be free.  We would be released like birds too long in a small cage.  I could taste the beautiful sweet hope and see its translucent yellow ethereal light.

Like some triggered trap snapped closed, these numbers have shut out such lovely hopes.  Perhaps I should not have hoped.  Perhaps I should have kept those black blinders on my eyes, a beast of burden commanded to look only at the path immediately before you, be not distracted, keep your view small.  I have not figured out how to make this hurt less.  The only solution seems to be to be less tied to her, to loosen my grip and gain some distance, watching as if a movie, a story of some other life.  But I can not.  I can not.  I can not want less to see her live.  And even as I feel such ripping soaring hope for her to live, I fear too what sort of life she might have before her.  I want her to live that she might be ravaged all over again by transplant.  Who might she be on the other side of that?  I see the ravages other children have endured to keep their life, ravages that keep devouring more.  But wouldn’t I want a broken Allistaire rather than no Allistaire?  I would take her broken in a heart beat over having her no more.  But is this just my selfish wish, for my own good?  I look at her bright, cheerful face, her endless pleas to play hide-and-seek, her wiggly joy and I think, no, it is not just my wish.  How could I walk away from this bright spark?  How could I let up for one moment attempting to keep that flame fueled with life?

I am lulled by the cycle repeated over and over and yet shocked that it is once again Sunday afternoon and I am preparing for another week in the hospital.  Today marks her 80th inpatient day of this stay.  For seventy-two days, she has been confined to the PICU.  And here we are, on the cusp of another week and another echo.   The snow falls, flake by flake, finally amassing to something visible only when millions have fallen, though each flake so beautifully unique, intricate, designed.  The season passes and returns again.  The snow falls and is eventually blanketed by another layer, and another.  On and on it goes, year after year, individual snowflakes bound one to another and pressed down, compressing under the weight above of snowflakes past and snowfall present.  With imperceptible motion, gravity pulls at the enormity of the glacier, drawing it down, gouging sheer rock from its place of such seeming eternity.  And one day you stand in that magnificent space, that airy immensity of openness where once there was rock and now there the indescribable joy and feeling of exhilaration, of peace silently emanating from an emptiness between ridges of mountain, bright blue lake before you and green sweeps of valley rising all around, blankets of wild flowers, tender and tenacious.

What is the Lord up to?  I cannot tell you.  I stand in the storm, snow falling all around, each individual flake unique and perfectly designed and joining the masses to become indistinguishable.  I may never see with these earthly eyes, that breathtaking mountain valley, blue lake reflecting blue sky.  The Lord’s ways are not my ways.  His story, His creation spans eternity and I and this story of Allistaire are but a breath, but a passing vapor, not insignificant but designed, intricate, unique.  I don’t know what to pray, my heart too weary to muster words, but I fall at His feet.  I am so very weak Lord, so bruised and tender, tired, so tired.  Why so downcast Oh my soul?  Why so downcast?  Put your hope in God, put your hope in God.  He is my only hope.  He is my anchor in this storm, this thrashing back and forth, this constant buffeting of wind, I am tied to Him, in Him.IMG_3016 IMG_3019 IMG_3021 IMG_3022 IMG_3024 IMG_3025 IMG_3034 IMG_3036 IMG_3037 IMG_3041 IMG_3049 IMG_3055 IMG_3056 IMG_3058 IMG_3067

 

Buoyant

Standard

FullSizeRenderIt’s amazing how your whole world seems to shift when you suddenly see that crack in the door that seemed so thick and dark and impenetrable, but there it is, this crazy brilliant blaze of light, flooding, arching, enlivening the air around you!  Your foot steps out with greater stride.  You yearn for a jaw and muscles of cheek that would enable a bigger smile, a fuller beam from your face.  You want to stop people and tell them, you want to lift your throat to the blue, blue sky and declare, “My kid might make it!”  I’ve been stopping to smell the flowers, the ones that smell like jasmine and fragrant the air going up the stairs to the parking garage.  The sound of birds in the morning, birds in the evening, they now sing a song you feel yourself singing – a song of declaration that life cannot be held down by death.  I careen my neck backward and stare up at the blue of sky broken with criss-cross of pale pink blooms, thousands of petals on cherry trees.  You rejoice that one can buy daffodils and tulips, even if you cannot because you inhabit a world where no plants are allowed – but they are there, exulting that spring has come, wild, exuberant, lush spring has come again to the world!

My rejoicing at the coming spring came at the very first signs of its presence, at the crocuses pushing through the soil, at the tender buds on seeming dead trees, at the sound of that first robin.  Spring makes my hear soar, soar.  In the midst of my darkest days over the past few months, spring has quickened my step, reminded my heart to hope, to be on the lookout for life, for rejuvenation, for overcoming the cold grip of seeming death.

But today I was amazed as I walked up to the front of Metropolitan Market – the absolute extravagance of life just exploded with glorious color around me.  I wanted to tell the people to stop and stare and gape and be in awe of how rich and overflowing this life is!  Look at this life!  It is a wondrous, wondrous, mind-blowing sensation to realize your child, the one seemingly doomed to death, might just make it, might just have a way through.  I tell myself to restrain, to not hope too much.  The end is yet veiled.  But I DON’T CARE!  I am full of swirling, bubbling joy at the hope, the possibility made more tantalizingly real, that Allistaire Kieron might just do what was said probably couldn’t, wouldn’t.

My dad, who spent the weekend with Allistaire, texted me as he left the hospital yesterday, that Allistaire would have an echo today.  Sudden heat of fear swamped over me.  I thought it was going to be a chill Monday.  I thought I wouldn’t have to worry about another echo until next Monday.  I scanned and scanned, running over all the details I knew about Allistaire, looking for a glimpse into today’s echo results.  What I knew is that Allistaire’s appetite had continued to improve and her energy level was nearly off the charts.  The girl was so full of wiggling, giggling life!  Signs of the wean off Milrinone failing would be fatigue, lack of energy, nausea, lack of appetite, increased BNP, increased heart rate, decreased profusion, weaker pulses, slower capillary refill, worsening kidney function numbers – none of this – there was not one indicator that the drop from .75 last Thursday to .6 had any negative effect.  If anything the girl just seemed like she should explode out of the ICU out onto a playground.

This morning I awoke with a prayer that is prayed nearly everyday as my alarm goes of at 5:37am.  “Lord, hold me up, come what may.  Lord, oh God, well you already know what I so desperately want – you know I want Allistaire’s heart to regain its strength so she can go onto have her transplant and onto life without cancer.  Help me to yield to you.  Oh Lord, hold me up, hold me up, come what may.”  The labs showed an ANC of 808, a BNP of 669 and great kidney function numbers.  Did I dare hope that today’s echo could be, well, could it be, maybe, a wee bit better?  Such a frightful thing to hope, to stick your neck out rather than roll into that protective ball like a potato bug.

The echo was wrapped up by 9:19am and I was comforted by a giant font of a heart rate on the monitor that came in about 115 beats per minute with a respiration of about 20.  So, so much better than two months ago when her heart rate was in the high 180s and her respirations in the 60 plus breathes a minute.  Then the hours wore on and on.  Allistaire’s been popping up each morning about 8am and has been in rounds with myself and the doctors nearly every morning.  She loves it.  They love it.  I love it.  I don’t think a patient in the ICU has ever participated in rounds before.  But the 8am wake-up makes the day seem two hours longer than in times past.  I had lots of time to work on writing a pile of thank you cards that had been harassing me for weeks.  I asked the nurse nearly every hour to check the computer to see if the echo results had been posted yet.  By 1:30 I asked the nurse to page the cardiologist to let her know Allistaire naps at 3pm and I’d really like to hear from her by then.  At about 10 to 3 she said she’d be there in 15 minutes.

Jenn, the Child Life Specialist, was in doing some medical play with Allistaire where Allistaire gets to do to a doll all the sorts of procedures done on her and she and Jenn talk nonchalantly about it while Jenn gathers intel about what Allistaire prefers when she gets a shot or has to have her lines flushed.  Allistaire is joyfully oblivious and just likes putting bandaids on the doll, now named Jewel.  I know the time is coming, it’s coming, at any moment Dr. Kemna is going to walk through that door.  I suddenly realize it could be worse, oh what if it is worse?  How utterly disappointing.  I pray.  I remind myself that God is in control of every detail of Allistaire’s flesh.  No matter the results, they come from God’s hand.  He will be the one handing me the results of this echo.  Will I look beyond this moment, beyond this detail of what I so desperately want.  Will I lift my eyes and look out, up, wide, high, deep, not just temporal, but eternal? Hold me up Lord.  Hold me up.

When Allistaire spies Dr. Kemna, she immediately dives underneath her blanket, a quiver of barely constrained glee.  She has clued me into the game we must play.  Jenn and I begin to fear the soaring of dragons looking for some tasty girl to munch on.  Oh dear!  Where can Allistaire be?  Oh it looks as though the dragons already got her, she is nowhere to be found.  The blanket is a roiling flowered sea of five-year old delight with periodic poking out of legs and little fingertips gripping the edges.  Dr. Kemna joins in and only amps up Allistaire’s joy.  Finally she emerges and Dr. Kemna listens to her heart and I restrain myself a few more seconds from demanding the only number I care about today.  Finally, finally she turns.

Dr. Kemna tells me she doesn’t think Allistaire’s heart has improved as much as the number indicates.  She has an ejection fraction of 35 (up from 21 last week) and a shortening fraction of 15 (up from 11).  My heart leaps and squeals with unfettered joy!  In further conversation, Dr. Kemna tells me that Allistaire’s heart does look a little better, but she’s not so sure it looks as good as an EF of 35, maybe more of an EF of 29.  Huge smiles!  Massive elation!  29?!  That’s awesome too!  I mean, good grief, 35 is spectacular but even if 29 is the conservative number – that is so totally glorious!  She says there is a clear improvement from the echo three weeks ago when her EF was 11 and the most clear improvement is that the mitral valve looks better.  Apparently, once the mitral valve begins to go, as was so clear on that awful echo three weeks ago, the heart just begins to lose steam and try as it might, it just gets worse and worse.  Once the heart is so dilated that the mitral valve begins to fail, the blood regurgitates back into the chamber and efficiency is lost.  This makes the heart have to work harder which dilates the heart still further, only worsening the whole situation.  But Allistaire’s mitral valve is on the mend and this, Dr. Kemna said, is the most encouraging sign for her heart.  The other great thing is that Allistaire is still not even on the maximum number of meds that may be able to help her heart recover.  As her dose of Milrinone goes down, the cardiologists are hoping to add Isosorbid dinitrate & Hydralazine.  Once she is stably off Milrinone, they would add on Carvedilol as well.  I’m all for as many option to help sweet girl’s heart as we have available!

As Dr. Kemna gazed at Allistaire, now frolicking to an even greater degree with Jenn and Ashlei, our social worker, she asked what is keeping Allistaire in the hospital.  “Milrinone,” I said, “only Milrinone.”  She’s off TPN and lipids and is successfully getting in enough fluids and calories each day, her neutrophil count is far over the needed threshold of a minimum of 200 and she is taking all meds by mouth with the exception of one dose of Lasix each day which can easily be converted to by mouth.  Even her chemo, Azacitadine, which is set to start sometime this week, can be given out-patient.  Dr. Kemna agreed that Allistaire is definitely ready to take the next step down in her wean off Milrinone and ordered the dose to drop to .5.  When the heart failure team met last week, they all agreed that Dr. Hong’s proposed .1/week wean was far too slow.  A typical wean is in drops of .25 every couple of days, “So,” Dr. Kemna told me, “a .1 drop every one to two days is still very cautious.”  From what she explained, often you can go a bit quicker in the wean in the middle of the doses and then just slow down more when you get toward the very end.  At this point, she will be checking in on Allistaire each day and will reassess whether or not she can drop to .4 either this Wednesday or Thursday.  “If she continues to look this good, she’ll have no problem with the next drop,” Dr. Kemna told me.

Bright, crazy beautiful beam of intoxicatingly beautiful light!  Oh, and Allistaire is no longer a baldy top.  She’s more of a fuzz top now.  So soft and so seriously adorable.  Thank you God.  Thank you!

And here’s a little gem for you to enjoy – Allistaire as a star in a short bit on PBS about music therapy 🙂  Click HERE

Glimmer

Standard

IMG_2964Delayed Gratification.  Joy Set Before Me.

You can endure a lot…if, if you see a glimmer of light.  If you can grasp onto that shred of hope.  But if it’s all for not, if nothing will come of all your straining, all your loss and sacrifice, it’s ever so much harder to press forward.

But…you catch that glimpse…you sense before you that the light is coming and it invigorates you to lean into the endeavors before you.

I don’t know if Allistaire will make it out of this alive or not.  There is so much good I can easily imagine if she lives.  There is also good I can imagine if she dies.  If she dies, I pass over that line.  I enter a territory I have never yet had to tread.  If she dies, I will dwell there, with them, with Beth, Merle, Rachel, Julie, Devon, Ryan, Darliss, Janett, Shannon, Susan, April…I will share in their company and that would be good and I would have an understanding that at this point is only imaginings.  I cannot let go of my sweets but it hurts my heart to not be able to draw yet closer to them in their places of pain and hope.

For now, we are here, here in the dark but with a glimmer.  For me the glimmer began with remembering the statement that, “I would be flabbergasted if your insurance approved this transplant.”  This was voiced by a woman who has been integral to coordinating all the details of transplants for years.  And you know what, Blue Cross Blue Shield of Montana has approved Allistaire’s transplant.  Flabbergasted has happened and it was a sweet, tangible reminder that the “unlikely,” has happened so many times for Allistaire – good and bad.  What shouldn’t have been, has.  So if the doctors say she probably won’t recover the needed heart function, well, they could be right, but they might not.  Flabbergasted can happen.  It is a reminder that God will do what HE will.  There is SO much to tell, so much in fact that I’m sure I will fail to get it all down.

When did the shift begin?  On February 15th Allistaire finally showed evidence of her bone marrow recovering after 38 days at zero.  Then there was a solid week of serious pain as her white blood cells flooded her gut and got to work on healing.  Sometime in the few days preceding our especially difficult care conference, as her ANC continued upward, her pain began to subside to the point that she now needs only one dose of pain meds every several days, if at all.  On the day of the care conference something wondrous happened.  Her BNP (Brain Natriuretic Peptide), dropped below the terrifying lab value of greater than 5000.  This has been its approximate path:  Over 5000, 3800, 3200, 4000, 2600, 1400, 972, 1040, 1320, 1090, 2350, 552, 1100, 749, 1070.  The big blip back up to 2350 was most likely due to getting blood the day before on her birthday.  A transfusion of blood resulted in a big increase in fluids and blood is a very heavy fluid so while the heart loves blood, the big extra dose caused a bit of distress in that narrow window.  I cannot convey to you how glorious it is to have that wretched number dropping!  I have no idea if it’ll keep going or if it will settle at some point.

Another development is Allistaire’s overall activity and joy level.  The girl is coming back to herself!  I remember trying to get Allistaire out of her bed after a week in the PICU to have her walk to the door of her room – it was such a great and painful effort.  In reflecting back to the days after Allistaire’s transplant and being in bed so much, I knew the sooner we could get her walking again the better.  The scope of my abilities to directly help Allistaire through all of this are so limited, but I knew I could help her get moving.  So what began as one walk a day from the bed to the door turned into a lap from bed to couch to door and back to bed, three times a day.  We kept increasing the distance and the frequency.  Thankfully, the Infectious Disease doctors approved the same activity plan she had up on the Cancer Unit which meant we could finally leave the room as it was getting absurd to try to make progress within the confines of her small room.  We are now up to a lap around the PICU and Cardiac ICU five times a day.  That is equivalent to a half mile a day.  She giggles now.  She jokes with the doctors and nurses.  She plays around in her bed and kicks and seems to have no limitation on her movement.

Last week Dr. Yuk Law, head of the Heart Failure team, was our attending cardiologist.  One of my greatest joys has been seeing him watch Allistaire with a look of disbelief on his face.  My impression of him, which has been supported by that of others, is that he is a very even keel man.  As he watched Allistaire frolic in her bed, he pointed out that she was moving a lot.  “Well, yeah,” I thought,”that’s Allistaire you’re looking at.”  I then went on to tell him about her progress in walking around the Unit.  With a look of surprise, he asked me to clarify that she was, what, out of her room, walking around?  Yes, yes, around the unit five times a day, I reiterated.  You see, she is literally the only person in the whole ICU who is walking around.  He wanted to know if she got out of breath.  “Not even a hint of out of breath.”  He said he was astonished.  He watched to see her as she finished a lap to verify my report.  With a dropping BNP and such incredible physical activity, he discussed the possibility of trying to wean her Milrinone, but he wanted to wait for Monday’s echocardiogram.

Flabbergasted.  Astonished.

On Thursday, March 5th, two weeks after her last discouraging CT, Allistaire had another.  This CT would look for fungus in the sinuses and chest with the hopes that if it were not there, we could stop the Micafungin, which is a very broad spectrum IV anti-fungal, and return the prophylactic, Fluconazole.  They would also look at her gut to see the state of Typhlitus.  If she was all healed up, they could finally end over 50 days of broad spectrum antibiotics.  The CT showed that the sinuses were completely normal and clear.  Moving down to her chest, it says the “lungs are clear.  Previously noted predominantly sub pleural groundglass opacity and consolidation has resolved.  The proximal airways are patent.  No pneumothorax or pleural effusion.”  Previously noted small right pleural effusion from 2/20/15 has resolved.”  Did you get that?  Things look normal.  Issues have resolved!

It goes on: No enlarged lymph nodes (a common place for her cancer).  The liver, spleen, gallbladder, biliary tree, pancreas, adrenals, kidneys and bladder are normal.  No pathologic mass identified.  Previously noted multifocal bowel wall thickening involving the colon and rectum has resolved.  The bowel is now normal.  The appendix is normal.  What sweet relief!  Her whole gut has totally healed, there is no fungus and you know what, even previous evidences of heart failure in her lungs and liver were not mentioned because they are not there!  I was so elated!  This also meant two more IV meds are done.  Over the preceding week, we had begun to transfer IV meds to be given by mouth as she could handle it.  As of today the only IV meds Allistaire is on is Milrinone and Lasix.  Of course, she takes a total of 20 doses of meds by mouth each day, but a number of these are just preventative.

The other big development is that Allistaire has begun to eat.  I joyously charged into Pagliacci Pizza last Monday evening to declare that my girl, who had not eaten in nearly 60 days, wanted cheese pizza and lemon San Pelligrino.  She ate with a zeal of old.  Then she threw it all up.  Too much too fast.  Over the last week she’s struggled with nausea but continued to have an appetite, even requesting a hotdog the other morning before 8am.  Tonight’s request is chicken quesadilla, rice and chips from Chipoltle.  The nutritionist was able to reduce the calories in her TPN (IV nutrition) and get rid of her lipids all together. Over the weekend, Dr. Law decided to have the team completely cut the TPN given that oral fluids have less of an effect on the heart than do IV fluids.  I won’t deny that I was surprised and frustrated by this rapid adjustment.  Getting Allistaire to eat is a time-consuming and often very challenging, stressful process, especially when it all ends up in being thrown up.  Nothing is more defeating.  A typical meal requires 2-3 hours of tedious intermittent bites and prompts to drink.  By last Friday she was probably taking about 500 calories in a day with a total daily goal of 1,200 calories.  So much of it is hoping Allistaire won’t be over nauseous (she is on anti-nausea meds she gets every 6 hours) and strategy – what will give her the most calories that she can also keep down.  (By the way, this is not a request for input on this matter.  Believe me, I’ve had countless conversations, and innumerable attempts at a variety of options.  We are three plus years into this food battle and I admit, advice at this point is not welcomed.)  Yesterday the girl got 1,300 calories in.  I was amazed!

Today we’ve had to make a few food adjustments due to an “acute kidney injury.”  As a result of all the Lasix, which pull off fluids and are thus quite hard on the kidneys long-term, and an electrolyte imbalance, her BUN (Blood Urea Nitrogen), Creatinine and potassium levels have crept up and were quite a bit too high today.  Because they monitor all of these levels daily, the doctors are able to catch issues early and make adjustments.  A number of meds were held this morning that impact potassium levels and fluid load.  Also, I am not giving her milk or orange juice today, both of which are high in potassium.  They retested labs this afternoon and thankfully her numbers have trended down now nicely.  Most likely she can resume her regular meds tomorrow.

The issue with her kidney’s also prompted a hold on the planned wean of Milrinone, originally set to begin today.  Allistaire had her echocardiogram on Monday.  It was a bit deflating.  Dr. Hong, the attending cardiologist this week, said that while the EF (Ejection Fraction) is up to 21% from 11%, she says her heart looks about the same.  We had a lengthy conversation which included looking on the computer at her echo from back in December when her EF was 65%.  Of course there was a marked difference.  Dr. Hong seemed cautious to not be too optimistic and over-promise.  This was where we had a bit of tension.  I’m not looking for grand results in two weeks time.  I’m looking for a shred of hope that shows she is going in the right direction.  I’m looking to take stock of every victory no matter how small.  I know it is no guarantee of what will come, but I have to live out these days and I need that fuel of hope to keep me going.  Dr. Hong did say that her right ventricle, which had looked fine until the last echo two weeks ago, had improved, as had the function of the mitral valve.  They haven’t recovered fully but they are better than they were before.  Hopefully this recovery will in turn aid the recovery of the left ventricle.  The cardiologists will meet today to discuss med changes including the possible addition of another med and the likely wean of Milrinone, set to begin tomorrow.

I have never felt so weary, so utterly tired.  The planned wean of Milrinone will be incredibly slow this time.  Last time they weaned from .5 to zero in a week.  This time they plan to wean .1 per week, starting at .75 which means a seven and a half week wean to zero, five times slower than before. This is wise because we all want her body to have the very best shot at successfully coming off.  Yet, as I calculate out the very, very best scenario it would be three more months until transplant, which assumes the ability to keep her cancer in remission, a successful wean and sufficiently improved cardiac function.  This is a lot to assume.  Nevertheless, if you add these three months to the 100 days post transplant one is required to stay in Seattle for, we’re looking at a minimum of six more months.  I’m packing up my wool sweaters to send home with my mother-in-law, JoMarie.  But I’m wondering if the seasons will turn again and again with us still here and I may need to wear them again in this place.  Daunting.  So very daunting.

Friday was Allistaire’s 5th birthday.  It was a crazy, whirlwind of a day, fun and emotional.  The point of celebrating a birthday is to remember back to that day your beloved came into this world and to express thanks for each year since.  I could never have imagined when Allistaire was born that this fight against cancer would exist, much less so consume her days.  Four out of five birthdays have either been in the hospital or under the shadow of treatment.  We did nothing for her second birthday but be glad to be home after leaving the hospital the night before at 11:30pm when her last dose of chemo for that round had been given.  Her third birthday was spent in the hospital soon after her first relapse, just the two of us. Her fourth birthday was a grand event at home, only two days after she had her Hickman line removed at Seattle Children’s marking the end of treatment but with the looming fear and wonder of what the coming year would hold.  For me Friday was a day to be in both wonder and in sorrow.  It is wondrous to me that her life has been extended over and over and she is here with us for another birthday.  And my heart is heavy with grief that her little girl years have been so constrained.  I think of the lives of other little girls and the contrast is so stark – like a sudden punch in the stomach.  I am so keenly aware of the fact that this could be her last birthday, that her life ever hangs in the balance.  Tears threatened throughout the day.

I also nearly cried as we walked into her room that afternoon.  A sweet woman, Libby, from Soul Illuminations, had volunteered to come and take photos of us so we had headed down the hall to the Quiet Room where the visuals are better.  When we came back to the room, the bed had been shoved to the far wall and the room was full of joyful faces eager to celebrate Allistaire and see her delight.  Sarah from PT (Physical Therapy) came with her parachute and a group was bouncing a beach ball a top the parachute.  There was music and clowns and cakes and too many presents and just a whole lot of love.  Again I had to hold back the tears – that she would be so loved, so celebrated, that so much planning by the hospital staff would go into making this day special for her, well, it was overwhelming in such a beautiful way.  And it was a special joy to have Solveig and JoMarie surprise her for her birthday.  Ah, two sisters giggling.  There is nothing better, nothing.

When Allistaire was two weeks old I took her to see Caroline, her great-grandmother who was in a nursing home.  We arrived to find Caroline in her group time with fellow Alzheimer’s patients.  Two of the women asked how old Allistaire was.  I told them, “Two weeks.”  “Wow, just two weeks,” they exclaimed with ooos and sweet faces of cherishing delight.  A minute later they would ask the same question, which yielded the exact same level of surprise and delight.  This went on and on.  Same question.  Same answer.  Same response.  It was comical in one sense, but I realized that this question yielded a wonderful answer. What about when these same women asked about their husbands who had likely passed away.  They had to meet the news of their beloveds’ death over and over, with the same shock and sorrow.  It’s not quite the same for me but there is a fair amount of similarity.  There is no clear course.  I look at a little girl so full of life and joy and exuberance and some neon sign next to her head flashes, “probably not going to make it, probably going to die, don’t get your hopes up.”  I look at this test result and hope.  I look at that test result and fear the worst.  One doctor emphasizes, “kid’s are resilient, they surprise you all the time,” and another keeps a straight face and offers no hint of optimism.  I feel flung to and fro, bashing up against this likelihood of death over and over as I swing back around.  It is not just a day-to-day existence here but a reality that from morning rise to evening’s setting sun the whole nature of things can change.

No matter how normal this has all become, no matter how cheerily I decorate her room, I constantly meet with shock the dark presence in the room.  But I’m looking for joy, joy in the day and joy to come.  I am fixing my eyes on the God who counts the number of hairs on my head and who determines each day, hour, minute, molecule, ion.  It is His to choose where these days lead.  It is His tale to tell.  And what is my life anyway?  Is it so very essential that I check the boxes I’m told relentlessly make up a good life?  My life doesn’t fit into those wee constrained boxes and neither does my God.  His ways are not our ways and there is thrill, there is invigoration, there is anticipation, there is leaning into these days.  I am on the look out for what He will do.  I am on the look out for my God who gave me this small, loving, beautiful, hilarious, strong, feisty, wondrous girl.  Thank you Father for the abundance you have given.  Thank you for better days and for a glimmer of light.IMG_2848 IMG_2860 IMG_2867 IMG_2870 IMG_2873 IMG_2876 IMG_2883 IMG_2889 IMG_2890 IMG_2891 IMG_2892 IMG_2893 IMG_2895 IMG_2896 IMG_2897 IMG_2904 IMG_2909 IMG_2911 IMG_2929 IMG_2933 IMG_2935 IMG_2937 IMG_2939 IMG_2941 IMG_2949 IMG_2951 IMG_2952 IMG_2954 IMG_2956 IMG_2957 IMG_2958 IMG_2962 IMG_2963 IMG_2968 IMG_2971 IMG_2977 IMG_2981 IMG_2984

Bewilder

Standard

IMG_2817Bewilder.  Is that the right word?  I startle to find myself out in these woods, not sure where I am, sometime between night and coming day, or is the day done and night approaching?  I am out here, cast in the land between lands, this already and not yet, ever tension.  But she is so alive?!  “So to summarize,” I say when there is nothing left to say, “You don’t believe she will make it?”  All heads nod.

I didn’t want to cry.  I didn’t want to have my heart tearing out of me be seen as with audience by these eight.  I fought the tears knowing the all consuming fatigue they bring, all the cells of my flesh flattened under crushing weight, silent and unrelenting.  I studied the tree tops beyond those panes of glass, never seeing them.  “Her heart could suddenly stop.  She could have an arrhythmia.”  Gutteral cry, “Oh God.”  It was not hard for the images of doctors swarming her to come vivid.  Throughout the day and night the speaker in the hallway, the speaker in the room declares, “Rapid Response Team, Code Blue,” always joined with the location.  “Code Blue Ocean 8 in front of the lab.”  “Code Blue River 5 room 307.”  I have seen the flood of doctors and nurses responding like blood gushing a wound.  Instantly I can hear the words, “Code Blue Forest 6 room 321,” and this time it would be my sweet girl.  I know if it came to this it would be the end.  While they might be able to bring her temporarily back, there would ultimately be no return, no recovery.  But yes, yes, yes try to bring her back because I want to gather those who have so cherished her.  I want that time to surround her with faces who hold her dear.  I want that chance to say good-bye one last time.  I want to blow her kisses.  I looked into the cornflower blue of her eyes and mourned that the one beautiful thing I clearly gave her might be lost.

Dr. Kemna, the cardiologist does not think there is a very good chance she will be able to recover the degree of heart function necessary to qualify for transplant, that far off ejection fraction of forty-five, if she can recover at all.  At some point in the future, they will try to wean her off the Milrinone.  Her ability to successfully wean off Milrinone or not will be an indicator of the likelihood that her heart can recover some function.  So while Milrinone does nothing to help the heart recover, whether or not it is needed to function well in terms of things like breathing and profusion to the rest of her body, will signal how severely her heart has been wounded or the possibility of resilience.  If she is unable to go off Milrinone, it may be possible to move her up to the cancer unit, or even possibly to Ronald McDonald House, but these moves would solely be to maximize quality time with her.  It would foretell the end.  If she can successfully wean off Milrinone she would continue on oral heart meds and consistent monitoring to see if there is any improvement in her heart function.

All efforts to improve her heart function is dependent on the resource of time.  It will take time.  The question is whether or not her cancer will allow such time.  As noted before, we are working off the assumption that she is in remission given that she started this round in remission in her marrow.  The extremely poor condition of her heart continues to make sedation unnecessarily risky.  The PET/CT scan can physically be given without sedation, it is just a matter of whether or not Allistaire can stay still enough for the 45 ish minutes it would take to do the scan and get a good image.  She can certainly lay still for the very brief 30 seconds a CT requires and so we may start with that.  Dr. Gardner said the down side of CT is that it can show lesions that are actually healing rather than solely active leukemia, with no ability to tell the difference on the image.  The advantage of the PET scan is that it shows the active metabolic cancer.  Thankfully, a PET scan carries no risk as it is not a form of radiation and so the worst that could happen is that we try it and it doesn’t yield a clear image because Allistaire doesn’t stay still enough.  For now a bone marrow biopsy is not an option, but they will be drawing peripheral blood upon which the pathologist will conduct Flow Cytometry.  While it will not be conclusive, it will be comforting if there is no leukemia present which would in turn more affirm the view that she is in remission.

Without any further treatment, Dr. Gardner says Allistaire only has about a 10% chance of staying in remission.  I can’t imagine doing nothing further.  So once her ANC reaches 1,000 she will begin getting Azacitidine.  Today her ANC is 348.  Neither Clofarabine or Decitabine are options because they suppress blood counts too much.  At this point, any further bacterial or viral infection for Allistaire could easily and immediately tip her heart over the edge.  She has no reserve.  The hope is that Azacitidine will be enough and have the same success it did in the seven rounds she had after her bone marrow transplant.  Another upside is that it can be given outpatient.  If she still has chloromas, the solid leukemia seen on PET/CT, there is the possibility of doing focal radiation which would likely be very effective.  However, radiation is given under sedation for someone as young as Allistaire.  You must lay completely still in the exact position they place you in.  Radiation is incredibly precisely targeted.  A styrofoam form was created to lay Allistaire in the last time she had radiation and three permanent little dots were tattooed on her body in order to line everything up with the rigorous calculations done in preparation.  Allistaire would be left totally alone in that room with the foot thick lead door.  I really don’t know if she could do it.  If Allistaire is not in remission, every single thing changes.  If she is not in remission, she is done, done.  There is nothing left to offer her because anything that has the potential to get her back in remission would be far too harsh for her body to endure.

One other possible option, which like transplant, requires substantial improvement of heart function is the WT1 trial with the modified TCRs being conducted by Fred Hutchinson Cancer Research Center. (Click HERE for details on this trial)  This trial requires that Allistaire’s ejection fraction be 35 or higher.  Typically the cell manipulation is done with donor cells left from a stem cell transplant, however, in Allistaire’s case they could ask the donor to donate cells directly for this trial.  The scientists would engineer the donor’s T-cells to specifically target the WT1 protein expressed on the surface of her leukemia cells and in turn destroy the cancer cell.  Check out more about TCRs (T-Cell Receptors) at Juno Therapeutics some of whose scientific founders include Dr. Phil Greenberg at Fred Hutch and Dr. Mike Jenson at the Seattle Children’s Ben Town Research Center.

The other topic that was discussed was the potential use of VADs.  The other day when I logged onto the Seattle Children’s Hospital Family Network, their website popped up and the main page was featuring the expertise at Seattle Children’s and extensive availability of a variety of VADs – Ventricular Assist Devices.  My face lit up with possibility and terror at such a possibility, such an extreme measure.  It said that VADs can be used for patients with heart failure to allow their hearts to rest and recover.  I immediately tracked down the cardiologists and said I wanted to discuss a VAD as a possible option for Allistaire.  Apparently Dr. Gardner had the same idea and discussed it with the cardiologists before our care conference which occurred yesterday afternoon.  The short of it is that a VAD is not an option for Allistaire.  You cannot go through a bone marrow transplant with a VAD.  The context in which they are successfully used in the short-term is for patients whose heart has an acute hit, from a virus for example, but was previously healthy.  The VAD can indeed give their heart the rest it needs to recover and the relative health of their heart can also recover from the actual damage done by implanting the VAD.  In Allistaire’s case her heart is exhibiting the cumulative effect of all the harsh chemo she has endured.  It has been compensating a very long time and likely cannot bounce back.  A VAD in her case would only be possible as a bridge to heart transplant, which as one with cancer, she is not eligible for.  The thought of a heart transplant is insane to me, insane.  But I won’t deny that if she were in this plight on the other side of her bone marrow transplant, I would not let up, we would walk forward to the transplantation of her most core organ.  The cardiologist noted that in cases of chemotherapy induced cardiomyopathy, it doesn’t usually show up for another 10-20 years.  That sounds like a long time.  But really, Allistaire would still only be 15 to 25 years old with a heart that has failed.

It is uniquely woeful that the very treatment that has extended Allistaire’s life these past three plus years is what has so damaged her heart.  Yesterday the cardiologists wanted an X-ray of her lungs to look for edema.  They put the little lead heart on her groin again and it was like a knife twisting in me.  In the care conference I found myself internally crying out, “You’ve already taken so much from her, so much…now this too, this?!”  I’ve already yielded her ovaries.  I’ve already acquiesced to the reality that TBI (total body irradiation) would impact her cognitive abilities.  I know her growth and bones have already been harmed.  She has already lost so many days as a child, and now her heart too will be gouged out?  It is like cutting off someone’s leg and saying, be happy, you still have one leg.  And then, oh wait, we must cut off that other leg and an arm.  Limbless, you are thankful to be alive.  But you have been harmed you see?  You have been ravaged.  The exchange for your life has cost so very much.  But it turns out you cannot live without your heart.

I asked Dr. Brogan, our main ICU doctor, if he had any wisdom he could offer, having witnessed so many families over the years walk this road.  “I don’t know how to do this,” my voice bleak.  “No one knows how to do this,” he told me.  It is not natural that a child should die before their parent.  While it happens often enough, it is not the natural order.  He was very gracious toward us.  I am so very glad to have him on our team, and like Dr. Gardner, I have invited him and asked him to speak to us honestly if and when he believes we have exhausted our options.  Dr. Gardner told Sten and I yesterday at the end of the care conference when it was just the three of us, that she thinks of Allistaire every single day.  That is all I could possibly ask for.  I just need to know that she is being fought for, that she is not being given up.  And if they believe the time has come, let them speak and at last we can yield, at last we will rest from our relentless pursuit of her life.

For now, we press on.  It is not yet time to lay down and rest.  We press on, we endure.  We put our face to the wind and cry out in anguish and fierce determination.  There may be a way through, there may.  There are so many mysteries of how our God works, of his sovereignty and the intertwining of our prayers.  I am humbled, brought low, so low with gratitude for thousands who cry out to the Lord on Allistaire’s behalf, on ours.  Thank you.  Thank you my brothers and thank you my sisters, bound eternally by the blood of our sweet savior Jesus Christ.  Thank you for sharing our burden.  Thank you for standing out in the wild night under that sweep of stars, that dense shimmer and gauze of Milky Way and crying out for the Living God of the Universe to hear your one small voice!  For we are calling out to you Oh GOD!  We do not understand your ways.  What you are doing is here is so unclear, it seems so dreadfully wrong.  How will you ever, ever redeem this loss?

I find myself again standing with the blaze of roaring furnace behind me declaring that I know my God is able to save, but even if He does not, I will not bow to any other god.  I will stand in worship, though the fire consume me.  Am I fool?  Many will nod, yes.  But you see, I have seen the Lord.  I have heard His voice.  I choose to turn my face to Him.  I will again fix my eyes on Him.  I will yield again to His call to trust though the mountains fall into the sea, for the joy set before me.  For the joy that will come, but the joy too that is, that is in this present time.  I seek to be fully present to these minutes, these gritty seconds that accumulate to the sum of minutes, hours and days.  I instruct Allistaire to consider her tone with the nurses when she is irritated with their presence.  It is not about manners, it is about love, love.  I seek to love.  I seek to love Allistaire.  I seek to love Sten and Solveig.  I seek to love each nurse, doctor and person that I encounter.  For this is my life, to love the Lord my God and to love His creation that bears His image.

Thank you to so many that have given generously to further cancer research.  Thank you for your heartbreak over Allistaire’s broken heart and a yearning that there could be a better way.  If you would like to stand with us in funding cancer research so cures for cancer can be obtained without costing so much life, please consider supporting me in Obliteride which gives directly to cancer research at Fred Hutchinson Cancer Research Center.

Also, my dear friend and fellow cancer-fighting mom, Pam, has organized a time to call out together to God on behalf of Allistaire.  The details can be found HERE on Facebook.  The time is set for next Friday morning, March 6th, Allistaire’s 5th birthday.  Please do not send any birthday gifts.  The truth is, she has enough in the way of toys and such.  If you wish to honor her life and the hope for more life, again I ask you to consider taking that desire and investing it in cancer research, and certainly, please pray for my girl.  Prayer is not some magic equation where enough prayers by enough people yields the desired result.  Philippians 4:6-7 says much to instruct us:

“Do not be anxious about anything, but in everything by prayer and supplication, with thanksgiving, let your request be known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”IMG_2804 IMG_2809 IMG_2824 IMG_2822 IMG_2813 IMG_2802